My life with the Sullivan boys

This red coat

2011-12-12T21:05:00.000-06:00

This red coat wasn't yours to begin with, it was Owen's.
This red coat has been in the snow, has been in the rain, has been filthy from rolling in the dirty snow on a warm winter day.
This red coat has traveled many places, to school, to Target, to the water park, to the skating rink, to birthday parties and arcades.
Today, this red coat is driving me crazy. I never dreamed it would bother me so much.
This red coat fit your brother perfectly, kept him warm for two winters.
Today, I want to burn this red coat. I rationalized the price of this coat because I knew you and your younger brother would wear it too. I can't burn it can I?

This red coat is another reminder that being your mom is hard.
Your younger brother Ryan puts his coat on by himself.
Every morning, without fail, I struggle with this red coat. The drool from the previous day reminds me that it needs to be washed. The rip on the sleeve reminds me that you won't ever get it caught on the hook while pulling it down from the hanger. The double cuff to block out the snow reminds me that you won't need this terribly inconvenient feature. The hood reminds me of that beautiful day at the nature center tromping through the snow with your brother and you weren't there.
This other red coat is the match to yours, worn by another five year old boy who takes full advantage of its features.

So I will search again, for the perfect coat. It can't be too puffy because I wouldn't be able to strap you in your wheelchair. It can't have a tuck in hood because it's too bulky behind your head support. It can't be to small because there will be no way I'll be able to maneuver your tight little arms through the sleeves. It can't be too thin because you'll get cold while sitting outside watching your classmates play around you.

So as with many other things: shoes that open big enough to get your AFO's to fit; pants with elastic waist to make diaper changes easier; shirts with stretchier fabric to fit your tight little arms through the sleeves; strollers to support your body as you grow; mittens that stay on your clinched fists while your outside; I'll find the right coat.
A coat thats just yours. When I do, I'll give this red coat to Ryan. He will write his own story with this coat, he'll get his own rips and stains on it and most importantly, it won't be your red coat anymore.

nine years so far...

2011-10-12T23:35:00.000-05:00

Volkswagon Golf
Audi S6
BMW M3
Event planner
Commercial Real Estate broker
Searay Amberjack
Supra
700 sq. ft. condo
Newly remodeled home in St. Louis Park
Zipper
Cabo San Lucas
Playa del Carmen
Grand Cayman
Berlin
Stockholm
Maui
$30,000 wedding
Mercedes ML320
BMW M3
BMW M5
second row seats for all Timberwolves games
Ordway season tickets
Minnesota Wild season tickets
Minikahda Club
Buckle
Honeymoon-two weeks in Italy
I-plan Event Company
5th Street Ventures
First Response = +
Maui, again
It's a boy!
ECFE
Playdates
Tumbling class
Babysitter
Lake Namekagon
Miscarriage
YMCA Soccer coach
Stroller
Jogging stroller
First Response = +
Naples, FL
Pneumonia
Nebulizer
Hospital three days
It's a boy!
Double stroller
Projectile vomit
Colic
Nutramigen
Projectile vomit
Weight loss
Surgery-pyloric stenosis
Colic
Weight gain
4504 Casco Ave.
Seizure
Ambulance
ER
CAT Scan
MRI
EEG
All tests "normal"
Low muscle tone
Missed milestones
Facial twitches
Epilepsy ward
24 hour EEG
Doctor sit down
Life changing news
Numb
Pain
Tears
Disbelief
More tests
More doctors
Therapy
Volvo S60
Home visits
Support Groups
Private PT
Pneumonia
Hospital stays
O2 levels
Nebulizer
Acura MDX
More therapy
Different doctors
Pneumonia
Hospital stay
First Response = +
Surrender
It's a boy!
Minivan
Lyla
Audi S4
Another double stroller
Working the steps
First wheelchair
Date night
Feeding chair
Stander
Bath chair
Ramp
Johnny Jump up
Milestones reached
Nanny
Walking at nine months
Finding God
Constant smiles
Country Club Road
Kindergarten
New friends
ECSE
More new friends
Another new wheelchair
Chiropractor
Running
Pain
Joy
Airplane
Seattle
Road trips
McGregor
New Ulm
Fond du Lac
More running
Headaches
Preschool
2nd grade
IEP meeting
Weekend in Chicago
Happy Anniversary.

Two months past.

2011-09-30T00:26:00.001-05:00

This is the night when I stay up too late to tell you why I haven't written.

I wanted you to change. I wanted you to be better. Different. I wanted you to care about me. I wanted you to think of others. I wanted you to know my pain. I wanted you on my side. I needed you on my side. I wanted you to hold me up and tell me everything was going to be okay. I wanted you to protect me from harm. I wanted you to be stronger. I wanted you to be satisfied. I wanted you to have integrity. I wanted you to stay. I wanted you to be loved by others. I wanted you to stop talking about yourself for one minute. I wanted you to admire me. I wanted you to be my friend. I wanted you to love my kids. I wanted you to keep your promise. I wanted more from you than you could ever give.

I created you in my mind, when we were young and she left. It was supposed to be me and you fighting off the whole world together. Me and you walking home fron junior high in the snow and falling in the ditch. You helped me out, we made it home. You broke the window each time we were locked out, we got inside.

Then you left, over and over. Never home. Always in trouble. Always lost. I wanted you to know how smart you were. I wanted you to know how loved you were, but you left again and again. Heartbroken I slowly gave up. You come back here and there, then you leave again. I never know who you'll be when you return.

I want you in my life, but maybe I just want the idea of you.

I want you to know my kids. I want you to want to know my kids. I want you to teach them how to waterski. I want you to teach them about computers and video games. I want you to bring them to Disney Land. I want you be here when you are here.

I want to talk again. I want to be kind to you. I want to accept you as you are. I'm afraid. It's up to me I know, but it's easier when it's not. It's easier to blame everything on you. It's easier to judge you and cut you off so I won't get hurt again. It's funny, I'm mad at you, but I feel the pain. I know what I'm doing. I know I shouldn't have such expectations for you. I pray everyday for the expectations to subside so that I can accept you as you are. I have no business asking all these things from you.

But I'm asking...

Happy Birthday Dermot.

2011-07-21T21:30:00.000-05:00

I was going to create this amazingly beautiful photo collage that chronicled Dermot's five years so far. I uploaded the photos, found a great video. Then I stopped. The video didn't upload correctly. I was searching through my photo library of the last five years. I forgot how beautiful Dermot was as a baby. I forgot how innocent my life was when he was born. I forgot who I was five years ago.

I was a perfectionist, a people pleaser, a somewhat happy, but curiously lonely person.I had a handful of friends and a lot of expectations for my life and the lives of my boys. I am no longer that person. I tend to get a bit retrospective every year around Dermot's birthday. Dermot turns five tomorrow.

Five year olds are supposed to be going to kindergarten, five year olds are supposed to be taking the training wheels off their bikes. Five year olds can use a booster seat in the car, unbuckle their own seat belt and climb out of the car themselves. Five year olds brave the big water slides at the city pool and jump off the diving board and swim back to the edge. Five year olds start hockey while their parents secretly pray that they're a natural on the ice. Five year olds fight constantly with their brothers and ask "why?" all the time.

But not my five year old. My five year old wears diapers, my five year old has a special seat in the car to support his body. My five year old floats enthusiastically in the baby pool while I hold his head up. My five year old is being held back for another year of Special Education preschool. My five year old lays on his back "dancing" while his brothers play and fight around him. My five year old is different than your five year old.

This is the fourth year I've celebrated Dermot's birthday. This year we will have a few small family get togethers. Last year I threw a big party for Dermot's birthday with family and friends and classmates, I even ordered a jumpy thing for the kids to bounce around. The year before I can't remember what we did to mark the occasion. His second was a modest party with family and homemade ice cream cake.

The one that strikes me the most when I look back, is his first birthday. I wasn't planning a party. In my mind at the time, there wasn't anything to celebrate, I was consumed by grief. I made no plans, I sent no invitations, I wanted it to come and go just like any other day. I shared my feelings, in great detail, to one of my dearest friends. She said she understood, she said she could see I was hurting, but what she said next was the most important thing. She said: "You need to have a party for Dermot. Period" Because the fact that I didn't want to celebrate wasn't the point, the fact that I was having a hard time getting out of bed, didn't matter. Dermot was my kid and all kids need birthday parties.

So I did, I had that party. I called everyone that could make it on three days notice. I made an ice cream cake. My mom and I constructed some make shift hats from the comics in the Sunday paper, and the party was lovely and painful all at the same time.

So four years later as Dermot turns five, I have a party. I don't punish myself for being sad for all the things he can't do, I celebrate Dermot, for being Dermot.

Happy Birthday Dermot!

Dermot's first birthday

Moments of Grace

2011-06-13T23:27:00.001-05:00

I finally find the place. I had been here before with Dermot, but I'd always relied upon my GPS. I foolishly thought I could find it by memory. It's a twenty five minute drive from the local office, but the guy we preferred to see was at the northern office today. I park, place my disability tag on the rear view mirror, get out of the car and start rifling through the "backpack" attached to Dermot's wheelchair. No bibs, no burp cloths. I've found these to be a necessity during doctor visits to collect the drool that accompanies Dermot these days. Damn, I say under my breath while I simultaneously blame my undeserving husband for the innocent omission.

I roll the wheelchair out of the van as far as it will go and let it plop to the pavement so I don't have to lift it. I find a dirty sweatshirt to take the place of the burp cloths and strap Dermot into his chair.

I notice teenagers in the car across from us playing their stereo so loud I can feel it, I look over to see them singing. I smirk a little bit.

Into the doctor's office we go, we are without an appointment but I've been assured the wait won't take too long. I approach the reception desk and begin to cry. It's not like this is a huge crisis, or a serious illness. Dermot has hives that have been getting continually worse in the last three days. It just happens to coincide with the number of days since we upped the dosage of his latest seizure medication. Crap. This one seemed to be helping, it also seems to have made my Dermot look like he'd been bitten by twenty eight mosquitoes over and over.

I apologize to the women at the desk, "It's alright" she said. "what's your child's name?" she asks. I tell her, she asks why he's here today, as if its not painfully obvious. I tell her, through my tears while grabbing a handful of tissues. She directs us to have a seat.

The waiting room isn't full, there's a Hispanic woman with her eighteen month old son and a mother sitting behind a partition talking to two boys who seem to be around twelve. I grab a magazine and pretend to read while my tears dry up. I hear one of the boys, he doesn't sound typical. I glance over and see he's physically and mentally impaired and he's quite happy and so is his mother. I'm not alone. I feel a little bit better.

After the doctor visit, in which he prescribes a simple treatment of Benedryl, I turn on MPR to hear the voice of Ian Brown talking about his struggles of raising a child with special needs. The tears come again. I'm lucky to have a long drive ahead and the program was just beginning. I listen all the way home. I listen to his philosophy on what value kids like his and mine, have to society and learn more about his life with his son and why he wrote his book. Then I'm compelled to call in, I connected to his story so much, I needed to thank them for writing his book. Within minutes, I'm on the radio, I make my comment and have a brief dialog while fighting back more tears. I feel a little better.

As I back into the garage, I watch as the neighbor boy (whose actually thirty one years old and has intellectual disabilities) walk by with his dog. I smile, he seems to walk by at the most perfectly timed moments. I feel better.

Before I get out of the car I check my email. One from a my friend offering to drive my oldest to camp today. Thank goodness, I don't want to drag the two little ones around today. Again, I feel better.

To the sceptic, these events may just seem like coincidences, but to me, they are moments of grace.

Moments that would be missed if I'm not listening closely. But as my experience grows in this land of pain and parenthood, I realize I am being divinely led, guided and cared for. It's not the way I would prefer to be watched over, it would be much easier to have someone else care for Dermot, make all the hard decisions, drive to all the appointments and worry about his future. But that's not how it works. It's my job, but at least I know some one's looking out for me up there...

Alone no more.

2011-05-21T00:11:00.000-05:00

Three and a half years ago, I was alone. Alone with my anxiety and fear, alone with unanswered questions, alone with what to do next.

Countless hours of surfing the Internet for others, others like me, mothers like me. I knew if I stayed alone with all of this, I wouldn't survive. I found one "special needs parenting" chat group that proved to be quite worthless.
I called local organizations that advocate for kids with disabilities, there was a support group for Down Syndrome parents, quite a few groups for parents with kids on the Autism spectrum, another for ADHD.
I called the local chapter for epilepsy, nothing, except a group for adults that had epilepsy.
Alone I was.
I asked Dermot's therapists if they knew of any place for someone like me, puzzled looks were my answer most of the time.
I asked Dermot's teacher, she promised to connect me, if she found a match.
I kept going. Talking to anyone I knew with "special kids".
I met with my friend's sister who had a little boy with down syndrome. We talked about being different and I observed her how she didn't seem to falling apart at the seams, as I thought I might at any minute. That gave me a glimmer of hope.
I kept going. I met with a friend who has an adult daughter with intellectual disabilities, her daughter lived happily in a group home and kept a job and seems to enjoy her life. Hope grew again.
I kept going. I received a phone call months later from a mother of three, she had a son two weeks younger than Dermot. He had seizures too. I was strangely excited. Someone like me, I thought.
I kept going. That fall, we both ended up attending a newly resurrected parent group that Dermot's school facilitated. The only requirement for this group was your kid had to be enrolled at the school.

This was the beginning of the end for my isolation. In this group I met a woman whose only son had autism, a single mom whose only son was fighting a severe seizure disorder, a mother of three boys, her twins were affected by serious medical issues and cerebral palsy, a single mother of four who was ten years my junior, dealing with a very strong boy that had behavioral disorders, a mother of eight fighting for her youngest daughter against a rare genetic disease. We were people who would not normally mix, pulled together by a common affliction. Pain. A desperate need to connect.

We formed a mini community, sharing resources and therapists, opinions and feelings, dinners and nights out.
We meet twice a month and get together with "alumni" as time permits. Always knowing we have a connection.

My community also grew thanks to the Internet and the wealth of special needs bloggers like myself. First there was Special Needs Mama and her: The Mother at the Swings, then Fawn from Whitehorse, and Samatha's Mom, Following Elias, Zach's mom and Jacob's mom Maria. Facebook friends like Deborah and Tracy whom I've never met, but helped me tremendously.

