I'm usually pretty okay when it comes to our life and situation with Avery's health issues. I've reached a point of acceptance, and my skin has thickened to the world around me. It usually takes a series of blows to that ego - a few days of bad news, coupled by a half-dozen doctors appointments, or being on the tails of a hospital stay - to bring me down a few notches. One day, I feel like I've got it all together as a special needs parent. I'm giving advice, left and right to new moms of special needs kids, I'm signing up to volunteer for various events related to Avery's disorders, and I'm on top of every item on our "Avery Checklist" (IEP goals, doctors appointments, google-searching new ways to help her). The next day, my seemingly tough foundation begins to crack as I start to hear more and more bad news, and before I realize it, I'm thinking, "if one more person stares at my kid walking with her cane, I'll start crying right here, in the parking lot of the doctor's office." (Not that this has ever happened....)
The start of 2015 has been pretty rocky, and it's been especially difficult to deal with being that we came off of such a happy, healthy 2014. Avery's first seizure one month ago, and the fact that we could have lost her from the effects to her body, was enough to shake us up for awhile, and it left us with an opened can of worms. There's a whole new set of specialists to see, tests to do and so many more questions to ask. If dragging your child through those things isn't enough, there's also the issue of making sure your insurance will cover it, and kicking yourself for not increasing the amount in our Flex Spending account. I say it every time we're in a busy spike - this is a full-time job. Recently, I decided to go back to work, mostly since things with Avery had been so stable. I took on a part-time job recently, and for the most part, it has been a really positive thing, but is now also an added stress amidst all of the extra stuff going on. Not to mention John and I are trying to learn Braille - one of the hardest things we've ever tried to learn. This is going to be how our life goes; never knowing when Avery's issues will pop up, so living our lives can't be put on hold forever, even though it's difficult to juggle everything.
This week has just sucked - no other way to put it. We continued our tour of new specialists - the Neurologist and Endocrinologist were scheduled, as well as her normal weekly speech appointment. I also started working 2 days (rather than every night), so my parents started helping out two days a week. Yesterday, the Neurologist reviewed the EEG results with us, further explaining that Avery has seizure activity, which is why she's now on seizure meds, as well as a general slow-moving brain activity. We know she is developmentally delayed, and this is the cause of it, but it's hard to hear. She rattled off a bunch of "next steps," and I guess I wasn't prepared for them. She suggests Avery do a longer EEG test to gauge the frequency of her seizure activity, as well as see a Doctor of Behavioral Medicine/Psychotherapist, who can evaluate any social/emotional issues going on, and help us with Avery's development. In this discussion, the Neurologist asked us if Avery's been tested for Autism. The thought has run through my mind many times, and I've brought it up to every other specialist she sees, and even though none of them think she is Autistic, the worry still lingers. So to have a new doctor bring it up was a kick to my stomach. It put it right back on my radar, and I was hoping it was one of my crazy fears that stays in the back of my mind. She wasn't saying Avery is Autistic, but the very mention of testing for another diagnosis makes me sick. I left that appointment feeling very defeated, which I haven't felt in a long time. We've dealt with the devastation of not only life-threatening issues, but the fact that our child struggles on a daily basis to do very basic life functions. Every possible effect of her health that has once been just a topic of discussion, has seemed to come true eventually. Once upon a time, things like shunts, revisions, and seizures were just talked about as possibilities. Then, one by one, all of those things have invaded our world. So, forgive me if it's hard to believe that yet another diagnosis won't rear its ugly head.
If that wasn't enough for yesterday, John also found something in Avery's eye while putting her drops in. It appeared to be blood near the valve that controls the fluid in her eye. I took her in first thing to have it checked, and her ophthalmologist decided he needs to do an EUA tomorrow morning to get a better look. When it rains, it pours. It can never just be one issue at a time, unfortunately. We always hope it's nothing serious, but the very stress of handling it is hard in itself.
This blog is here so I can vent my worries and frustrations and remain a strong, steady rock for my daughter. I can let myself break down when John is here to take over for me, but at Avery's age, there's no crumbling in front of her allowed. I did start to tear up yesterday after the fifth person that day stared at Avery walking along with her cane. Even if it's a look of sympathy, I don't want her to be on the receiving end of that kind of attention. But, like always, we will keep moving forward, take it a day at a time, and deal with what we are given. No part of this life is easy, but we have the most beautiful, wonderful daughter in the world relying on us to help her through it, and I will continue to make that my number one priority.
