"Welcome to the club that nobody really wants to belong to." Those were some of the first replies back I got when I joined a few online support groups for families impacted by Autism, and then later, when I joined groups online connecting those of us impacted by systemic mastocytosis. I remember laughing it off a bit, and trying to roll with the punches... but in those first few months when you KNOW something is WRONG with your baby, your first baby, and thereby, the love of your life.... rolling out of bed was hard enough, and I could barely stomach rolling with the punches.
Realizing I was part of this dreaded club... the "crazed mother of a sick and disabled child club" initially made me want to vomit. And even though I knew better, I still went through the same grief pattern as everyone else, including denial, bargaining, anger, sadness and so on. I have written before about what "acceptance" really means to me, and how that applies to our circumstances as they are today, but one thing I don't think people truly "Get" is that within this roller coaster ride, the grief keeps coming as the depth of your child's disability continues to reveal itself over time. For example, Even though it has almost been two years since I realized Avery diagnosis, I never imagined that today she would still be unable to master skills she easily performed as a 9 to 12 month old. I never dreamed she would still be non-verbal, and no where near being able to be toilet trained, and unable to jump, coordinate stairs and even curbs with ease and so on. So even though I "knew then" there were still so many unknowns as there still are today.
One of these "downer" realizations occured to me last week when I was able to see that she really can't hack it in a typical preschool anymore... even with a full time shadow. Well, that's not fair, she can hack it, but she is turning more inward as the kids become more different from her. So, again, I was pretty overwhelmed with sadness because my sweet baby girl can't go to the preschool I wanted her at.... the one I picked out long before she was even born as I was working as a developmental therapist in the field. It was just one more blow. But don't get me wrong... I know that in the big picture that this is just one little bump in the road, but trust me, I agonize about the big things too. The realization that we will likely have to help Avery for our whole lives. I won't even go into the stress I feel when I consider her life without me and Bryan. Another big one is when I ponder that, given the nature and complexity of Autism, Avery may never know empathy, or compassion, or how her sweet disposition and even how her disablity itself has forever changed me for the better. I want so badly for her to know and understand the immense and forever love that Bryan and I have for her. So we will just keep trying to show her.
My point is... I thought by now this would be easier. That we would have the hang of having a child with very special needs. Unfortunately, it doesn't seem like we ever will. But I will tell you this, we are better than we were. We are becoming experts in treatment options, latest research, medical breakthroughs and begging God for some relief. We can be open and honest about Avery's deficits and about her angelic presence in our hearts and souls. We can share our story, and listen to others as they walk their own journey. And we can love her. We can love her with every ounce of our beings and know that within that love, she will feel whole.