Then there are the moms I think of as "typical" helping me thru a feeding tube crisis. Another sharing her experience with the death of her son. A handful of other "typical" moms that would bring me dinner in the hospital or watch my other children while I tended to a sick little Dermot.

All this time I'm quite aware there will be more of us, unfortunately. More children getting assessed, more children in the hospital, more moms getting their lives turned completely upside down and never to return to the version of normal they knew before.

I don't want them to be alone, I don't want them to think there's something wrong with their kids or themselves as mothers. I want them to know there are moms out there wanting to help, wanting to give them a hug, or some tough advice or hold their hand through a tough doctors appointment or IEP meeting.

I am alone no more, you don't have to be either.

Ramp

2011-05-02T23:39:00.000-05:00

I just bought a wheelchair ramp. And I cried. I looked at this ramp several times online. I looked at my friend's ramp that's just like it. I looked at this ramp at a mobility store. It's heavy, 28 pounds heavy. I'll have to slide it in and out of my van, attach it to my bumper, unfold it, roll Dermot's wheelchair down it, then fold it back up and slide it back inside. I'll do this at least four times a day.

I had to decide when I'd had enough, I had to decide when my back had had enough, and most alarmingly I had to decide when my bladder had had enough. Lifting a 68 pound awkward wheelchair up into my van while pressing it up against my bladder to get some leverage is unpleasant.

There's hurdles in this journey as a special needs mom and I've discovered they come and go. Some are easy and I don't give them much thought and some I have to sit with for a while, let them fester or grow. Then I overcome. The ramp means more people will look, the ramp means another step to just get Dermot out of the car. And lastly, the ramp means freedom. Now I will take him to Target or the library or the lake for a walk. All the places moms drag their kids everyday. He can come now and I can bring him.

So yes, I cried. I'll get over it and I'll enjoy just a little more freedom with me and D.

Notice everything

2011-03-14T15:29:00.000-05:00

I want you to notice everything.
I want you to notice how your child smiles.

I want you to notice how your child bends down to pick something up, watch him as his knees bend perfectly, aligning with his hips, pay close attention while his hand reaches for the object, focus in on how his fingers come together quite effortlessly to grab the object, then he's up.

Notice every time he looks into your eyes and really sees you.
I want you to notice whenever he calls you "mom" or "mama" or "mommy".
I want you to feel every hug, every kiss.
I want you to notice how he eats the cookie you just gave him, crumbs all over the floor, gone in two bites.
I want you to get teary eyed when he runs away giggling his head off because he thinks you're going to chase him. Hear the footsteps? I want you to.
I want you to notice when he says a word you've never heard him say before, even if that word is "poopy".
I want you to notice how easily he can sit in the cart at Target and point to every item he wants to bring home.
I want you to notice how enthusiastically he brushes his teeth and how proud he is that he can wash his hands himself.
I want you to notice the way he make up songs in the car and sings so everyone can hear him.
I want you to let him wear the outfit he picked out himself, even if it doesn't come close to matching.
I want you to notice everything.
I want you to celebrate everything.
Know that the little things aren't so little to all children.
I look at your children and I notice everything, I look at my children and I notice everything.
When I'm down, I watch my boys when they're not looking, I see the miracles in them everyday.
I am thankful for EVERYTHING.

Profoundly

2011-02-27T23:54:00.000-06:00

I've written many essays in my head. There's the one about being embarrassed by Dermot throwing up in the hospital cafeteria, or the one about friends and how they've changed over the years, or the story about the man I met at the hospital with the nineteen year old son with Dermot-like disabilities or my favorite, the way I use chocolate chip cookies as therapy.

I sit in waiting rooms and write in my head, by the time I get home the details are lost or the energy has left me. I sit awake in bed staring at the ceiling knowing what I want to write, then I get out of bed, start up the computer and my words have left my head.

I've been struck by how profoundly sad I am. I am really sad. The challenges keep coming, changing. I've learned many coping mechanisms, I've found a higher power to run the show, I seek out help from support groups and therapists, I volunteer to help others. All of these things make me feel better, but to my bitter disappointment, they don't always produce the results I need. I still cry often, I am still overcome by how profoundly challenging it is to live with and love Dermot. The minute I think I'm okay, something reminds me how close I am to falling apart.

I won't. I won't fall apart, because I can't. My family needs me, and I am there for them. It's tempting to run away from my reality if only for a little while, but I can't.

Maybe when the snow melts I'll feel better, maybe when I lose five pounds I'll feel better, or I'll go on vacation and I'll feel better, or I'll get a ramp installed in my van and everything will be better. But for now, I'm sad. Sorry, no beautifully written essay tonight, just the facts.

Counting Seizures

2011-02-10T23:16:00.000-06:00

A few days ago I listed that I was counting seizures in my status update on my facebook page. I got a outpouring of concern and kind words.

I wondered what would happen if I said that I was counting seizures in my status update everyday. Would the same people give me the same comments everyday? Would I get new comments from new friends each day? Would people just assume there was a bug in the system and ignore it?

I remember with glaring clarity Dermot's first seizure, it lasted for over two and a half hours and ended in a trip to a the ER and multiple drugs to stop it. My heart was racing, I was shaking uncontrollably while huddled in the corner holding his onesie in my hands while the doctors and nurses worked on him.

Now, nearly three and a half years later I watch Dermot every day. I watch a seizure rudely interrupt a beautiful smile. I watch a seizure destroy his concentration while he plays with a new toy. I watch a seizure intrude his sleep. I watch a seizure jolt his entire body as if he'd been struck by lightning. I watch a seizure remove his personality and leave a blank stare for thirty seconds while drool drips from his lower lip. Every day I watch seizures. Not once a day, not ten times. Too many times to count. I usually stop counting before dinner time. By then my energy is tapped, it's not worth counting another one. After fifty it doesn't make much difference.

My friends ask "what do the doctors say?", the doctors are grasping at straws. There's not a handbook on seizure control and every one's brain is different and every one's seizures react to medications in a different way. I don't blame the doctors anymore and I also don't expect them to know the all the answers either. When the seizures get too bad, I call the doctor, we decide together the next drug to try. I check the side effects online and make an educated guess. We're trying a new one now and weaning off an old one. I'm afraid to call the doctor because neither one of them is working.

So I'm here watching, feeling quite powerless. I just wanted you to know.

The Stove

2011-01-24T23:33:00.000-06:00

I'd seen it a few times before. We used to go on summer camping trips, he'd cook breakfast on it. Mostly hash browns, breakfast sausage, scrambled eggs coated with the remains of the sausage. Toast made with the wire stand. But this time we weren't camping, we were in our kitchen. I wondered why it was on top of the gas stove that he usually cooked on. He made it sound like we were camping inside, like it was fun. At 10 years old, I didn't figure out that the gas bill hadn't been paid.

A few years later as a teenager I would become ashamed of things in my life. My clothes weren't the right brand, my car was a rusty beater, my parents weren't together. I would remember the camp stove in the kitchen and look down upon my father for not providing for us. I would wish for things to be like my best friend Jenny's family. Parents still together, dad brought home a lot of money, mom was home when she'd return from school. Back then, I wanted all of those things. I didn't have them. I lived with my dad, I saw my mom every Wednesday night and every other weekend. My dad wrestled with his own demons for the first few years after their divorce. I always thought I'd suffered because of that. I was always looking for the things I didn't get, the things I thought I needed as a girl.

I was sitting in the Southdale parking lot a few nights ago, it was dark, the car running, lights off, wipers brushing the snow back and forth. I'd just seen Black Swan by myself. I didn't want to let the babysitter go to waste. The movie triggered something in me as I began to drive home. I began to cry instantly, not the "I'm a little bit sad cry", rather the type of cry that comes from the pit of my stomach and just won't stop. I'd been holding in all the information about Dermot's condition for days, I told no one. I thought I was protecting everyone because the truth was to much to bear, I now know I was protecting myself.

As I continued to weep, I ran thru a list of close friends and relatives in my head. I needed to call someone, I needed to tell someone so that I wasn't alone with the information. I needed someone on the other end of the phone. I called my father. Like so many other times before, he answered. I told him everything, I told him how scared I was, I told him how much I needed him, I told him how much I loved Dermot. After 30 minutes of crying and conversation, I was better, less afraid. I had someone else who knew. That was a blessing.

After that phone call I kept thinking of that green metal camp stove in our kitchen. What it meant. We didn't have much money growing up, my dad did what he had to, to provide for me and my brother. It's only now as a mother that I can appreciate him for that. He may not have been able to keep us in the latest fashions and take us on fancy vacations. But, he gave me the ability to share my feelings, it was okay to cry, okay to be vulnerable. One thing is certain, he's always been on the other end of the phone when I've needed him and for that I am grateful.

Thanks Dad.

Mayo.

2011-01-20T23:04:00.001-06:00

We left Mayo clinic today. We will go back next week. Muscle biopsy will confirm. A mitochondrial disorder. Rare. Not surprised. Not happy. Not sad.

Not much left to say tonight.
http://www.umdf.org/

Gift

2010-12-06T21:07:00.001-06:00

My neck is sore. Somehow the giant stuffed frog that I'm using as a pillow just isn't cutting it. I'm lodged between the safety rail of Dermot's bed and the foam wedge that Dermot sleeps on to keep his head elevated. I'm listening to the soft cello of Yo Yo Ma playing the Bach concerto, a slight snore from Dermot's breath and my cat purring next to me.

I received a gift tonight, I felt Dermot fall asleep. We were laying together, he was playing with my fingers, a few delicate whines later and he drifts off while holding my hands in his. My tears fall softly, tears of love and contentment. A few moments later, my cat appears on the bed and finds her spot in the crux of my side and begins to purr. She's predictable like that. I believe she smells the salt in the tears and knows where she's needed. Perhaps a servant of the man upstairs sent to comfort me.

I felt that ache in my gut today, the one that never truly goes away. The one that tells me things are different. Through the years of dealing with this ache I've tried many ways to make it go away. Therapy, running, eating, spending money, cleaning until there's nothing else to clean, baking lots and lots of cookies. All of these are temporary fixes because I know this ache will always be with me. I remember describing it to my friends a few years ago, they looked puzzled by my explanation.The only thing I can do is accept it and keep going.

Dermot has given me many gifts in his short life so far. Patience, tolerance, compassion, selflessness and a degree of love I didn't know I could possess. He gives me these gifts in his own way. When he's sick he needs me to be there for him, drop everything. When he's happy, he teaches me to find joy in tiny instances. When he's sad he proves to me that he indeed knows when I'm holding him over anyone else.

So tonight, I walked into his room to see why he was whining. He'd thrown up a bit on his pajama shirt, I proceeded to change his shirt and while I was doing it, he was smiling and purred in his own sort of way. He knows when I'm with him. I threw his pajama top in his laundry basket and climbed into bed with him. That was my gift. He knew it was me, I needed that today. I comforted him while he comforted me. And the cat, she's still sleeping with Dermot, keeping him warm.

Thanks, thanks for the gift and thanks for the cat.

Adversity.

2010-11-24T00:35:00.001-06:00

Things are fine, things are routine. I watch two of my boys grow and develop at a lightening fast pace. The two year old is remarkable. I think to myself, are all two year-olds this amazing? Or am I just paying more attention? My six year old is growing into his own person. Full of joy and compassion, frustration and determination. Are all six year-olds like this? Or am I just paying more attention?

I watch Dermot stay the same each day. Days filled with stretching, meds, equipment, lifting, drooling, and all the other minor irritants that eat at my sense of well being each day. I'm angry that these things don't allow me the patience for the everyday occurrences of life. Everything seems amplified and dampened all at once. Things that used to matter so much don't and things that shouldn't matter do.

We took a trip down to Mayo Clinic a few weeks ago. We had a few tests done (EEG, Blood draw), saw a few doctors (metabolic/geneticist, a neurologist/epilepsy specialist) We answer all of their questions about Dermot. "Was your pregnancy normal?" When was his first seizure?" "What drugs has he been on?" "Can he roll over, sit up, crawl?" "Is he developing new skills?"

Sometimes I drive alone in my car with the music way too loud and I am overcome by grief. Sometimes I'm out running and begin to cry spontaneously. Sometimes I watch my other boys hug each other goodnight and get teary eyed. Sometimes it just too much to bear. Sometimes.

There's no way to describe the feeling of watching your son grow, but not develop. Wishing he'd stop growing so I'll always be able to hold and carry him. Knowing that the day will come soon when I will not be able to lift and carry him. Helpless. Preparing for the next stage of Dermot's life is beyond difficult. Each day I try to move towards it. I leave him in his chair longer than I want to because he's too heavy to lift and my back is already telling me enough. I order the wheelchair from the medical supply company. I consider ripping the carpet out of the hallway so his chair rolls smoothly to his room.

I have to catch my breath before the silent panic inside me takes over. I have believe that Dermot is making me a better person for everyone in my life. "Adversity introduces man to himself" a poet once wrote. I do believe that. I try not to judge, I try not to gossip, I help others whenever I am needed. I forgive myself for not being perfect and I allow myself to feel my feelings. Most of the time, I don't question it.

That's me, up past midnight, that's what I wanted to say.

Strolling along

2010-10-05T23:23:00.001-05:00

So I did it. I took Dermot on a bike ride today. He smiled and I smiled too.

I held a garage sale to raise funds for this $1000 bike trailer, I came within $80 and I smiled.

Ever since Dermot was born I've been buying strollers.

First was the Graco Duoglider, too long and hard to steer.

Then there's the Dreamer Design jogger, too big!

Then, a Joovy Double. Way too heavy, plus Dermot was already too big for it.

An Inglesina Zippy, worked for a while, but didn't support Dermot's body enough.

Then the BOB Double, loved it! Dermot's too big for it now.

Now we use a Dreamer Design Double that I procured from ebay because they stopped making them in 2008. I'm guessing we'll be done with that one by next spring because Dermot's getting so big.

Then, an Otto Bock Kimba. We still have this one, he uses it for school and getting around, but he's maxed out the growth in this one.

What's next? A wheelchair. A real wheelchair. Gulp. 50+ lbs. of metal and foam. We're shopping for one now. It's a process that I'm not looking forward to.

But for now, I get to take my son on bike rides. Like any other mom and any other kid.

Today that was enough. It was more than enough.

Why?

2010-08-21T23:24:00.000-05:00

"Why is he in that?" the delicate voice asked.

