I got a lot of emotions off my chest. I talked about some of the hard things about being a parent of a child with special needs. I wrote about the mind numbing paperwork that I keep busy filling out every year right around Ella's birthday. A time when I'm trying to focus on the blessing of another year and all the accomplishments we've made, is also the time every single program/service/therapy she is eligible for requires updated and reverified with such pertinent information such as "How do I know the person" and "When did I first meet them?" (I hope conception was an appropriate answer..) And in addition the ridiculous busy work of writing down every single doctor Ella visits, their name, address and telephone number, every single appointment she's had in the last year, what the appointment was for, what tests were run, and what type of care was provided/medications prescribed. Every. single. one. Also, every single therapist she sees, how often, how long, and what specific things they are working on. (Oh, and also the names, phone numbers and addresses of those.) But the worst are the ones that require me to verify that she is still 'disabled', you know, that she hasn't been 'cured' of having CdLS or something.. those are really hard for me. I'm a pretty optimistic person and I try to look on the positive side of things more times than not. However, when filling out these forms it becomes painfully obvious that that one time we were all so excited about Ella scooping up one spoonful of peas, is very different than answering 'yes' or 'no' to "Does she independently feed herself?" Well.. no. Not really. And 'working on unzipping her pajamas zipper' is a far different cry from "Can she dress herself?" Not at all. Or that once she sat on the potty? Much much different from "Is she potty trained?" Not even close.. And knowing about 30 signs and having a handful of understandable words is great.. until you compare it to "Does she speak 2-3 word sentences?" Ummm... noooo. These forms just seemed to magnify all the things Ella is NOT doing instead of my usual mantra of "Focus of what she is doing." It just got to be depressing. Instead of celebrating her life and all the amazing things she's accomplished in the past 4 years I was forced to sit down and highlight her disabilities. Not cool..
I also wrote about the feelings of despair when your child is trying desperately to communicate something with you but can't find the words to express herself. And the heartache of watching anxiety creep back into her life in uncertain situations, just when I thought we had come so far to overcome it. It doesn't really bother me too much when I see kids her age (or younger) doing things she can't. It's okay. She's happy. She's content. She enjoys her life. That's what's important. But to see her so hindered by this invisible force of anxiety that is very real to her, and to see her happiness compromised because of it, to watch her physically not be able to participate in something she loves because of it, to not be able to talk her through it or basically do anything at all.. is heartbreaking.
I don't have a problem writing about some of the hard things about being a parent to a child with special needs. I want this blog to be about real life and real struggles and they are for sure there. Having a child with a rare genetic syndrome can be very very hard and I don't want to sugarcoat it in an effort to advocate for my child. But after I hit the 'publish' button last week I remembered something. Something pretty important.
A few weeks ago I attended a training workshop at our ESU to help our therapists/service coordinators learn a new way of writing IFSPs. Basically you sat down with a team of interviewers and went through your day from the minute you woke up in the morning to the minute your head hit the pillow at night (or in our case 'the minute you passed out from exhaustion on the couch after the kids were all in bed'). It is supposed to help target key areas in your daily routine that can become part of your family's goals to improve your quality of life. After the
"If you could change anything about your life, what would it be?"
I thought for a few minutes. I contemplated. A few things popped into my head. But in the end do you know what my answer was?
Nothing. I wouldn't change a thing about my life right now. It's crazy. It's messy. It's perfect. It's mine.
Yes, having a child with special needs can be hard. Some days can be incredibly challenging-physically, mentally, emotionally. But when it really comes down to it, I wouldn't change a thing. And that's what was missing from that post I wrote and why I felt so uneasy about it that I deleted it. It's okay to struggle. It's okay to admit that it's hard. It's okay to feel like you're failing. Because at the end of the day I know in my heart that, hard as it can be, I wouldn't change a thing about any of it.