Special Ops

It occurred to me today that I have been doing this parenting gig for 17 years this month.  Not just parenting, but parenting a child with a disability.  "Special needs" parenting.  I'm still not even sure what that means, outside of the concept that basic things are harder than they should be, everything for my kiddo costs more, and we still keep getting up every day to do it again.  We put our pants on the same way as everyone else (albeit some days they're inside out or backward; some days both).

But I remembered an article stating that parents of children with disabilities have stress hormone (cortisol) levels similar to combat soldiers.  Parents of children with autism have discussed the effects of constant vigilance on their psyche, such as one of my favorite blogs, a diary of a mom.  You know that panic feeling you'd get, when your child still had that "new baby smell," you'd see them sleeping and your heart would catch in your throat as you wondered, for that agonizing split-second, if they were still breathing?  My kid has a seizure disorder.  That happens to me. Every. Single. Day. 

As I stared at my sinkful of dirty dishes, I reflected briefly on my 17 years of hardcore-parent training.  We aren't the "enlisted" type of parents.  Hell, we aren't even "drafted."  We aren't quite sure how we got here, but we are the Special Ops parents.  And I'm going to wear that like a badge of honor whether it's an inside-out pants day or not.

We are the parents who you call when something weird happens with your kid.  We are the ones who you call when your child gets a diagnosis.  We know all the medications; we know most of the acronyms.  We are the ones you call when your kid qualifies for services.  We ask how you are doing before we ask what they qualified for.  We know how hard that day is, regardless of how much you wanted the help and validation.

We are the parents who you call when no one else is up to the job.  Whatever it is.  And hopefully, if it's a right-side-out pants day and I've had my caffeine, you'll get the support, love, and excess of information from me that you deserve.  Because we have a code.  No one gets left behind.  We may be terrible at getting out to gatherings, parties, and returning calls.  But when the chips are down, we'll be there for you.  With hugs, caffeine, and an arsenal of anecdotes and resources.  It's almost like we've been trained for this.  

In fact, we call each other.  Those moms in my circles who have had different training have their own specialties.  My BFF is my respiratory system/ADHD/allergy/504 "expert."  I'm the seizures/global developmental delays/nonverbal/genetics/pseudo-autism/IEP"expert."  My other dear friend from way back is the foster care system/preschool/tie-a-knot-in-the-end-of-your-rope and hold on "expert."  And it spreads out from there.  We call each other to ask questions for other people.  We may not know the answer, but "we know a guy."  If we can't find it, we'll find you someone who might know... because we've all been on the search for answers, and we're stronger together. 

Unconditional Love... and Inside Jokes

I was thinking about my life with Katie, the other day, as I often do.... As a mother, I know the unconditional love for a child. It is more intense than I ever imagined. And though Katie's situation is sometimes disheartening, I still know for certain that there is nothing that would make me forsake her.

There is absolutely nothing she could ever say or do that would make me love her less. Of course, I also realize the simple flaw in this statement--the fact that she cannot say anything at all, and her motives are always pure because of her disability. Sure we have our "disagreements", she wants something which she can't articulate and I get pinched and pulverized for my ignorance or noncompliance with her desires. But I suppose in the rebellion-aspect, I have little to worry about from her.

But I do love her so intensely that it scares me. I tend toward anxiety as it is, and the uncertainty of Katie's health and medical issues is an easy instigator for my anxiety-prone mind. I worry about her future, her health, the random grand mal seizures which scare the life out of me and make her appear nearly gone to this world for several minutes. I fear that I will somehow fail her, and an accident will occur that I will be unable to forgive myself for. I can't leave her alone for more than a minute as she is nimble enough when she wants to be, and her seizures rob her of her balance.

Most of the time, though, I can bask in her simple joys. We have what I like to call "inside jokes." She will look at me, and I will catch the twinkle in her eye, and we both break out laughing. Eye contact has always been difficult for Katie, for reasons I cannot explain to my own satisfaction. Possibly cortical visual impairment, though I couldn't get this looked into by the "professionals" at her school. They felt her vision was good enough and if CVI was a factor, it was nearly resolved. That's cool. Don't listen to the person who spends all of her waking time with Katie. Rely on your 30 minute "assessment." **meh** But I digress.

The way she looks into my eyes and the giggle fits we get into.... that is the closest to pure joy I have ever been in my life. It literally takes my breath away. Those big blue eyes, that mischievious look..... Nothin' better. So I realize I have it easy when I think hard about it. Katie will not disown me, nor I her. There won't be battles over clothing or slamming doors and hateful words.... But it is a bittersweet victory as there won't be "I love you, Mom" or "Thank you for helping me. You always know how to make me feel better." I just have to see that gleam in her eye and know that she means it.