All around me are children. Whizzing pass in all directions. One year olds plotting out their first steps with Grandma following their every move, toddlers running just because they can, and dozens of preschoolers replicating the motions of a beehive, all dressed in over sized bright colored t-shirts that loudly display which group they belong to.

The delicate voice belongs to one of these preschoolers. Her t-shirt is green, as green as green can get. Standing next to her with a blank almost rude (if he wasn't three) stare on his face was another green t-shirt named Connor.

First I tried to ignore this voice, with all the chaos at the museum I decided to plant myself and Dermot on a bench inside the exhibit room so I could still watch my other boys enjoy their play.
She asked again, "why is he in that?" I summoned up some of my mommy sweetness and answered her.
"He can't walk, this is how he gets around," I said politely.
"Why can't he walk?"
"Well, God made his brain different than you and me. He can't make his legs work the right way."
"That's too bad, how old is he?"
"He's four."
"How old are you?" I ask, hoping to distract her from any more of the difficult questions.
"I'm three, does he go to school?"
"yes, he does, do you?"
"Yes, I'm with my school, this is Connor" she gestures to the short blond boy who's been staring, with this mouth hung open, at Dermot for the last five minutes.
"Hi Connor" I say cheerfully, hoping to break his glance from my son.
Nothing, still staring...
The delicate voice asks me if Dermot has any baby brothers or sisters, I go on to mention Ryan and Owen. Connor finally gets distracted enough to stop his staring.
I tell them his name they tell me theirs and ask them if they'd like to say hi to him. They do.
"Have fun the on the rest of your field trip" I say while I round up the boys to move on to another exhibit at the children's museum.

I can handle a delicate voice asking questions. Actually I appreciate a delicate voice asking questions. They are honest, unfiltered by social graces and motivated by simple curiosity. It's the stares that get me. From the moms, the older kids, the grandparents. All tinged with a level of pity that brings up my insecurities if I I'm not prepared.

On this day, at the Children's Museum I was in no mood for the countless stares and the "non-stares" where they look, but when I make eye contact with them they look away fast and pretend they weren't just trying to figure out what's wrong with Dermot. I just wanted to take ALL of my kids to a place they hadn't been for a while and spend a few hours exploring.

By the end of the visit to the museum I found myself hiding in a corner of the hallway, sitting on a bench holding Dermot, as almost to protect him. My other boys, laughing and running with the babysitter in the anthill exhibit. I was pleasantly surprised to have a young mother with an infant sit down to feed her 4-month old. We exchanged pleasantries and were chatting a bit. Then Dermot, as he often does nowadays, threw up in the burp cloth I was holding in my hand. The young mom left almost immediately, I was still wiping off Dermot.

"That's IT." I said out loud to myself, "We're out of here". I loaded Dermot into his wheelchair and rolled him into the crowded anthill exhibit to collect Owen and Ryan and Jess. Too many children...
I was close to a meltdown when I noticed one little girl standing still in the chaos, looking straight at me. She smiled and waved. As I smiled back to her my anxiety lifted, I took a deep breath and watched the children play until Owen arrived at my feet. "Ready to go honey?" "Okay mommy, Ryan's coming too"

As we drove home from the museum that afternoon I remembered something about that delicate voice and our conversation. I remembered her name.

Her name was Grace.

I don't want to

2010-07-11T22:47:00.001-05:00

There's a giant deer fly circling my head as I walk gingerly through the sunlight field that leads to the lake. I'm dressed in my beat up old flip flops and a ten year old bikini. Dermot lets out a small burp while we travel down to the beach, then unfortunately, he throws up on my chest. Oh well, we can rinse off in the lake. It's at least 50 more feet and my biceps are burning from carrying his 36 pound body all the way from my mom's deck. I'm overcome by fear. It sweeps over me like a wave. I stop to collect myself, as I continue on three or four other flies have joined the other in efforts to drive me completely insane.

I stop at the incline. Twenty steps to the water. Fifteen of them are at a steep, dirt filled incline. "I hate this!" I say to myself. I look down in the water to see my husband playing joyfully with my six-year old. My step-dad is guiding my two-year old through the murky water. Smiles so big I can see all of their teeth. It's funny the flies circling them don't seem to be bothersome. My mom stands in ankle deep water and asks "do you need any help honey?" "No, I'm fine" I say. I am clearly not fine. I've got puke flowing down my chest, my arms are struggling to keep Dermot up and I'm praying to God that I don't wipe out on the hill that separates me and Dermot from the rest of my family.

I made it. I'm still really shaky. I don't mind one bit sitting in the city wading pool with Dermot. But the idea of sitting on the bottom of the lake with the weeds and leeches freaks me out. I want to go back to the cabin, bring Dermot back up there, take his swimsuit off and wrap him up in a warm towel and sit inside where it's safe. I don't. My husband offers to take Dermot, I quickly agree and hand him over. I decide to keep my flip flops on in the lake and I walk out to where my two year old is wading. I take him out to the deeper water with me and rinse the puke from my suit. then he goes back to grandpa and I start kicking out away from the weeds, away from the leeches, away from the flies. I feel it start to lift, I'm coming back. Sue. Here I am. Right here.

I don't want to run, I don't want to eat, I don't want to talk about it, I don't want to read, I don't want to weed the garden, I don't want to write. These are the things I KNOW make me feel better.

I don't want to pour one more drop of formula in that syringe, or wipe one more drip of spit up or suction up one more ounce of secretions or wash one more puke filled t-shirt. These are the things I KNOW I have to do everyday.

I've been holding it all in. The longer it stays in, the easier a moment like swimming in the lake destroys my sanity. Things start to fall apart, I stop caring for myself, I start expect too much from others and I lose perspective. Oh how easy my life would be if Dermot was typical. We could go anywhere and do most anything as a family and not even think twice about it. But then I wouldn't have Ryan, I wouldn't have all the friends that are in my life, I wouldn't truly know who I am and what I'm capable of doing. I can't take any of it back, but I do need to talk about it occasionally. I can't pretend I'm fine all the time. I can't worry about what you'll think of me if you see me crying again. The truth is, I cry a lot. But it's way worse when I don't.

Number three

2010-05-22T22:01:00.003-05:00

My mom requested I write about Ryan. I don't normally take "requests" but I thought about it. I don't write about Ryan because I don't ever worry about Ryan. Ryan gives me almost nothing but pure joy and gratitude. He has reached or exceeded every milestone. He walks, he talks, he runs, he smiles, he laughs, he kisses his brothers good night, he occasionally eats dirt, he eats his vegetables and sleeps through the night.

I believe Ryan is a gift. We planned to have him, but that's all I had to do with it. He came out of me after I giggled (literally). I've been giggling ever since. Ryan makes me remember what normal is. Ryan makes me remember I don't have control over the outcome. He makes me remember that it's not all up to Owen to achieve everything, to stay healthy or be there for Dermot when they all grow up.

Ryan loves his brothers and wants to be like them. I remember the first time I saw Ryan climb into Dermot's stander I cringed, but then I realized he wants to do what both of his big brothers do. I love watching Ryan try to play knee hockey with Owen. At two years old he's not that bad.

At two years old, Ryan has taught Owen how to be a big brother to both of his brothers, he has taught his parents to marvel at every single detail of his development, he's taught me how to laugh again and most importantly he's taught me that joy still exists in our family, it was there the whole time, I just didn't see it.

Thank you Ryan.
Thank you God.

Life gets in the way

2010-05-19T22:55:00.002-05:00

So it's May 19th. I signed up for the Minneapolis Half Marathon on June 6th.

I'm not running. I'm done shaming myself. But truth be told, life gets in the way. That's why none of my plans are ever concrete. I've driven myself crazy trying to control the events and circumstances in my life, anything to hold on to. It doesn't work.

Someone gets sick, I don't sleep for a week. Someone else gets sick, I don't sleep. Try running after four hours of interrupted sleep. It's not fun.

I have been downplaying the emotional toll of a few recent occurrences in my life.

Dermot got a feeding tube, every night I hook Dermot up to a pump that feeds him in his sleep so he gets adequate nutrition throughout a 24 hour period.

Dermot is having trouble clearing his secretions, so tomorrow another machine will be delivered to my house to assist him in clearing his secretions.

Dermot was in jeopardy of losing physical therapy time at school, I met with the school staff to resolve the issue.

Dermot needs additional physical therapy, I found yet another physical therapist to try. I make the appointment, hoping to God I like this one.

I lost it a little last night, I spilled a little water from my glass. It felt good. These things I deal with on a day to day basis are incredibly difficult. They are emotionally draining. No parent should have to make the choices I make. I need to remember that.

I wake up, I conquer the tasks of the day, I get an hour or two to myself after everyone is in bed and I walk throughout the day with my head up, eyes forward and I am always willing to help someone in need. If I lose the desire to help others I know that something is wrong. I know I've lost my focus. None of this is about me anymore. It's about being the best person I can be and play the best game I can with the cards I've been dealt.

So right now, a half marathon isn't a realistic goal for me. Signing up for it did get me moving again. I'm still running four days a week, just not 9 miles at a time. Although the jury is still out on wearing the bikini this summer...

History

2010-05-18T22:14:00.017-05:00

Here I am, days before I become a mother for the first time.

Here's Owen, I'm terrified and have no idea what I'm doing!

I'm better now. Owen is a great kid. I'd just had a miscarriage a week prior to this picture being taken.

This next photo shows Dermot only two months away....

Here's Dermot. Beautiful, I'm excited about my new guy. I knew how to take care a of a baby now. I can sit back and enjoy him.

Life changes fast. Life changes in an instant. You sit down for dinner and life as you know it ends. The question of self-pity.

Joan Didion

Dermot's first seizure November 17, 2006.

Sixteen again?

2010-04-03T14:48:00.005-05:00

Windows down, Diet Coke in my hand, Tom Petty's "You wreck me" playing way too loud on my radio, I pop a handful of the newly purchased M & M's in my mouth. For a moment, just a brief moment, it felt as if I was sixteen again, driving my beat up Mazda GLC in the spring air. Then I drove by my reflection in an office building's windows and I saw it. The minivan. I'm thirty nine years old and I'm a mom.

I got to thinking, what else am I? I'm a professional diaper changer, short order cook, personal care attendant, nurse, housekeeper, teacher, barber. All of these things I've become since being a mom.

What did I used to be? An professional event planner, a pretty good cook, an avid runner, a yoga enthusiast, a huge Oasis fan, a rabid Timberwolves fan, a recovering alcoholic, a sister, a daughter, a wife.

It's sad how those things just seemed to drop away slowly from my life. This week was a bit challenging, how do I entertain three kids all off from school and take care of my own interests and needs? I found out this morning that I didn't. I'm trying to become an avid runner again, but of course that takes time. I haven't run regularly since last fall and it's been an awakening to try again. My legs are sore, my lungs burn a bit and my motivation is lacking. Then having to negotiate time on the weekends with my husband, or decide what comes first, grocery shopping or a run. you know which one wins out. Then I find out that Oasis really did break up, are you kidding me? And don't even get me started on the Timberwolves.....haven't spoken with my brother in weeks, so not much of a sister, at least I'm still sober and still married.

My sister-in-law lives in town and visits frequently. She's single, has a great job and a cute house. She mentioned today that she's planning to run a half-marathon this summer, I felt a twinge in my gut. Oh how I envy her. I used to run a half-marathon every June, I really miss it. Training for it means at least, a guaranteed hour to myself every day, a feeling of accomplishment, not to mention a reason to try that bikini again. As I write this, I wonder what's stopping me? Is it just me? I just purchased a new double jogger that Dermot fits into, the weather is getting nicer every day, the boys mostly sleep through the night so I'm more rested and the sun is out later and later. Could it be that I'm the one taking these things that I used to be, away? Could I just be sitting in my house feeling paralyzed by my grief?

I know that once Ryan gets into school, my life will get more predictable, I know that there's way more life to live after forty, I know that I won't always be in this funk. But what I really NEED to know more than anything is that it's up to me to get up and get some of my life back. Go run, start cooking again, find another band to follow around the country, another sports team to cheer for....and remember that I won't ever be able to do everything I want, but I can do some of it. So I better get busy.

Yesterday

2010-03-09T14:29:00.004-06:00

Yesterday I was angry. I was angry that you asked me to drive you to the airport, I was angry that I did it. I was angry that your biggest problem today was your two-year old's temper tantrums. I was angry that you were agonizing over which cellular phone to purchase. I was angry when you told me how lucky I was to have a little boy who wouldn't wiggle out of my arms when I wanted to hold him. I was angry that you complained how tired you were after bringing all three kids to the zoo by yourself. I was angry that you keep telling me that in a few years things will be so much easier because my kids will be older. I was angry that you spent the winter in Arizona. I was angry when you thought your life was over because you broke up with your boyfriend. I was angry that you get to go to yoga class. I was angry that you keep telling me how sorry you are for me. I was angry that you called me a saint. I was angry that you get to take a shower EVERY day. I was angry that you didn't call. I was angry that you don't see how easy your life is.

Then, I slept on it. I realized that everyone faces their own reality, everyday. For some people, a smart phone purchase IS a big deal. Some people AREN'T conditioned to take three kids to the zoo. Some people NEED to believe my life will be easier in a few years. And to some people being alone is the SCARIEST thing they can imagine.

I think back to when Owen was two years old. My friend's two year old son was diagnosed with a serious neurological disorder that has potential for brain tumors, blindness and other REALLY scary conditions. I saw this friend about twice a week for at least a year and a half. When I heard about her son, I did nothing. I didn't call, I didn't tell her how sorry I was, I didn't bring her dinner, I did nothing. My reality, back then, didn't equip me with any compassion for others. I never in a million years thought anything like that could happen to my child or my family. So I did nothing. For that I am truly sorry. For that I can have compassion for others, even if they don't know the right thing to say to me, or the best advice to give. the point is they tried, they wanted to be of service in some small way.

Today I don't have to be angry.

Today I have to say thank you.

It's in.

2010-03-02T21:00:00.003-06:00

Dermot's surgery went well. Mom and dad have been learning all day how to use the tube and feed Dermot. He's been a champ through the whole process. Let's hope it's all worth it and that it will ultimately make him more comfortable.
Thanks to all for your kind words and prayers. I feel truly blessed to have such great friends and family.

