Monday, December 12, 2011

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.

Wednesday, October 12, 2011

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.




Friday, September 30, 2011

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...

Thursday, July 21, 2011

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
 
  
 




Monday, June 13, 2011

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...

Saturday, May 21, 2011

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.

Monday, May 2, 2011

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.

Monday, March 14, 2011

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.


Sunday, February 27, 2011

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.

Thursday, February 10, 2011

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.

Monday, January 24, 2011

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.

Thursday, January 20, 2011

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/