Monday, May 4, 2009

My Boy...

So... today my son and I leave to the big city...almost six hundred miles away... so he can get a "brain scan" as Kaisa calls it. Since Alaska has only one pediatric neurologist, we had to wait for an appointment. It's tomorrow morning. Finally. Its bittersweet. I want to know...but do I want to know?

koy 1

Its funny how these things work up in the north. When I lived in Orlando, you made a same-day appointment for emergent, but not emergency things, or made appointments for regular check ups with the same doctor your parent's had and sometimes, your grandparents. Not so, up in the North Country.

We have to be "referred" to any specialist, anything a family doctor can't handle goes to a specialist. Specialists are in Anchorage or beyond. You can't just hop a plane to Anchorage, and make your own appointment...noOOOooo. You have to have a doctor refer you and then travel. That goes for doctors, dentists, etc.


For years, and I mean YEARS, my son has experienced debilitating migraines, where he cried, but hurt to cry, light sensitivity, nausea, aura's, the whole ten yards. I've brought him to the doctors here for as long as I can remember. They've used him as a guinea pig with a plethora of medications. Some that made him tired. Some that made him cranky, some made him crazy. "Side effects include - hallucinations, may experience aura's."

I've asked to have a specialist see him, I've asked to be referred to another doctor, one who may know more about kids brains...but of course, the doctors know more than you do, even though you know the sounds of his cries, you can tell if he's sick, or tired, or hurt. You know the sound of his can tell what kind of day he'll have just by looking into his dark brown, serious eyes. No, you don't know much about your kid...they have to know more than you do. Or so they say.

koy ducks

So, today, we will be making the 600 mile journey on a 747 to an actual neurologist. I hope they tell me not to worry, I hope they tell me he'll grow out of them. I hope they tell me everything's fine...but its hard not to worry. This is the kid who never cried. This is the kid who had a 106 temperature and when asked how he was feeling, he simply replied, "fine." Same kid that cut his lip at age two, walked up to me and said, "mommy, I cut my yip, yook..." and blood splattered everywhere. Six stitches, still no tears. Only a two inch scar.

This is the kid who incubated, survived awful surroundings, and just plain surviving with me for twelve years! This is my son, the person who forced me to grow up, forced me to leave a bad situation and think of someone else. This is my child who allowed, no taught, me to live and love. This is the oldest child, who takes the blame and responsibility for his sister and step-siblings, whenever. He protects them, and takes care of them. He fights with them, but you'd be damned if you ever thought about fighting with them yourself, you'd have to answer to him. This is the kid who cried uncontrollably at his sister's story and bravery, telling everyone that SHE (at age five) is his hero. This is the kid I talked to sleep for days after we all heard "her story."


I want to yell at him and tell him he's late. I want to ground him for talking to a girl at 2:00 a.m. I want to stop him and his brother and sister's from fighting over who get's to play the Wii. I want his energy to continue, I want him to stop missing school because of his headaches. (eighteen days this year) I want him to get good grades, and not miss Algebra tests. I want him to travel to the Villages with his basketball/wrestling/NYO team, instead of sitting in a drunken stupor in the hospital, talking nonsense, thanks to the medical cocktails they pump into him. I want him to fly our airplane.

koy and sis on plane

I'll take his migraines. I'll take whatever's ailing him. Just let him be OK.


Anonymous said...

What a great kid! Our prayers will be with him, you and the doctors.

Anonymous said...

I love reading your blog.
Prayers and positive thoughts to your son.

Is your daughters "story" somewhere on this blog?

Have great day and you have a great family~


Michele S said...

What a beautiful post. Good luck with the neurologist. I would think they would order an MRI right away. That would be the normal protocol. I sure hope you get some answers. I'll be sending good thoughts your way!

Trish said...

That is beautiful!

I'll be praying today.

Sarah said...

I was deeply touched by your blog and by your love for your son. I have a heart for people with chronic pain, especially kids.

You will be in my prayers as you seek the answers you need.

Anonymous said...