G-Tube

2010-02-25T22:34:00.004-06:00

The Problem:

Aspiration syndromes include all conditions in which foreign substances are inhaled into the lungs. Most commonly, aspiration syndromes involve oral or gastric contents associated with gastroesophageal reflux (GER), swallowing dysfunction, neurological disorders, and structural abnormalities.

Complications:

Chronic lung disease may develop from repeated aspiration of refluxate.
Pulmonary fibrosis may occur over time secondary to repeated aspiration of small volumes of gastric secretions, promoting a progressive fibrotic pulmonary response.
Chronic bronchitis and bronchiectasis are also recognized complications.

The Solution:

Dear Parent/Guardian,

Dermot Sullivan, has been scheduled for a procedure at Children's Minneapolis with Dr. XXXXXXX on 03/01/2010 for their PEG Insert Standard G Tube. Here are the items to be done to prepare for your child's procedure:

HISTORY AND PHYSICAL EXAM: This must be completed within 7 days of your child's procedure. (This includes the day of appointment.) Please arrange this between 02/23/2010 and 03/01/2010. You will need to see your child's primary physician or pediatrician for this exam. The most important piece to this step is that you HAND CARRY a complete History and Physical examination from your primary physician/pediatrician's office to check in at the above medical facility.

DIET RESTRICTIONS: You will need to carefully monitor and follow these restrictions to your child's diet.
Clear Liquids until: 8:30 AM (2 hours prior to arrival) your child may have clear liquids. Please see the Clear Liquid Diet Guidelines.
Milk products and formula until: 4:30 AM (6 hours prior to arrival)
Solids until: 2:30 AM (8 hours prior to arrival)
Special Instructions: 2/24 Office Visit okay for Pre-Op

To meet energy needs, please include liquids that both contain sugar as well as those without. If your child is a diabetic, consult your physician for a diabetic meal plan.
Please call our office if you have any questions:

Clear Liquid Diet Guidelines

Allowed Not Allowed
Water Dairy Products (milk, cheese, etc)
Broth (no noodles) Cream Soups
Coffee Meat, Fish, Fowl
Tea, regular or decaf Red or purple juices, pop
Carbonated beverages Juice with pulp (orange, tomato, etc)
Gatorade (not red or purple) Bread, pasta, rice, potatoes
Flavored Gelatin
Plain juice popsicles Cereal
Plain hard candy Vegetables, fruits
Pedialyte Desserts (cakes, cookies)
Strained fruit juices (no pulp) Soft candy (chocolate, candy bars)
Honey, sugar, salt, pepper Nuts, seeds, popcorn

Please Note:
If you have Diabetes, please ask your regular doctor for diet and medication restrictions.
Oral laxatives may cause mild cramping, bloating or nausea. Always stay near a toilet when using laxatives.
Your child may have nothing by mouth for three hours prior to the procedure. Your child may have nothing to eat or drink after on .

Morning Medications: If medication is taken in the morning, please take 3 hours prior or hold mediation until after procedure.

REGISTERING: Please arrive at the above mentioned facility at 10:30 AM, your procedure will start at 12:00 PM.

GOING HOME: Your child may require between 1 to 4 hours to recover from sedation (if sedation is required) used during the procedure, please add this to your expected time to be at Children's. After your child's physician(s) feel that he/she will be allowed to go home.

If you have any questions or need to reschedule, please feel free to call the office and press option number 1 for scheduling.

Exit Scheduler

Fourth time

2010-02-23T14:28:00.002-06:00

Just as I crossed the last thing off my grocery list, I heard a muffled chime from my purse. I thought to myself, I wonder if its Dermot's school. Not really believing it was, but teacher Jan was on the other end of the line.

"Hi Sue, Laurie has administered the Diastat for Dermot", she said with a tinge of sadness in her voice. "Okay, I'll be right there" I said. I looked down at my full cart of much needed groceries and pushed them to the register. One part of me wanted to continue and check out as if nothing was happening, the other, wiser part said "get the hell out of here". Another abadoned cart at the grocery store.

This time I call Joe, "I'll meet you there" he says. Three stoplights later and a quick jaunt on the highway and I'm there. Wiped the tears away and ask the receptionist for admittance to the special education wing of the school. I walk briskly to Dermot's classroom. The other little boys are having circle time with the student teacher and look over quickly as I arrive, then they're back to their lesson. Dermot is lying limp in the school nurse's lap, separated from the other kids by a partition. He's still seizing, fifteen minutes after the Diastat is given. The nurse decides to call 911. Is this really happening? I think to myself, yep it is.

Dermot's eyes are open, mouth open, tongue stuck to the roof of his mouth. He's breathing, that's good, no response to stimulis (mom kissing him, dad calling his name over and over, etc.). A police officer gets there first, I think it's proctocol. EMT's are not far behind. They check his vitals, glucose, all are within normal range. Finally Dermot starts moving his hand, he searches for my hand. He's still not all there. Then I feel his stomach muscles contract. He wants to sit up. Absolutely Dermot! Let me help you up. Joe decides we don't need to go to the hospital, I didn't know what to do. Maybe that's why I asked Joe to meet me there this time. Thanks Joe, thank you for being there.

As I write this, Dermot and Joe are at the hospital lab getting blood drawn to make sure his drug levels are all in therapeutic range. Then we'll call the neurologist again. They'll tell us to wait and see, then give us a different drug to add to the growing list.

Tomorrow we're off to the gastroenterologist to talk about getting Dermot a feeding tube, but that's tomorrow. I'll write about that tomorrow...

Full glass of water

2010-02-02T23:33:00.004-06:00

I'm a full glass of water. Don't tip me, don't bump me, and please don't add anything else to my glass. If you leave me alone I won't spill anything, I won't get anyone wet and I won't go anywhere.

Occasionally when people ask me how I'm doing. My response is "I'm a full glass of water". I walk around my daily life functioning with a full head and a full heart.

My head is full of tasks: grocery shopping, remember to send the order form in Owen's backpack, remember to set the DVR for LOST, call Jenn, Tanja, Dad, Pat, Rebecca and the Toyota service guy about some alarming recall? Get Dermot's prescription refilled, go to the hardware store for a toilet thing-a-ma-jingy, make cookies, fold the laundry, decide what's for dinner, Find a new physical therapist for Dermot, confirm his eye appointment, schedule flight to Arizona. Empty the dishwasher, fill the dishwasher, vacuum the dog hair off the living room couch...

My heart is full of grief and apathy: Wake up, get the meds ready for Dermot-pulimcort, albuterol, prevacid, then get the milk in his cup (rice milk because we think he's lactose intolerant) add the packet of thickener (Dermot aspirates liquids so we need to thicken all his fluids), sit down and hold Dermot like an infant to feed him his milk, burp Dermot like an infant because he's not strong enough to burp without help. Bring Dermot to kitchen, place gently and correctly in his Leckey Mygo chair, secure the chest harness and waist strap. Prepare his breakfast of soy yogurt and banana that has been carefully smashed with a fork, don't forget his waterproof bib and his therapeutic "maroon" spoon. Wait you forgot his other meds: Topamax, Keppra, Carnitine and Depakote...five pills and one syringe. After breakfast, roll Dermot into the living room, put socks on, fit Dermot with his SMO ankle supports, lift him out of his chair, very carefully lower him down into the stander and begin securing him, foot pads, knees straps, hip strap, chest harness. Ready, 1, 2, 3 up! Find a toy of interest for his tray. Sit with him for 30 minutes...done. Release the straps and harness, carefully lift Dermot out of the stander, gently place him on the end of the couch, take off the shoes and SMO's. Undress Dermot, then dress Dermot in his school clothes. Comfortable shirt and sweatpants with sneakers. Don't forget his glasses. Get his jacket on, be sure to start with his left arm because otherwise his arms are too tightened up to stretch out through his sleeves. Go to the garage, open the van door, grab the remote for the mechanical seat, adjust it to the correct position, go back to living room get Dermot, take his glasses off before picking him up, bring to the van, place him in the seat, all buckled in, put his glasses back on, move the seat back into the van, close the door. Drive to school, turn into the parking lot, adjust the disability parking sign on my mirror, park the car. Get out of the van, lift the 53 pound Otto Bock Kimba stroller out of the van, prepare the straps, lower Dermot's seat down and out of the van. Lift him into the stroller, secure the straps and harness, kiss him good bye and watch the teacher roll him into the classroom. Two and a half hours of down time begins now.

So much of my day is filled with tasks, all day long. Tasks I would have never imagined ever doing, I do these tasks everyday and because I do them every day I forget sometimes to feel anything about my day. It is moments like right now, when the house is quiet and I'm up WAY too late that I can let those feelings creep in for a while, "pour out some the water" so to speak so that when I wake up tomorrow and do it all over again, it seems normal to me. I won't think about how un-normal my life with Dermot really is. I think that's why "the guy upstairs" keeps parents like me so busy for the first years of our new journey, so we don't feel all of the pain and all of the anguish too abruptly. I wouldn't be able to function and do all of the things I need to do to be Dermot's mom. I'm grateful for that, I'm also grateful for moments like right now. Quiet house, not so quiet heart.

Disability Parking

2010-01-20T13:04:00.007-06:00

Why Disability Parking?
Disability parking is not a special privilege, but a necessity. The spaces are needed to give people with mobility limitations the same opportunities to use public or private facilities as people who do not have disabilities.
Because some people cannot walk, or because a visible or hidden impairment makes walking difficult or hazardous, people with disabilities are at a disadvantage. This is particularly true in winter if disability parking is not provided or is left obstructed.
Disability parking spaces also provide extra space for people in wheelchairs when getting in and out of a vehicle.

Understand that misuse comes with consequences.

Non-certified persons who park in disability parking spaces can be fined from $100-$200

Hmm, I can't even tell you a time when I've seen this law enforced. I remember driving before this mattered so much to me, it wouldn't even occur to me to use one of these spots.

Unfortunately, since September 2009 I have witnessed a least ten out right violations at the Community Center where Dermot attends school four days a week. One woman in her late forties even parked in a spot right up front, while she attended a yoga class. Most of the women I've seen are moms dropping of their toddlers in the cold and the snow. I imagine they use that as an excuse and the fact that they'll "only be a few minutes" makes it okay.

I think not. You see, having a child with disabilites affords me VERY few luxuries, but having a parking spot available to me is one "luxury" I have absolutely earned.

So the next time you see someone parking where they're not supposed to I invite you to do the non-Minnesotan thing and confront them. I do every time and do they ever feel awful after I ask them if their legs work and if their children's legs work...

Thanks for indulging my angry rant...

Two moms

2009-12-25T15:05:00.009-06:00

I follow my eager five year old to the entrance of the unfamiliar building, "in here mama" he says. A flurry of activity is all around. Young fathers, toddlers all bundled up in winter gear and five and six year old boys sweaty and cold at the same time. "Daddy always goes to number 4 mommy", we push open the heavy metal door and find a section of the bench that isn't wet or blocked off by a little ones duffel bag.

"Okay Owen, where do we begin?" I ask, completely overwhelmed. "This first mommy, then my knee pads." Ok, got it. I struggle for the next ten minutes to properly equip my son for his favorite activity. "Whew, we did it bud!" I cheer. "let's go mama", he commands as we walk thru the crowd of other young termites.

I've suddenly become a hockey mom, I thought to myself. I wasn't prepared. Owen gets on to the ice and listens intently to his coach. I'm greatly impressed by his ability. Those skating lessons have paid off. He's smiling, I'm smiling. Then I feel a tinge and the tears start to well up in my eyes.

I'm not used to this feeling anymore. The feeling of being so proud of your son you could shout it to everyone in the rink. My unfamiliar feelings make me feel as if I'm a spy in "Normal Town". For a while now Joe has brought Owen to his activities and I have brought Dermot to his "activities".

I'm used to explaining why Dermot can't hold his head up as well because he didn't sleep, or that he doesn't sit up as well anymore because he's so drugged up. But this feeling of watching my oldest son skate so well and score a few goals, I haven't allowed myself for a while.

How do I mesh these two realities into one? How do I go from slipping on Dermot's AFO ankle supports to making sure Owen's skates are on tight? Don't even get me started on the fact that Ryan is learning a new word everyday and I can see him become a little boy right before my eyes.

Who am I? I'm a special needs mama, full of pain, strength and grief, I'm a hockey mom full of pride, joy and gratitude, I guess that means, I'm a mother.

Big brother Owen

2009-11-22T21:24:00.002-06:00

Epilepsy Awareness Month

2009-11-16T20:48:00.002-06:00

November is Epilepsy Awareness Month. I'd like to post this link to the 60 minutes profile that aired within the last month. I found it useful to watch. I also thought it was my responsibility to do my part to inform the masses.

Enjoy!

Thank you TEFRA

2009-11-15T22:52:00.017-06:00

Thanks to TEFRA and the CADI Waiver, here's the benefits...

Van modification:

With the push of a button the seat pivots and lowers down to the same level as Dermot's stroller, saves my back a ton of wear and tear.

Home modifications:

Instead of ramps in the garage, that require a foot of length for every inch, we opted for short steps to get Dermot's chair in and out of the house, works great!

Bath lift

This one was a bit hard to stomach. It meant that I was relying on a machine to lift my son in and out of the tub. That's my job, right? Well I tried it for the second time tonight and it works just fine. Dermot was able to float and kick around for the first time in months. We've had to give him showers in his bath chair for a while now. Little boys need baths. Dermot can have them again, hooray!

Feeding chair

A few months ago Dermot was still eating his meals in an old Fisher Price high chair, he wasn't supported enough and he was way too tall for it. This chair allows Dermot to eat, play and move about the main level of the house with ease. The chair raises and lowers down to the floor, tilts and reclines and it has a tray for toys. This is by far my favorite benefit from TEFRA. Makes everyday life at home so much easier.

Last thing we've ordered and are still waiting for is the changing table. It's similar to one you might find in a pediatrican's office, but has a fancy jungle theme painted on it to match Dermot's room. Benefits are obvious, saves the back from bending down too low.

We will be set for a few years now. I fought off all of this equipment coming into my home for a long time because it meant yet another step away from normalcy. I had to get used to the idea. I have. I'm grateful for how much easier this makes my job as Dermot's mom. Please let me know if you have questions about the program or any of the equipment.

Before and after

2009-11-06T14:36:00.003-06:00

"i can't imagine having a child with disabilites"

I get that a lot. So do my other special needs mamas. The truth is I can't imagine it either. Never in my lifetime had I even thought that it would be a possibilty.

