Tag Archives: headaches

Big Macs and Big Thoughts on “Special” Needs

Those of you who have followed me through the past year know I have a child who had brain surgery for a Chiari malformation.  This child of mine is one of the sweetest, most social and talkative people you will ever meet.  He is bright and articulate, yet there are times that he doesn’t seem to “get” what is obvious to most of us.  He’s been that way all his life.  I wonder at times if any of that is due to the Chiari.  We have some evidence that it did, in fact, affect his development, but we’ll never know how much.

We took the kids to McDonalds the other night and this child of mine struck up a conversation with a lady who was there trying to get some work done on her computer while her children were on the playscape.  She tried so hard to be patient and enthusiastic, but I could tell he was starting to wear on her.  I was so tempted to quietly tell her that this son of mine had brain surgery or had special needs, anything to get her to be gentle and patient with him.  But I wouldn’t do it, because I knew that that would have been more damaging to him than if she dismissed him impatiently.  I’m not even sure he would fall into the special needs category, probably not.

I’m the first one to tell you that it’s a parent’s responsibility to make sure that their children are getting their needs met and not putting an undue burden on anybody else.  So following that line of thinking, I should have redirected this son of mine, and after a few minutes, I actually did.  But I had another thought too.  And that was that I shouldn’t have to explain to anyone what might be behind my son’s unusual behavior.  He’s a little boy with a heart as big as Texas who was created by God, and he needs, just like any other child, to be loved, listened to, and treated with respect and grace.  And that’s true of every other child, every other person, no matter their diagnosis, behavior, appearance – well, you fill in the blank.

I think I’m starting to “get” it.  Maybe this sweet son of mine isn’t the only one who misses the obvious at times.

By the way, we realized yesterday that Andres hasn’t had a nosebleed since a few weeks after the decompression surgery, and we’re coming up on the one-year anniversary of the surgery next month.  (The neurosurgeon said it takes a couple months for the brain to readjust to the changes in position post-surgery.)

DON”T TELL ME those  nose bleeds weren’t related to that Chiari and elevated intracranial pressure – I KNOW better!!!!!  And the headaches that were only given a 30% chance of resolving?  Gone, gone, gone!   It’s so nice being on the good side of statistics for a change!

Update – Andres (Chiari 1 Malformation)

Well, here we are not even three months out from Andres’ Chiari 1 malformation decompression surgery.

“How are his headaches?” you ask.

“Andres, how are your headaches?”

“What headaches?”

Gone.  Completely gone.

The neurosurgeon shook his head and reminded us the week before surgery that because Andres didn’t have the typical Chiari back-of-the-head headaches, there was only a 30% chance they would go away after surgery.

Gone.  Completely gone.

Andres is running, jumping, playing, riding his bike, getting out of breath, and not needing to come inside and lie down.  The little boy with the grimmace is gone.

It’s amazing what a few months (and a great surgeon) can do.