Tuesday, October 27, 2015

Fall update

Since the drama in August, Avery has had quite the eventful two months.  The roller coaster analogy that her doctors gave us at her birth was the most accurate description of our life that anyone could've given us.  I've said it before, but "resilient" just begins to describe our little girl and how she handles this roller coaster.  And while I've recently hesitated to call her my "inspiration" (after learning from some older kids and adults that not every differently-abled person appreciates that compliment), I still say that she reminds me daily to look at each situation differently, and to be present.

I haven't been posting my usual frequency of updates, and I appreciate the concern and notes from those who follow her regularly.  Basically, I am not sure what to say, or I don't feel particularly positive, so I don't say a whole lot.  The bumps in the road have come one after another and it's too difficult to keep up with in my own head, let alone describe it to friends and family.  If the shoe were on the other foot, and someone was trying to describe to me what goes on inside Avery's body, I would probably glaze over after the first few sentences.  It's not an easy set of circumstances to explain.  She's been described in the past as "medically complex," and I suppose that's the simplest way to sum it up.  People wonder why her eye issues continue, don't "get better," and why other things pop up every other week.  And though I shouldn't care, I do start to worry that people question our judgement - with regard to our choice in doctors and/or her care overall.  I wouldn't be surprised if some people thought we made some of this stuff up!  Trust me, I agree that much of it sounds made up.  I wish I was.  Not many people deal with continual health issues, surgery after surgery, with really no improvement and no end in sight, so I can see how it seems strange and often, unbelievable.  There are few people in our inner circle who hear every last detail, and therefore "get it."  Every single thing about Avery's case is rare and complicated.  At this point, there is no benefit from second opinions or new doctors.  Each time something comes up, we exhaust every possible option and explore every possible solution.  We know this girl and her symptoms like the back of our hands.  She has a wonderful disposition and a big smile, but inside, she's complicated and things are going wrong on a regular basis.  This is why I may seem like a helicopter mom; it's because most of the time, I have to be.  If anyone else walked in my shoes, they would be too.

I've talked before about my close group of friends who are mothers of children who share Avery's diagnoses.  They do walk in my shoes every day, and lately, we are all dealing with a lot with our kids.  We are all asking one simple question that no one can answer: "Why?"  And even though none of us can find the answer, we can be a shoulder to lean on, and send a virtual hug.  Often, we are helping each other brainstorm problems, and backing up each other's gut instincts.  I can't stress enough how vital it is to have this type of support system if you're a parent of a special needs child.  Whether it be autism, cancer, chronic illness, different abilities...anything...I can't say enough about having a friend or group of friends in your shoes.  To go at it alone is not recommended.  I've leaned on these moms on every difficult day, as well as on the good days.  So, a quick "thank you" to them - I love each of you so much.

That "why" word has been in my daily vocabulary for five years, but it's made a more regular appearance again lately.  Avery's right eye just doesn't seem to want to cooperate.  We've just learned some devastating news about the right eye.  It's a long story, but basically, we are reaching the end of the road in terms of options, and at this point, our priority is trying to preserve the health of the eye, rather than wondering if it will ever regain vision.  That's a scary statement.  On top of that, she's acquired some additional health issues, related to her immune and adrenal system.  This makes everything that much more complicated.  The poor kid has been poked and prodded more than usual lately, on top of starting Kindergarten in a brand-new school.  But as everyone knows, she handles it.  She isn't down for long and bounces back with that Avery smile.  I hate that she has to, and doesn't even realize that what she goes through isn't typical.  That her life is interrupted on a daily basis for medication, doctor appointments and obstacles.  I still look at Lucy and am in awe of how easy it is for her.  It's heartbreaking, and even though I have to stay positive and strong for both of them, I feel it whittling away at me every day.  Especially today.  It's been a tough few months and we are exhausted.  We just got the weekend "off" (thanks, mom and dad!) and it was literally the most wonderfully-relaxing 36 hours we've had in a loooooong time.  But the next day, we hit the ground running with this
eye problem.   And that will be our story from now until the end - as John reminds me daily, we just have to keep moving forward.  To end on a totally positive note - Avery is rocking Kindergarten.  We were off to a very rocky start with school, but it's done a 180 and because of that, she's doing so well and has another great team to support her there.  She's already mastered the beginning of the Braille alphabet - much faster than her mom and dad, I might add!
As always, we are grateful for the support of our parents, family and friends - we welcome your continued prayers and good vibes!!