If you've ever read the poem "Road Map To Holland" ( google it ), it describes the reality of having a child with disabilites like going to a country other than the one you planned on. I personally hate that poem. I think the author wrote it to make the people who don't have kids with disabilties feel better, comforted. Believe me, it's not at all like going to Holland instead of Italy. I've been to both of those places. They are not that different. Just the language and the food.

My worries before special needs:

Owen only slept for ten hours last night
Owen has a runny nose
Owen started throwing toys at other kids
This stroller doesn't fit in the back of my Mercedes Benz
Don't give him peanut butter before age three!
I hope I'm able to finish the book before book club meets
I wish my husband would come home so I can go to yoga
I have to remember to invite Debby and Sara over for the movie on Friday
What if Owen drops his nap before he's three?
Should I potty train at 2-1/2?
Should I let Owen wear a diaper or a pull-up to bed?
Is it okay to let Owen watch more than an hour of TV a day?
Am I ever going to wear this black bikini again or should I stick with the brown one?

My worries after special needs:

Is Dermot going to die?
Am I going to die before Dermot?
Is it okay to give Dermot five medications at a time?
This stroller doesn't support Dermot's head.
Will people treat me differently because my son is different?
Can I make it for three months without my nanny?
Am I going to have a nervous breakdown before age forty?
Do I have any friends that understand me?
Why aren't my old friends calling me as much?
Should Ryan be watching so much TV while I feed and care for Dermot?
How on earth can I bring all three kids to the park by myself?
When will I get a shower?
Should I be counting Dermot's seizures everyday?
Is the Depakote working?
I hope they can find a vein when Dermot gets his blood draw next Monday.
What will I do when Dermot is too big for me to carry?
What will I do when Dermot is too big for me to hold?
Will Dermot's brothers help him or resent him when they're older?
...

Dilemma

2009-10-04T14:23:00.004-05:00

It's 3:14 p.m., I'm walking feverishly down Edina Blvd. with Dermot and Ryan stuffed into the double jogger, the beagles leashes wrapped around my last two fingers of my left hand. I've got 12 minutes to get to the bus stop to pick up my 5 year old from the temporary bus stop.

My phone rings loudly from the stroller's storage pocket, I check the caller ID, MN Epilepsy Group....I answer it quickly. As I answer one of the beagles decides to poop. "hi Sue it's Vicki from Dr. Ritter's office. We have the results of Dermot's EEG last week." "that's great" I say. I've been waiting eight days to find out what kind of seizures Dermot is now having. You see, this past summer he was seizure free for about 2-1/2 months. It was glorious, to say the least. Then, as it has happened before, the seizures started to come back. The first few days he'd have just one or two, the week after that we were up to around ten and now, unfortunately we're in full swing again. On average he has about forty seizures a day. Some, when they occur, look like he's been struck by lightning. Others are a blank motionless stare for over thirty seconds. These ones are new. Dermot's brain has a curious way of evolving and defying the seizure medications that are present in his body. To date, he's had seven different kinds of seizures affect him and just as many medications.

"is this a good time to talk?" Vicki asks. It isn't a good time to talk, but realistically, the only good time to talk on the phone with me is after 8 p.m. when all the boys are asleep, but by that time, Vicki is at home enjoying her ordinary life and I'm completely wiped out from the day's events. "Sure?" I answer.

She begins with a detailed description and overview of what the EEG has shown about Dermot's seizure activity, I think I heard and understood about 65% of that, then she begins to describe FOUR different medications that Dr. Ritter would possibly suggest for Dermot's type of seizures. Just then the other beagle decides to take a dump on my neighbor's lawn. 3 minutes until the bus arrives....

As she is describing the some of the possible side effects of the medications, Owen gets off the bus. "how was your day honey?" LIVER FAILURE "Did you eat all of your lunch?" SLEEP LOSS "Who did you sit next to at lunch?" NAUSEA, VOMITING, HAIR LOSS.

She finishes talking and says "let me know what you decide about the medications". I hang up, start walking home and continue to talk to Owen about his day, hoping that I'll remember enough about my previous conversation to make an educated decision about what medication to experiment with next.

That was three weeks ago, I have yet to decide what to do. In that time it has occurred to me on more than one occasion that I should not be the one making this decision, the doctor should. I'm stuck. Dermot's behavior, appetite and sleeping patterns are all very predictable. Do I stay with what I know and live with 40 seizures a day or do I try something that will change his whole system and may or may not help his seizures? That is my dilemma...

First day of school

2009-09-10T22:09:00.002-05:00

So Dermot started his first day of ECSE preschool today. Monday thru Thursday mornings he'll be there. Weird. His first day went great, he's got four other little boys with varying degrees of abilities in his class. He thrives on all of the activity and loves his teacher.

Big Boy Bed!

2009-08-04T13:27:00.006-05:00

Grandpa Kessler made a custom bed just for Dermot! It's almost like big brother Owen's. But this one is higher, to save my back and it includes a removable railing for safety. I'm very grateful I have an accomplished carpenter for a father. Check out his website Franz GT Kessler Designs .

Dermot loves it, I swear he's sleeping better too!

The lost one

2009-07-29T21:33:00.002-05:00

There's a faint thud and then a loud cry from behind where I'm standing. Owen had lodged himself between the bathtub and the toilet, he slipped and out came the blood from right below his right eyebrow, his pure baby face was no longer pure. At ten months I thought to myself, it was to early for him so have a scar! As I began to chastise myself for being a bad mom, her car pulled up. I was running late and she and her son were already here. I ran out to the driveway to meet her, showed her what happened and started to cry. She tenderly reassured me that I was in fact not a bad mom and that he just needed a bandage. Okay, I can do that. She held Owen as I applied the virgin bandage to his eyebrow, and we were on our way. It was a Friday, we were on our way to "Movies for Moms" at the downtown theatre. It was a big deal for us when the boys were babies. We had an activity for the day, plus we could see a "grown-up" movie without the expense of a sitter. I looked forward to Fridays.

I met her at an ECFE class with my first son Owen. She was new in town and like myself, the mother of a six month old baby boy. We quickly became friends. Both trying to keep our days filled up so the common doldrums of first time motherhood wouldn't seem so lonely. We signed our boys up for a plethora of classes together, we had a standing play date every Friday, we started our own book club, we vacationed together, we talked nearly every day. We even managed to get pregnant with our second within two weeks of each other.

It was summer time, my due date was July 26th, hers, August 5th. We commiserated about how the intense hot summer days were taking a toll on our already overheated bodies, we spent nearly everyday at the pool, enjoying the weightlessness of the water while our firstborns went down the giant whale slide over and over...then July 22 came and so did my second child, Dermot Thomas Sullivan. Another boy, she mentioned how she hoped she'd have a boy so they could all play together, I secretly wished it too. A few weeks later, after a long drawn out labor, her daughter was born. Congratulations to us all.

We enjoyed our kids and our friendship. I thought how comforting it was to have a good friend and I could call often and know she'd be up for getting together or helping each other out if we needed it.

Then, I found out that Dermot wasn't going to be like everyone else. I remember driving home from the hospital, numb, I called my friend to tell her what I had just heard, she was the first non-family member I called. What was there to say, not much. I didn't want to hear much, she offered to hang out and help me forget, I appreciated that.

As I said, I was numb, that lasted a good three or four months, then came the flood gates. I tried desperately to hang on to my old self, participated in all of Owen's activities, brought Dermot along. He was, to all who did not know, "normal" looking. But I knew. I remember very clearly at Owen's Tumbling class, bringing Dermot is his stroller, lined up against the wall with her daughter and a few other little ones. I kept glancing over, noticing the how her daughter was grasping a rattle and shaking it with a enormous smile on her face, then looking over at Dermot and noticing his blank stare. I was officially unglued. I remember needing so badly some comfort as I tried to get through the class without the tears getting noticed. I packed up the boys in the car and started it up. Then the tears came, I couldn't hold them back any longer. Owen was in the back seat asking "mommy, why are you crying?" I couldn't stop. My friend stopped me in the parking lot and ran out of her car , she hugged me tightly. All I could say was "too many babies." I left feeling more alone and more different than I can remember.

Those next few months I was raw with grief. I was navigating my way through the land of special needs, meeting new therapists for Dermot, and myself. Meeting new doctors and firing the old ones. Shell shocked.

All the while, my friend would call almost everyday and want to get together. Although normally I'd want to, more and more often I would find reasons not to. You see, her daughter was reaching and exceeding all of her milestones. I wanted to be happy for her, but my heartache was too fresh, too raw. I wasn't capable of giving her anything. In fact I pushed her away. I knew I was doing it.

Why couldn't I tell her that seeing her daughter was too hard, that I felt like a crazy person when Owen ran off with her boy at the park one day, that it took all that I had to make it through the day without having a nervous breakdown? Because I didn't know either. I was trying to use my coping skills from my old life in my new life and they were not working.

It's been over a year since I've talked to my friend, I miss her every day. I'm angry at her for not sticking around, I'm angry at myself for not letting her. I know there are two sides to every story and then, the truth. This is my version.

Worst Case Scenario

2009-07-05T21:55:00.002-05:00

"Doctor, what's the worst case scenario for Dermot?" Joe asked as we were sitting in the epilepsy ward, January 2007. "worst case, your son will be wheelchair bound for the rest of his life", said the doctor.

I've been filling out a lot of paper work lately for Dermot. We've started with a new physical therapist and I'm attempting to apply for TEFRA thru the county. It's a supplemental healthcare that we'd pay a premium based on our income, then we'd receive the benefits that kids on Medical Assistance receive. It pays for things like home modifications, van modifications, durable medical equipment, and ton of other things.

The problem is that every form I fill out, every piece of equipment we purchase takes us another step away from normalcy. I'm usually okay with that, but today I'm sad about it. I've seen a lot of three year old's today. A typical three year old talks in complete sentences. A typical three year old is almost potty trained. A typical three year old wrestles with his older brother, splashes around in the pool, starts preschool, gets a big boy bed, feeds himself a messy cupcake, charms the pants off our dinner guests and runs into the counter and bonks his head, then gets up and says: I'm ok.

My three year old does not do any of those things. People will tell me to focus on the positive things, to appreciate the things he can do and be grateful for what God has given you and your family. Not today, today I am sad about it. I want so badly for Dermot to wake up tomorrow and say "good morning mama" and walk in to the kitchen and demand Honey Nut Cheerios for breakfast. I want Dermot to have friends and playdates and activities other than therapies and doctors appointments.

I'm the mom I thought I might be. The one that drives the van with the lift, parks in the handicapped parking stall and drops her kid off at school while the other mothers watch politely. I'm usually okay with it. The acceptance part of this is getting easier. But for some reason today I'm sad about it. Maybe it's because Dermot's birthday is coming up, that's probably it.

Random thoughts from Target

2009-05-30T23:46:00.003-05:00

insurance companies....Topamax...where did I park? where's the $ coming from? smile and try to remember that woman's name...I hate Jon and Kate plus 8...my arm is getting tired from holding this basket I should have gotten a cart, but then I would have spent too much money, I curse you Target!!!! check the visa bill...we haven't sold the casco house yet...my stomach hurts...I'm doubting my program because of my codependency...write this down before I forget...when does the childcare end? why is Dermot still sick? why does his body jerk and tremble when he has a fever? what is the Topamax doing to him? why is there not just one doctor instead of six in charge of Dermot's health? Is Dermot going to die before me? I'm calling the insurance company now.

Crisis averted

2009-05-10T22:23:00.006-05:00

I'm writing on a piece of paper in a plane on my way home from a weekend away in Chicago with my mom. Last night I was awoken by Joe calling at 4 a.m.

Dermot had been having seizures every thirty seconds for the last half hour.

I'm always amazed how I function in a crisis. No time to freak out. I know that the maximum time the doctor wants a seizure episode to last is 10 minutes, then we're supposed to take action.

Joe was alone with the three kids. Two of them sleeping, as typical kids do at four o'clock in the morning, the other's brain, short circuiting every half minute.

One: what's going on?!?
Two: Focus Joe
Three: time to administer the Diastat (rectal Valium), this step was hard. You see the whole time Dermot has had his disorder, we've never had to use this emergency medication. It's about two tablespoons of creamy medication packaged in a syringe that is inserted into Dermot's rectum.
Four: call aunt Katy on the other phone, get her over to the house so Joe is not alone.
Five: call neurologist on call.
Six: wait for doctor to call back...
Seven: answer call from doctor, turns out we did everything right. Dermot stopped seizing, started crying and started to relax and feel the effects of Valium. Katy arrives, Joe is not alone anymore. Dermot will fall asleep shortly.

Crisis is over. It takes me two hours to get back to sleep at my hotel room.

We've made many changes since I last posted. Dermot has been off the ketogenic diet for over three weeks, we added a new drug (Felbatol) to Dermot's regimen, after four completely sleepless nights we deleted that drug and added Topamax. For about two weeks, Dermot's observed seizures went down from 40-50 per day to 5-10 daily. A HUGE improvement, we even had one day when he only had four seizures. Amazing, right?

There's a virus traveling thru the family, it's Dermot's turn. After Dermot calmed down, Joe took his temperature, 101. My theory is that the fever caused his breakthrough seizures, let's hope so.

Eight: Prepare for the future as much as we can and let God chart the course on our journey with Dermot. Pray for him.

Peace out.

Swing Part II

2009-04-05T16:01:00.002-05:00

Swing

2009-04-01T22:12:00.002-05:00

So there's this other blog from a mom I read. She's got a daughter with a seizure disorder, she's wonderful about keeping you updated in the nuks and crannys of their lives and updates her blog frequently. I seem to be avoiding this blog.

I have an excuse I suppose. We moved two weeks ago, five blocks away from where we were before. It seems like that should have made it easier, not so. Managing the three kids and the mayhem was a nearly impossible task. Moving day included two trips to the emergency vet for our youngest beagle, who decided to see if she could eat an entire bag of cat food, she only got through two pounds of a four pound bag, yuk. A VERY cranky, teething 10 month old also added to the mix, hurray! The saving grace was Owen was having a blast ALL-DAY at the Sayles household, what a great day for him!

