Friday, August 10, 2012

Atypically Speaking

"Human beings are perhaps never more frightening than when they are convinced beyond doubt that they are right."  ~Laurens van der Post

My dreaded seasonal misery has not overlooked the coziness of my soul couch. Yep, the entire season of summer seems to be my tightrope teetering time, spent stuck above any glimpse of my sanity that I can catch. Will I someday look back and think, ah those were the days?


Don’t get me wrong, there is always much fun to be had…this year it’s been laced with specialist follow-ups, diagnostic procedures, labs, event & holter monitors, dreadful heat & droughts, devastating fires, major therapy changes…did I mention it’s been miserably hot? Oh August how you make me drool.

I think I’m also getting comfortable with our new CDKL5 pal. Honestly, it’s been a bit of a memory nudging experience to find a support group with so many beauties like Ava under the age of 4. Not that Ava turning 7 this fall is considered the senior ranks by any means BUT I sure had conveniently forgotten many places we have stood.

Likewise, I’m getting friendly with some of the things that might lie ahead. Nothing binds a group of complete global strangers together quite like the disdain of a mutual adversary. We’d shake a solution out of any current American political debate in no time. Adversity and desperation tends to bring out the critical thinking side of humans. Also dispels any desire to embrace pity, loathing, blame, and things of the like.

Obviously my fellow countrymen would rather throw rhetoric around like a small town class of junior high students in lieu of acting like they live in a democratic society, with free education…my apologies to those around the world that fight for free literacy. Witnessing this hot mess must boil your blood.

Anyhow, I have been able to drop most of my guilt bounded by not knowing what was up with Ava. You will never understand what it feels like to pass on genes (and let’s be real, no matter who carries the fluke or if it’s sporadic, it is a combination of both parents DNA that is brewed up) to a child that compromises their health so, until you’ve beaten that path. Sounds silly but it lingers, as a common thread no matter what the diagnosis. I can also start to forgive myself for any doubts I’ve held regarding the fashion I’ve dealt with the assholes, many whom challenged my level of “acceptance” or the concerns I held for Ava’s health (no Munchausen here), and questioning decisions I’ve made for my family.

That’s right, Fu*k you judgmental bastards! I’ve done the best that I could (kicked a bit of booty even), dealing with the hand I was dealt. It feels damn good to have confirmation of that notion and be able to end the constant search for answers. It’s extremely rejuvenating to have an answer, the flip side is the diagnosis isn’t pretty but I figured as much.

A quote from The Rett Syndrome Handbook sent to me from CHC that speaks to some of my experience wandering in the special needs world; “Parents of children with Classical RS (I will insert any dx viewed more severe or limiting) may envy the atypical child’s accomplishments and unwittingly minimize the family’s grief or ignore them because their children are higher functioning and they consider these families fortunate. It is important to remember that pain is not a competitive sport. Children with Atypical Rett Syndrome present their own challenges. Many girls are hyperactive and require constant monitoring to keep them safe. Teachers and therapists often do not have enough information about Atypical RS and throw up their arms in frustration about what kind of programming they need.” There you go, I am a constant monitor over the summer and I'm not always fond of that reality.

Health wise we’ve ruled out congenital heart defects but have orders to contact the cardiologist with any changes in her health. Her arrhythmia certainly isn’t normal but also not anything textbook or explainable. We have a sleep study this fall, pulmonology and immunology are some of the last puzzle pieces to try and explain the issues she is having…which I figure the highest possibly is the link back to neurology at this time.

I’ve wonderful things to post soon, in regards to hippo therapy for Ava and therapeutic riding for Aliza. Enjoy your summer wind down.

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