polymicrogyria

The Miracle of Bacon (and Zantac and Good Therapists)

Dear M,

Now that the holiday season is upon us, let me share with you a little story about the miracles thus far in our lives.

Once upon a time, I was the perfect mother.  I exclusively breast-fed fed my children until they self-weaned, then fed them only the most nutritious, organic, homemade foods around the dinner table.  No sugar or processed food or saturated fats for my little ones!  I refused to expose them to electronic media before the age of two, and taught them baby sign language so they would never feel the frustration of being unable to communicate.  

The fact that I had not gotten pregnant yet was irrelevant.  After five years of infertility, I just KNEW that if we were ever blessed with a child, I would do everything in my power to be the perfect mother to my perfect angel.

The best laid plans, and all that shit…

Keep reading

John

During a meeting at John’s school - or maybe it was occupational therapy or a doctor appointment - someone mentioned the unique challenges of parenting a “special needs” child.  I looked around the room to see if she was talking to someone else.  Then I realized she meant John.  I’ve thought a lot about those words - special needs - as we continue to see doctors and therapists and research and try to figure out what we’re doing with this new version of “normal.”

John is the same child with the same quirks; the only difference is he has an official diagnosis to explain some of his challenges.  But no one has ever heard of his disorder - including some doctors - so labeling it is meaningless in the real world.  Even in the Google-verse, there isn’t much information available.

I feel Marty and I are kinder, more patient parents.  John isn’t necessarily being uncooperative or difficult; there may be deficits preventing him from meeting our expectations.  Yet, we can’t let him off the hook entirely; it’s easy to say “Oh, he’s misbehaving because he has issues,” but that excuse does no one any favors.  Where I may have snapped at John because it was taking him too long to complete what I considered simple tasks, I now know he may require extra coaching and encouragement.  Even then, he may not accomplish his objective independently.

Everything - absolutely everything - is a struggle for John.  His lack of focus makes getting dressed in the morning a monumental task.  He understands what he needs to do, but there’s a disconnect between knowing it and actually doing it.  Before, I would get frustrated and annoyed.  Was he too caught up in his imagination - too busy telling stories to himself - to concentrate?  I force myself to slow down, talk him through each step (multiple times) and allow his mind to get to where it needs to be in whatever circuitous route it takes.

I am not strong or a great mom or anything special at all, and while I know people are being kind when they say things like that, it makes me uncomfortable; I think any parent in similar circumstances would educate themselves so they could better advocate for their child.  Seriously, what else can you do?  I have brief moments of anger at the injustice of it all - John went through so much crap during his first months of life and now this?  Can’t the kid catch a break?  Ever?

And it’s incredibly difficult because there is nothing we can do.  We just deal.  We continue with his occupational therapy, and we work with his school to provide necessary accommodations to help him be successful, but that’s really it.

I get so depressed and exhausted thinking about how hard all of us have to work every single day.  After the challenge of getting John ready for the day, we go to school.  I walk him to his locker, talk him through putting his things away, redirect him when he starts to wander down the hall, squat down, touch his face, and remind him to “Focus, John.  Listen to Mommy.  What do we do next?"  After school, I stand in the front foyer, craning my neck to see him as he walks down the hall with his class, hoping I don’t miss him, that he sees me, that he doesn’t slip by and start walking away from school like he did as a kindergartner.  Then I look in his backpack to make sure he has his folders, then we go back to his locker for his jacket.  Then we go home and try to do his homework before it gets too late in the day and whatever focus he had is gone.

It could be so much worse.  As the pediatric neurologist explained the anatomy of the brain and the functions of each lobe, we realized John’s malformation is in the "best” possible spot.  She said John’s “left high frontal polymicrogyric area…very well may be clinically silent."  So unlike some with the disorder, he can breathe and swallow and move.  He doesn’t suffer from constant seizures.  But there is something different in his brain, something that differentiates him from his neurotypical peers, and no one can tell us what that means for him in the short-term or in the future.  I get the impression it is what it is, and we continue and do what we can to ease his way.

I want there to be an answer.  A surgery.  A miracle drug.  A treatment to "cure” him.  When he was critically ill as an infant, there were “antibiotics of last resort” and surgeries and follow ups.  Then we were done with that part.  It was over.  This won’t be over.  We could get a third opinion; we could travel to Seattle Children’s Hospital - the epicenter of all things polymicrogyria - but we won’t learn anything new.  I know enough about the disorder to know they will tell us exactly what we’ve already been told.

So we keep going, trying to get John through first grade.  At least two mornings a week, I start to cry as I walk out of school.  I get back to my car and call Marty at work, tell him we need to homeschool or do something because John won’t survive in a traditional school environment.  Marty talks me down, reminds me John is incredible - that has not changed.