Two days before the big move was Dermot's quarterly neurologist appointment. At this appointment we discovered that Dermot had officially gained ten pounds in six months, which made me fuming mad. You see, I had been continually calling the dietician who was supposed to be managing Dermot's caloric intake. Each week I would call and inform her that Dermot gained another pound, not enough was done to control his calories. He was given the calculated amount for a typical two year old. Ridiculous.
So we are now in the process of tapering off the diet and trying another drug. Felbatol to be exact. With this drug comes side effects and bi-weekly blood draws to check for elavated levels of something that may cause kidney failure at the very worst and sleeplessness at the very least. That's not great.

I'm also on a mission this spring to get an appropriate adaptive swing for Dermot at Wooddale Park. I think it's going to be a process. I have already been shot down once, the city states the current swing is ADA compliant. That doesn't mean a lot to me if Dermot can't sit in it comfortably and swing with his brothers. I'll keep you posted on my swing crusade.

I'm going to go to bed now.

Letter to Dermot

2009-03-06T23:03:00.002-06:00

"Letter to Dermot"

Dermot,

I’ve been trying to put off this letter for quite some time. I just gave birth to your little brother and have realized how heartbroken I am over you. I look at pictures of you and get a tinge of sadness where I should get joy. I see the things you cannot do and the things you won’t be able to do. I’m so sad about it. I feel responsible, so much more than anyone else knows. I look back on the day you had your first seizure and I’m so angry with myself that I didn’t know what was happening. I feel like the length of time was my fault and that it caused more damage to your brain than was necessary. I’m so sorry. I know that you deserve the best in everything for your life and my regrets run deep.

God has a plan for our family, I know. All of the challenges that you go through help make us stronger, but I wish more than anything that I could take all the pain away, all of the drugs, all of the therapy. I sometimes imagine you as a normal little guy getting into trouble and running around. It hurts. You are so beautiful and special in ways I would have never imagined. I wonder if I will ever be able to overcome the heartbreak. I don’t know. I hope so. I wish sometimes I could just hold you forever and make everything ok, I know that won’t happen. Sometimes I don’t know what to do with my feelings about you, I feel distant and frustrated. Please know that those feelings are all about me. I don’t want them to affect the way I feel about you. I want the best for you and I will give you the best I can as your mother. I hope that you can grow with me while we figure out what your life is going to be like. I want to be your advocate, although I’m afraid sometimes that I’m going to make the wrong decisions regarding your well-being.

I promise to follow my instincts and be true to you. I promise to protect you at all costs and be there for you always.

I'm glad to know that we are surrounding you with people who love you and will take care of you. Your brothers will be your friends always and will be there for you when I cannot. I will teach them how to love and care for you with great compassion and understanding, or maybe I should say, you will teach them, as you are teaching me and your dad.

I resist new things for you sometimes because I don’t want to see you in pain. I get angry when you are sick because you have been through far too much in your life than someone should have to go through in their entire life. I was angry at God for a really long time about what happened to you. I know now that that wasn’t helping anyone. I need to see the real picture. I need to let God help us, help me. I can no longer live with the illusion that I can control the outcome of your life. I can love you with everything I am, I can care for you and try to make the best decisions for you that I can, and I can be with you every step of the way.

I keep thinking that if I get this thing or that thing for your life will be better, who knows. I’m working really hard to change my image of what my life should be like and what my kids and family should be like. My expectations should stretch and grow with every experience and never get stuck with one idea or one picture in my head.

I love you my sweet Dermot...

Enough?

2009-02-05T22:04:00.003-06:00

Am I doing enough? I ask that question to myself on a daily basis. You see I have help with the kids now. It makes a tremendous difference in our family's lives. I am no longer completely wiped out at the end of the day and I no longer dread the next day. I cross things off my "to-do" list every day and boy is that satisfying. I make dinner almost every night for the family and I get to take a shower every day! If your a mom you'll completely understand that one. But there's a nagging feeling I've had for the last month or so. Am I doing enough?

Joe is in the second month of Dermot's Hyperbaric Oxygen treatment, that means he takes Dermot out of the house from noon to 3 p.m. everyday. It's weird, not hearing his singing or having to wonder when he's going to wake up from his nap.

Is the therapy working? Do we notice any differences? Not really. If anything, I've noticed his seizure activity has increased and he seems more out of it. I can't really explain the feeling I get when I think about Dermot except to say there's a silent panic in me. If I stop to listen it gets painful. So most times I keep my mind running. I glob on to things I can control, things that give me comfort. Chocolate chip cookies, running, friends and my other little boys(I know I can't control them). A strange mix hmm?

I have friends that try every new treatment, see multiple specialists and surf the internet looking for possibilites. I watch them I worry that I'm not like them. I don't have the energy or desire, I'm not sure what it is. But it comes down to the same question, am I doing enough?

We're still waiting for some tests to return from Mayo. We had them done in mid-December and we still do not have any results back. They were doing a microscan of Dermot's chromosones to check for deletions or abnormalities and a test for a male form of Rett's syndrome. Those results are in the back of my head all the time.

I know I love my family and ALL my boys with great intensity, I'm grateful for my friends, my husband, who does more for me than he'll ever know and my crazy life.

But am I doing enough?

And Ryan too!

2009-01-22T23:25:00.002-06:00

Ryan and I are taking swimming lessons together and he's having a blast! Puts his face in the water himself and splashes like crazy. He also got his very first ear infection, and he made it a double! He's recovering from it, let's hope the sleeping habits will improve. Joe and I are walking zombies from being up with him all night!

Babies are great, right?

Kindergarten here he comes!

2009-01-22T23:18:00.004-06:00

So Owen and I just went to visit his new school for next fall. I can't believe they make you register so early! He loved his classroom, he's excited to ride the bus and eat lunch at school! He's growing up so fast. What a blessing he is.

Dermot's school

2009-01-22T23:09:00.004-06:00

Dermot's third day of school is tomorrow. He goes to a new transition class every Friday morning until the end of the school year. I think when they say transition, it's a transition for the parents. It was very strange to drop him off for the first time and just leave. I was worried about if he started to cry, or get upset. Would the teachers know how to calm him down? Would they hold him like I do? It's one of those moments when I have to Let go and Let God...

He's doing really well. There's at least one adult per child, he gets a morning stretch, a workout, book time and a song of the day. What more could you ask for?

Breathe in Breathe out...

2009-01-08T21:11:00.004-06:00

Dermot started his hyperbaric oxygen therapy this past Monday. He'll go Monday thru Friday for the next eight weeks. We're not hoping for a miracle, but we are wishing for more alertness and better cognitive ability. We'll see.

See link for more information: www.lifeforcetherapiesusa.com

I'll keep you posted on his progress.

Year end.

2008-12-30T22:51:00.004-06:00

What a year it's been, each month giving us new challenges, new joys and new heartaches.

January: 5 months pregnant, I jetted off to visit my brother in LA for the weekend, only to return and rushing to the hospital to be with Dermot as he suffered an awlful bout of RSV and pneumonia. Six nights later he came home, I swear he's different. No longer able to suck his thumb and drink efficiently out of a bottle, Dermot left something at Children's Hospital that I wish we could have back.

April: Owen turns four! Just days before I'm to deliver #3, we had a glorious time at his party. All his friends and classmates joined him at Pump it Up! Yipee!

May: Ryan Joseph Sullivan joins our family after a day and a half of labor, one push is all it took! What a blessing! So begins the battle for sleep.

August: Countless visits to and from family! Ryan had his first airplane ride at three months, thanks to uncle Bill! Ryan sleeps thru the night for the first time!

September: Owen starts pre-k, quickly makes friends with lots of great kids. Dermot gets admitted to begin the Ketogenic Diet. It's not as smooth as we'd hoped, but by the end of the month he's found a groove...

October: Trick or Treat! Owen speeds thru the neighborhood as a NASCAR driver, cleans up with a full pumpkin of candy, which I make him share with me!

November: I hosted Thanksgiving, with a little help from everyone. That was my favorite holiday!

December: Christmas has come and gone, plans changed at the last minute and most everyone celebrated with us in Minneapolis. What a blessing that turned out to be! Cousins were here to play with my boys, sledding and ice skating, it was a great time.

I'm having a hard time believing 2008 is over. Weird.

I have to say, I'm especially grateful for the outpouring of help and concern from our friends and family. It's touched me in ways I won't ever be able to tell you personally. I have made some connections with some fantastic ladies this year, from my Wednesday Group, my parent support group and my parenting class. I'm glad to know all of you!

As we approach 2009, there are a lot of unanswered questions regarding Dermot's condition. We are waiting for more test results from Mayo late this month. We are due for a round of appointments this month. The neurologist and the phyisatrist. Dermot also starts a transition class at Edina special ed one day a week. Plus for the next eight weeks he'll be getting hyperbaric oxygen treatments everyday for and hour each time.

I'll update these as they occur. Until then, thank you for being in our lives and have a happy and healthy new year!

Someone I love

2008-12-20T14:56:00.001-06:00

Someone I Love

By Lori Hickman

Someone I love relies on me in ways you will never understand. Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted. Someone I love will never have the opportunities that every child should have. Someone I love will need unconditional love and support after I am gone - this frightens me to the core. Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others. Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet. Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world. Someone I love has needs that require more time and energy than I have to give. Someone I love has needs that mean I am not able to meet basic needs of my own. Someone I love has needs that have become the driving force behind major decisions my family makes. Someone I love has changed me in ways I will never be able to describe. Someone I love has taught me about love and about the really important things in life...

© Copyright 2000 Lori Hickman. Originally published as the dedication to Living in My Skin, The Insider's View of Life With a Special Needs Child by Lori Hickman. Reprinted with permission of the author, all rights reserved.

Dermot's story...

2008-12-03T21:32:00.009-06:00

How did we get here? It was November 17th, 2006. Joe had left earlier that day for his annual hunting trip out to South Dakota. My brother had just arrived to drive up to my mom's place in McGregor, MN with me. I wanted a little help since I'd be with Owen who was 2-1/2 and Dermot who was almost four months.

The car was packed, I was trying to calm Dermot down. He was trying to recover from a cold and was crying hard, something he did quite a bit in his first few months of life due to a case of reflux and pyloric stenosis(google it). I was struggling to get him to stop crying, and then, he stopped instantly. Whew, I thought. I set him down in the bouncy chair and finished putting everything in the car. I came back and looked over at Dermot and he was still in the exact position he was in before, I thought that was a bit odd so I went over to him. His eyes were fixed to the left side and he was pulsing his left hand and foot ever so slightly. I thought that was strange so I called the doctor's office and told them what Dermot was doing, she told me a nurse would call me back...in the meantime, I asked my brother to come look at him, we brought him upstairs to his room, I undressed him and noticed his back muscles on the left side were very tense. I was really worried now, 10 minutes had gone by, I called the doctor's office and told them I was bringing him in.

I got him in immediately. Dr. Cantor looked at him for a second and asked if his staff had told me to bring him here. I said I was waiting for a phone call back. He told me that Dermot was having a seizure and that an ambulance was on it's way to take him to Children's Hospital. They scrambled to find oxygen and some Diastat (rectal Valium) to stop the seizure. They were out of the Diastat. All the while I managed to stay pretty calm. It hadn't sunk in yet.

The EMT's arrived, they literally grabbed Dermot and ran him out to the ambulance, half dressed on Hennepin Avenue on a cold November day. I followed behind and buckled myself in beside him in the ambulance. The lights and sirens were blaring. It was starting to sink in.

We arrived at the emergency room, they wheeled him away to a trauma room and started to work on him. They stripped his clothes off, administered Atavan and another mediation to try a stop the seizure then they intabated him. It was like an episode of ER. I was told to stand back, as I listened to some of the ER nurses joke about the "fish lips" they gave him with the tape that held the tube in his mouth. I remember reminding them that he was my child and that I could hear them. They stopped laughing.

There were about 15 different medical professionals working on Dermot, I was sitting in the corner, alone, holding Dermot's onesie. It sunk in. I needed someone. Joe was out of cell phone range, all his friends were in South Dakota already, except one. I called and got a hold of Alan. He said he'd try his best to find him. In the meantime, I called my dad to be with me, to hold me up.

The seizure lasted for over 2-1/2 hours.

They'd managed to stop the seizure with medication, but they had to intibate him because the meds didn't allow to breathe on his own. After an MRI and a CAT Scan he was sent to PICU. I remember passing my friend Shannon, who works as a nurse in the PICU, I was comforted by her face. They did a spinal tap and then left him to be monitored.

Joe finally got word about what had happened and was racing back to Minneapolis. He was four hours away.

Dermot was in the PICU for 24 hours and the regular ward for another two days, he had an EEG and it was inconclusive. The doctor decided is was a febrile seizure because he was getting over a cold (although he wasn't running a temperature).

We went home three days later. As far as we new, Dermot was okay. He was put of Dilantin as a precautionary measure. All was good for about a month...

Right before Christmas time I had started to notice a little facial tick in Dermot. I called the doctor, he told me to up the dose of Dilantin and call me after the weekend. No change, the doctor still hasn't called be back...

We were referred to another neurologist, as the facial tick was getting more noticeable. He scheduled us for a 24 hour video EEG. It was in early January 2006. We waited and the day came to bring Dermot to the pediatric epilepsy ward at St. Paul Children's. I remember feeling terrified by what I saw. At least five or six kids with helmets on and wired up to monitors all sitting in the main area. I was not prepared for any of this. I wanted out. My baby wasn't like these poor kids.

They applied 20+ probes to Dermot's head (all the while, he's screaming). They use this really smelly glue and have this loud dryer to make sure the probes don't fall off. Then we wait, they record his brain activity for 24 hours.

The next morning Dr. Ritter arrives in the ward and we wait to see him. We waited a good four hours...he asked us to come into his office with his assistant. The nurses will hold Dermot for us. He told us the Dermot's brain activity was abnormal. (It hadn't sunk in yet...) We asked questions, I don't remember what they were. I remember Joe asking what the worst case scenario would be for Dermot, he said Dermot would be wheel-chair bound for the rest of his life. Joe lost it, I felt something come over me to hold my composure. I asked a few more questions, I don't remember what they were...our 7-month old son, wasn't going to be like everyone else. (It still hadn't sunk in) I didn't cry, I was numb...it would be months before I could feel the grief.

Since that day, the day my life changed forever, we've had countless tests and seen countless specialists. We went to the Mayo Clinic. We have yet to receive a diagnosis for Dermot. He has epilepsy, but all that means is that he's had more than one seizure in his life and he has global developmental delays.

