This red coat

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...

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.

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.

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

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.

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

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

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

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

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

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.

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

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.

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

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?

"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

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

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

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

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.