We are returning to the Mayo Clinic this coming Wednesday for a follow-up visit. The doctor will decide if he qualifies for any additional tests because his symptoms have changed since she last saw him 18 months ago.

To be continued...

Control

2008-11-28T22:07:00.003-06:00

Merriam-Webster's definition of control is as follows:

2 a: to exercise restraining or directing influence over : regulate b: to have power over : rule c: to reduce the incidence or severity of especially to innocuous levels

It's funny how obsessed the world is with the illusion of control. It's funny how the quest for control can make a person insane. It's also funny how out of control we really are. I can plan for things to happen. I can make sure I have the right supplies for any situation, I can tell everyone in my life what to do, when to do it and why to do it, but inevitably they will do it the way they want to do it.

Tell a four-year old how to brush his teeth and he will insist on using a different toothbrush, putting the toothpaste on himself and most likely he will go to a different bathroom to get away from me. It's maddening!

Prepare yourself for the daily occurrences in life and unexpected things will always happen.

As I hosted Thanksgiving dinner this year I was very conscious of every one's need for a taste of control, I was okay with it. The saying "too many cooks in the kitchen", I'm not so sure. I made the turkey and stuffing, others brought a dish or two of their liking and poof!, a beautiful feast was created by everyone in attendance. I am thankful for my ability to give up control of everything.

I've been letting go of my desperate need to control my life. I realize that it's a symptom of a greater need, to feel safe and sane. Fear does funny things to a person's character, but that's an entirely different topic.

Dermot has been waking up in the wee hours of the morning crying like crazy. It's the same time every night. We pick him up, bring him downstairs, wrap him in his favorite soft blanket and hold him for as long as it takes for him to fall asleep again. We don't know why he does this, all I know if that if I hold him tight he'll stop crying. He's changing again, it scares me. My challenge is to not have my fear turn me into a control freak again.

I have a prayer that a good friend shared with me.
I read it everyday at least once:

GOOD MORNING,
THIS IS GOD.
I WILL BE HANDLING ALL
YOUR PROBLEMS TODAY.
I WILL NOT NEED
YOUR HELP SO
HAVE A GOOD DAY.

Keto diet

2008-11-25T15:32:00.002-06:00

How's the diet going? It's going pretty smoothly in the last few weeks. Dermot's partial onset seizures are gone, now we are just fighting with the Tonic seizures. He still has around twenty of those a day. If you didn't know what to look for you wouldn't notice his seizures. His left arm goes straight up, his eyes look up and his body tenses for a few seconds, then he just resumes what he's doing. The brain is an big fat mystery! Dermot's neurologist wants to try just the diet for another month, then he might want to try a different drug for the tonic seizures. I'm not for that. Apparently the most common side effect for the new medication is sleeplessness. No thank you! We've had enough of that in the last 2-1/2 years.

We discovered what meals Dermot will eat and have decided to sick to them. Here's a sample of what Dermot eats each day:

Breakfast:

1/3 c. of whipped cream
two tsp. ground beef
1/3 slice of american cheese
two Tbsp. of butter
1/4 c. of peaches

Lunch:

1/3 c. of whipped cream
two tsp. chicken breast
two tsp. green beans
two Tbsp. of butter
1/6 c. of applesauce

Dinner:

1/3 c. of whipped cream
one Tbsp. ground beef
1/4 c. peas
two Tbsp. of butter

Sound good?

Milestones

2008-11-17T22:46:00.005-06:00

Ryan's sitting up all by himself, I'm so proud! I was going to go into some long essay about how important milestones are and how easily they come to most babies, but I won't. I'm just happy with my little Ryan today!

Invisible?

2008-11-11T22:10:00.002-06:00

So, here's something I've noticed and it's a big fear of mine. I fear that Dermot's becoming invisible. Not really, but to the outside world, to the "nice" people we meet or already know. To friends and even some family members, it seems as though he's not there. The polite look and then quick look away, the attention that gets showered to Owen and Ryan is not the same for Dermot.

Why is that, I wonder. I don't really wonder. I've been there myself. I was the one who shyed away from anyone different. Not on purpose, just out of fear. Not knowing how to treat a child or what to say, do I touch him? Can they hear me? Can they see me? I'll just pretend they're invisible.

We've gone to several outings, the country club, Target, the Children's Museum and so on. I've started to notice.

So, I want to tell you about Dermot.

Dermot is a beautiful boy. He smiles, he laughs, he screams with delight. He has more grunts and moans than most babies have, and I can understand most of them. He shakes his head no when he's all done with something, he calls out for attention when he wants to play, and he whines when he's sleepy or sick. Dermot thrives off of human interaction. He loves being talked to. We're not sure what he can see because of his vision impairment, but the moment you come down to his level and say hello, he knows you're there. He doesn't have sensory issues, so grab his hand when you say hello. He loves when our house is at it's most chaotic. He loves listening to the dogs wrestling and barking, he giggles when Ryan is crying close by and loves when big brother Owen screeches and howls for him.

He's not mobile, he can't sit up on his own or crawl. He hangs out in "big Blue" a Tumble Form chair or on the floor or in his stander (3 x's a day). Or the "stroller" when we're out and about. He can't walk up to you and get your attention, he needs you to come to him, he needs you to say hello. I need you to say hello. He's my son and I love him with all that I am, he's your grandson, your cousin, your nephew, he's not invisible.

Is there anything I can do?

2008-10-28T20:42:00.002-05:00

A lot of people in our lives have been gracious enough to ask "Is there anything I can do for you?" Almost always my response has been: No we're fine, thanks. But that's not completely true. Growing up the way I did I learned a an early age to take care of myself, by doing everything by myself. Well in our situation with three young kids, one with special needs, I can't do everything myself.

This seems a bit shameless, but what the heck. I've decided to create a list of things friends and family can do to help my family.

1. Call or e-mail us-even if we don't have time for a long conversation, a message telling us you're thinking of us really feels good. My friends Pat, Lisa and Debby have called just to let me know they're thinking of us, it's nice to have a cheering secton.

2. Bring us dinner anytime-what a huge favor, we now have a freezer in the basement that houses ready to heat meals. It saves me so much time. Thank you to Susan and Dixie for helping us stock the new freezer this summer...

3. Offer to have Owen over for a playdate sometime-With three kids it's hard to get around for activites without help, but with Dermot it's even harder. His special stroller is 50 lbs. and he's 31 lbs. so it tend to be too much heavy lifting for a trip to the library or a museum...I feel bad that Owen just hangs out around the house most afternoons, he'd love a change of pace. I'd call you but it's bad manners to invite my son over to your house, right?

4. Ask questions-We get the "How's Dermot?" question daily, we have a standard answer of "He's doing okay, I guess". Sometimes it's better to get specific. What's your life like now? How are you handling all the stress? How about them Twins?

5. Remember who we were before all of this and remind us-Sometimes I get so wrapped up in the sorrow and pain the comes with a special needs child, that I don't want to go out, I don't want to try new things or meet new people, it's like a black hole...

6. Read the blog-it's so nice to talk to you and find out you've read this, then I don't have to explain what's going on over and over again.

To be Continued...

The Gingerbread men

2008-10-27T23:01:00.002-05:00

I'm mourning the loss of some of my friends who turned into The Gingerbread Men...

I've shared this reading before with friends. It still touches me and I read it often.

The Mother at the Swings
by Vicki Forman
It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?"

Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.

And, yes, he also loves to swing because all children love to swing.

I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.

"He really loves to go high," the mother at the swings says. "He's not afraid at all."

"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."

"Well, he must have other ways of knowing," she says. "Because he definitely loves it."

My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two -- variations on "muh muh" -- which he uses indiscriminately for "more" or "mama" or "open." I have watched my friends' newborns become toddlers and school-age children who can walk and laugh and talk and read, all while my son continues to function at the level of a two-year-old.

And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.

When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were "rocks" could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth.

I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: the mother at the swings.

The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this?

She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.

~

It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.

It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.

I know nothing about special needs

2008-10-19T22:22:00.002-05:00

This is a fantastic writing from a mom of a child with special needs. I warn you, it's a bit political...

I know nothing about special needs.
Posted 10/17/2008 3:02 AM CDT
Let me repeat that, I know nothing about special needs.

Yes, my son Elias has multiple disabilities that affect his balance, movement, vision, communication, and breathe, and yes I’ve immersed myself in the disability world by reading books, blogs, articles, laws, and enough bureaucratic paperwork to fill a truck, but I am merely a tourist in this world, hoping to learn the culture so I can advocate for my son.

I can’t claim to be an expert. I’m not even an insider. I’m just a mom who loves her child.

For McCain to say that Sarah Palin “understands special needs better than almost any American I know” just shows how out of touch he is with the disability community.

Does he know anyone with special needs?

Because surely they would know more about living with disabilities than the people who love them.

To claim that a new mother of a child with Down syndrome knows more about special needs than any other American is an insult to the hundreds of thousands of people who every day face the barriers of an able-bodied world. Or who despite cognitive differences go on to earn a Phd. Or who play ice hockey without full sight or compose music they can’t hear. Or…

…the list goes on.

And what about the writers, speakers, advocates, and organizers who fought for the Individuals with Disabilities Education Act or the American with Disabilities Act?

I think they know a little more about special needs than a governor whose only disability related act was to cut funds to programs that support people with needs. Who sat across the table from me and a roomful of people with autism, Down syndrome, cerebral palsy, vision loss, and other disabilities, as well as the people who love them and work for them, and smiled as she listened to our stories but failed to grant the Key Campaign the funds we requested to increase community services and research.

And now she has her baby Trig.

You’ve probably seen him on the national news. He’s cute huh? I cried when they showed his sister Piper licking her fingers and smoothing his soft baby hair. I’d like to see more children with disabilities on TV.

But not as political pawns used to pull heartstrings.

We’d see more children with Down syndrome, if 9 out of 10 women didn’t choose to abort their babies after receiving the invitro diagnosis.

That’s 90 percent. 90 percent.

If McCain and Palin override Rowe vs. Wade, while simultaneously enacting a spending freeze, how would these all these Ds babies receive services?

And believe me I want Trig to have more peers, but they won’t all be born into families with the means to hire caregivers and privately pay for therapy, medical appointments, and brain-building sensory toys.

And what about the autism epidemic that McCain claims Palin also knows all about?

Sure she has a nephew with Autism and cousins on the spectrum but, again. this does not make her an expert. I have a cousin whose gay but I can’t claim to speak fro the GLBTQ community.

I know a little bit about cerebral palsy, visual impairment, and cognitive delay from my son. Enough to fill a story or too but I couldn’t come close to finishing a book, let alone claim to know enough about any of these diagnosis to know what is best for other children who experience their own unique versions of symptoms, impairments, and skills.

Just because I can play soccer and ice hockey does not mean I can play basketball or golf. And don’t even think about getting me to do the long jump.

I got no jump.

And I guess this is what also struck me about McCain’s comments, as if he could sweep whole populations of people into the idyllic face of baby Trig.

As if Sarah Palin has even had time over the past six months to immerse herself in the world of special needs, while also campaigning for the Vice Presidency. She may be smart, motivated, and gutsy but she’s undergoing a crash course in foreign policy, media relations, debate training, and Washington politics, not Medicaid, therapy, disability law, and advocacy.

And she hasn’t even gotten to IEPs.

Or stood next to her comprehending son as she wrestled with how to answer a curious neighborhood kid’s question, “What’s wrong with him?’

Trig is still a baby and everybody loves babies-- especially when they don’t come attached to an oxygen tank or a feeding tube or startle the cooer with an obvious deformity on their hands or face.

I do not mean to underestimate the profound affect of having a child born with a diagnosis, but right now he is not a whole lot different than other babies. Sure his features may reveal his chromosomal differences but what he needs right now is sleep, milk, snuggles and fresh diapers.

Like most babies.

Even after 94 days in the NICU, multiple surgeries, and medical data that practically guaranteed Elias would have special needs I didn’t really understand what that meant when Elias was still spending the bulk of his time nursing and sleeping.

Sure we had a lot more professionals involved in our life than most new families and we had a portable oxygen tank in our living room, and a variety of unpronounceable medications to dole out, but I still didn’t really get it.

I still don’t.

Even now, with multiple diagnoses, I still hold onto a vision of Elias being “normal” one day.

I can still separate myself from my son and walk unencumbered away from the world of special needs.

I won’t.

But I can.

And that’s what separates me from Elias, and every individual who lives with special needs, and it’s why those of us with full capabilities cannot claim to be experts.

Its why we need to listen to those who truly understand because they live it, and can’t be fooled by political rhetoric to believe that substance follows their fashionable claims.

My beautiful boys

2008-10-17T22:58:00.001-05:00

As photograped by wendybphotos.com

Whew!

2008-10-09T23:14:00.007-05:00

Well Dermot is eating again, hooray. He had three square meals today. He seems to be in better spirits too. In case you're wondering, this is a picture of Dermot when he was 5 months old having his first taste of rice cereal. I just thought it was cute.

We also found out today that Dermot does not have any of the scary terminal genetic or mitochondrial diseases that he was tested for last month. I didn't make this news public so if I've been on edge for the last few weeks you now know why. I can stop thinking all of the morbid thoughts I was thinking and move on, for now.

I also fired the nanny this week, bummer. She had a different style than I'm used to and didn't think it would work with our family. No worries, I have an interview lined up on Monday for someone new and more resumes coming in... I learned a lot from the process and must always remember that I'm a grown-up and am entitled to have things the way I want them.

We redecorated the house today and I'm up way too late trying to finish the new arrangement. I can never sleep when something half finished.

Good Night!

A thought

2008-10-07T22:00:00.000-05:00

What a different world this would be if people would magnify their blessings the way they do their troubles.

Eat!

2008-10-05T21:12:00.002-05:00

So the new issue for us is to get Dermot to eat all of his food. I can't tell you how stressful it is to feed Dermot these days.

He's sick of the whipped cream, and is only eating about half of his meals some days. I don't really know what to do. I'm calling the doctor tomorrow. He's out of the office because of a family emergency. What about my family emergency!?! I want to give up this diet. It weighs on our thoughts all the time. Although Dermot's well-being weighs on us all the time anyway. It's a constant dark cloud walking around with us...

I sometimes get physically sick from the pain I feel. I run to release my worries, to relax and to forget for a little while. It works. Plus I'm back to my pre-pregnancy weight, so I've got that going for me.

We'll keep plugging along, we have to. It's our 6th wedding aniversary this Sunday, I remember our wedding like it was yesterday. Wow, what a carefree life we lived. As you can tell I'm feeling a little blue tonight, when that happens I always think about when life was easier, normal. Tomorrow's a new day.

I appreciate everyone's interest and support, I'm blessed with good friends and family.

One day at a time.

Powerless

2008-09-28T22:16:00.002-05:00

So I've been waiting to write because I want to have good news, I want to be excited and tell all of you that the diet is working and all of that crap at the hospital was worth it. It's not working. Dermot's seizures are getting more frequent everyday. I can't stand it. I want to get inside his little brain and rewire it some how. I'm not ready to give up the diet yet, There might be some fine tuning to do, we'll see. It was a bad weekend for Dermot. That equals a sad and frustrated mom. I just want the Dermot from last year back. I can't have him. I'm heartbroken.

Stay tuned, I'm calling the doctor's office tomorrow to get some answers and ideas of what to do next. The scary part if the diet doesn't work is the alternative. Another new drug. I hate trying them because I get my hopes up and he changes, depending on the side effects (lethargy, irritability, sleepiness, etc.) The odds that new drugs will work decrease dramatically the more drugs you try. So the theme for this message is: powerless. I have to wait and see. Your thoughts and prayers are needed, I need your strength.

more later...

First day of fall.

2008-09-22T21:42:00.006-05:00

When you don't know what to talk about, try the weather. Gorgeous day today, a strong breeze and sunshine. Our family took our usual after dinner stroll thru the neighborhood, nice.

Joe and I actually went out last Saturday night, I wore make-up and everything! Here's the proof:

We were home by 10:30 though. We attended a benefit concert for a respite center for parents of terminally ill children and parents that have lost a child. See link: Faith's Lodge

It's a sad and scary topic, but we were glad to contribute to it, Soul Asylum played. TOO LOUD!

How's Dermot doing? His seizures have come back a bit. Not as much as before. The doctor warned us that there may be a "honeymoon" period when the seizures disappear, then they return. We're going to work with the dietitian to change the ratio of fat vs. carb/protein to see if that will help. Cross your fingers for us!

We also just hired a part-time nanny today! Hooray! Her name in Rachel and she'll be working with us Mondays, Wednesdays and Fridays. She'll start next week. She's a student at the U of M and has a lot of previous nanny experience. She did admit that she doesn't have any experience with special needs children, but told us she's ready and eager to learn. And teach her we shall. She'll be here for Dermot's OT and PT appointments. I'm so relieved we found someone we like. It will make our lives a ton less stressful.

Owen is doing great at his new class, he talks about all of the new friends he's meeting there, him and two of his friends even got in trouble for writing all over his face with a marker last week. Funny.

Equipment

2008-09-18T09:51:00.009-05:00

I remember the first "equipment" that Dermot's physical therapist brought into our house. It was a clunky purple chair with lots of belts and a harness. It was so Dermot could sit upright "by himself" and play. I cried when it came in. Dermot's condition was real now. He wasn't sitting in the bouncy chair made for babies 10 pounds lighter anymore.

Now, I welcome the "equipment" into our house. Most of it's on loan from the school district. He has a stander to help with his hip development and a tumble form chair (big blue, as my husband calls it) to allow him to sit up comfortably by himself, (he grew out of the purple chair over a year ago) and his new "stroller" that offers him great support while being out in the world. The latest piece I just ordered is a bath chair. It's made out of PVC pipe and a blue mesh fabric. This is the first one we've had to pay for out-of-pocket. $315 for a bath chair.

It got me thinking. What do parents do that can't afford $300 for a bath chair? Or even the $250 co-pay we paid for the stroller that usually costs $3000?
I am a fan of the TV show Extreme Home Makeover. They are always giving new homes to less advantaged people. Most of the families have kids with disabilites and they set them up with thousands of dollars worth of equipment to make their lives with their children just a little bit easier. Stay tuned, I'm going to find a way to help these families too.

I have a nickname "stroller queen" because I have bought and tried so many different brands of strollers I could run a store. I had a reason for my purchases. I was always searching for the perfect stroller for Dermot to be comfortable in and to make my life easier. I wanted to be able to stay mobile with all the kids, I wanted to still look like a "normal" mom with my kids. Well, I have given up my stroller ways, because I discovered that Dermot is happiest riding in his "Equipment", my only regret is that they don't make a double so I can roll Ryan around too. So for the near future, you'll see me walking with Dermot in his stroller and Ryan in the Bjorn. Ryan better learn to walk soon, because he's getting really heavy in his carrier.

Big guy!

2008-09-18T09:51:00.004-05:00

Holy cow, Ryan is 4-1/2 months old and weighs 19.65 lbs. That's bigger than both his brothers at the same age. I think my muscles are in trouble. Ryan's check-up went great. "He's perfect" said the doctor. Whew.

The new diet

2008-09-18T09:51:00.001-05:00

This seems to give a good explanation of Dermot’s new diet.

So far so good, Dermot’s seizures are few and far between now. He has about 3-4 a day instead of 30. Keep praying for him, it’s working! We still can change the ratio of fat/carbs & protein to fine tune the diet…

Link to keto diet

http://brainblogger.com/2008/09/05/when-alternative-isnt-anymore/

Dermot's home.

2008-09-14T21:40:00.000-05:00

Dermot's home! We brought him home this afternoon, he's doing great!

Rice, rice baby!

2008-09-13T22:47:00.002-05:00

Little boy Ryan tried rice cereal for the first time tonight. He gobbled it right up. He opened his mouth for every spoonful and ate the whole serving. My mom swears that it will help him sleep thru the night. I'll keep you posted on that.

Maybe tomorrow

2008-09-13T22:24:00.002-05:00

Well, today was much better. Dermot slept thru the night and woke up looking much better. He was talking a lot today, I got a mat and stretched him out and did some sit-ups. Then the therapy dog Buddy came to visit. He's a little Welsh Corgi. What a nice surprise to have a dog at the hospital, the kids seemed to really enjoy him.

Dermot also played for a while. The ward has a chair just like the blue one we have at home, so Dermot could sit and play. We read some books that our friend Lisa dropped by and we sang for a while too. The doctor wanted to see how his system responds to the Bicitra medication before letting him come home. I'll feel better when I know it's working. So we will most likely bring Dermot home early Sunday afternoon.

I just returned from the grocery store with all the new foods on Dermot's menus: mayonaise, heavy whipping cream, butter, cheese, etc...Weird huh?

We've seen some promising results as far as seizure activity goes, they've been reduced dramatically so far. We're keeping our fingers crossed.

Almost done?

2008-09-11T21:26:00.005-05:00

Yesterday: yuk.

Dermot was suffering from acidosis-too ketotic. He was lacking in CO2 in his blood which made him lethargic, irritable and worst of all, not hungry or thirsty. The doctor said push the fluids and gave him a medication to correct the imbalance. He had a full night's sleep and looked a little better this morning.

After good lab results this morning Dermot had a decent breakfast of applesauce and eggs with cheese, cream and a lot of butter, ummm. He ate all of his lunch too. I think he's getting better, it hasn't helped that he brought Owen's cold with him. The doctor said he may be able to come home tomorrow or Saturday at the very latest.

I thank my many visitors for their company and food, it makes me feel stronger when I have good friends around to support us.

It's an interesting place, the pediatric epilepsy ward, most kids have helmets on and are hooked up to EEG machines. The kids are connected to long cords so they can move around outside of their rooms. They have a play room, a television, a computer and the most popular item is the Wii. The kids range in ages from 4 months to 19 years, girls and boys. They are from Wisconsin, Iowa, North Dakota, and Central America. Some are trying new drugs, some are gearing up for brain surgery and some are being monitored to record seizure activity. All the parents are searching for answers, just like us.

I'll keep you posted...

Progress

2008-09-09T21:20:00.002-05:00

Okay, second day of the Ketogenic diet and Dermot's hospital stay: the first day went good, he fasted for only 20 hours and they determined he was ready to begin eating his new food.

His first meal: about a tablespoon of pureed chicken, a pat of butter, 2 oz. of whipping cream and a 1/3 of a banana. Not much. Of course he ate it all, but was upset when that's all we could give him. The first three meals are about a third of what his regular portions will be, his next three meals will be 2/3 of is full portions, then after that he'll be able to eat his full carolic intake of 1050 calories a day.

Today was harder than yesterday. Dermot woke this morning to a needle in his arm to get blood to check his labs. They discovered that he was becoming dehydrated so they wanted to put in an I.V., I strongly objected, but after a few tears and some heated discussions with the nurse and the dietian I agreed to the I.V. They said it's common for kids to become dehydrated while switching over to the diet because it's such a shock to his system. Bummer. Then the physical therapist showed up and started working with Dermot, but Dermot said NO WAY and wanted some big hugs from mom and dad to settle him down. I was so encouraged by his first day I thought the rest would be smooth sailing, not so. I just have to remember what a shock this is to his body.

Next up, continue monitoring his blood sugar and ketone levels and continue the meals. By Wednesday night he should be able to eat a full size portion for dinner.

Thanks for everyone's well wishes, I REALLY appreciate it!

One day at a time...

The hospital

2008-09-07T21:10:00.003-05:00

Tomorrow's the big day. 5-9 days in the hospital (Children's St. Paul) to start the Ketogenic Diet. Joe and I will take turns spending the night, yipee. I just hope we don't have a loud roommate or any roommate. The first two days Dermot will fast, yuk. While he's busy doing that, Joe and I will get educated by the dietian on how to prepare and feed Dermot his new food. Today I got a head start and gave him whipped cream and scrambled eggs with butter for breakfast. I think I might end up gaining some weight from tasting the whipped cream for every meal. We'll sweeten it with Stevia, a natural sweetener, it works great.

If you're looking for something to do, please feel free to call us on our cell phones, offer to bring us lunch or dinner, or just stop by and visit..it will make the time go by a lot quicker. I have the latest issues of People and Us waiting to be read, plus a few books I haven't been able to finish.

I hope Dermot gets through the first part of this process okay. The book tells me that after we're released it may take a few weeks to fine tune the diet for optimum seizure control. I'm just worried that he won't eat the food because it's so different from what he's eating now.

Let go and Let God.

I'll keep you posted.

Little boy Ryan

2008-09-06T21:41:00.001-05:00

He bounces, first time in the Johnny jump up!

What a cutie...

First day of school

2008-09-04T21:50:00.000-05:00

Owen had his first day of Pre-K today. He'll go Monday thru Thursday mornings.

He was a bit shy when I dropped him off, which is a bit strange for him. But when I picked him up he was all smiles and made a few new friends.

appointments...

2008-09-03T21:49:00.003-05:00

Today Dermot had his MRI and his blood drawn for some genetic tests. He did great, 90 minutes later he woke up shivering from the anesthesia, hungry and happy.

Later that same day, Dermot's new "stroller" arrived.
We've been looking forward to and dreading the arrival of Dermot's new "mobility device". It will allow him to be MUCH more supported while sitting, thus more engaged with his environment. It's a little scary because I'm sure we'll get "the stare" a little more than we do now, but I'm learning to get used to it.

Today was also the last day for Aunt Mary and Aunt Susan to stay with us. Everyone appreciated their visit. They made a few dinners for us and watched the boys more than once. What a helpful and enjoyable visit!

Next week is Dermot will start the ketogenic diet. We'll be admitted to the epilepsy ward at Children's St. Paul on Monday and have been told we'll be there 5-9 days.

Here's a link to more on the Keto Diet

It's going to be a lot of work, but it may mean getting Dermot off some of his seizure meds and be rid of the side effects that come along with them.

More info will come later...

Labor Day Weekend

2008-08-31T21:05:00.000-05:00

Busy Weekend...Owen, Joe, Sue, Katy and Aunt Susan went to the fair again on Saturday, lots of people, wow! Sunday: Went to the pool and celebrated Aunt Katy's 30th birthday! No pictures! I forgot my camera at home...

Vision

2008-08-27T20:53:00.000-05:00

Dermot went to the eye doctor today. She discovered that Dermot has mild cortical vision impairment. See link for more info: http://www.ohiolionseyeresearch.com/cortical_visual_impairment.htm

He got these really cool glasses, Owen was really jealous!

The Fair

2008-08-26T21:39:00.001-05:00

Took the whole family to the State Fair today. Aunt Katy joined us too!

Perfect weather!

#3

2008-08-25T22:23:00.000-05:00

What a joy. Ryan Sullivan is a spitfire. at three and a half months he sleeps thru the night, has rolled over and wants to be a part of everything!

God bless him.

Dermot

2008-08-25T22:05:00.000-05:00

My beautiful Dermot. This summer has been tough for him. His seizure disorder continues and so does our journey with doctors, therapies and drugs. At one time this summer Dermot was on 4 different medications all at once, not surprisingly he turned into a lethargic blob. We said enough, he's now on two medications and is being slowly weaned off one of them, Klonopin. In case you've never heard of it, it's in the barbituate family of drugs, we didn't realize 18 months ago what exactly it was when we agreed to give it to him. Our hope is that he'll continue to be less drowsy, drooly and floopy as we wean him from it.

Dermot has been very busy with appointments this summer. Along with the two weekly physical therapies and occupational therapy, I have taken him to see a chiroprator, an herbalist and a physiatrist. In the coming weeks he will go to the opthamologist, have an MRI and a few blood tests to check for genetic disorders. I started to get more active in his healthcare because I fear something is happening to Dermot. He's not quite what he used to be. He's lost some skills and abilities. It's breaking my heart. We are determined to try new treatments, alternative treatments to make Dermot better. I'm not looking for a miracle cure, but I'd like him to have less seizures. He has around 30 a day.

I feel blessed that wehave a family with such love. We celebrated Dermot's second birthday in July and he was surrounded by many people who love him dearly.

My three sons

2008-08-25T21:57:00.000-05:00

So I haven't written in over a year. I've had another beautiful boy. Ryan is his name. He was born May 2, 2008.

We are just coming up for air, now that everyone finally sleeps thru the night. I think that I will use this site as a way to update friends and family on our life's pleasures and struggles...

Please visit when you can and ask many questions if I'm not explaining things enough.

A new site test

2007-03-21T14:45:00.000-05:00

All together on the couch!