Hard to Swallow
Yesterday went better than I would have ever expected. Ash was almost pleasant while she was having the stander fitted to her. She only cried a small amount and then settled right into it. She played a while and seemed to enjoy her new perspective of the world. Then the hard to swallow part comes up. The moment that I stand outside of our world and peek into what is actually going on. This is our little girl being strapped into this device. She can't stand up on her own and she certainly doesn't walk. As proud as I am of each and every accomplishment that comes her way the fact remains that Ash is not normal and doesn't do the normal almost 3 year old things. Hard to swallow? Every once in a while. Painful realization? One that sneaks up on me every so often when I least expect to feels its sting. I didn't expect it yesterday and yet there it was.
After we fit the stander to her our therapist mentioned to the equipment company representative that we would be needing to measure Ashley Kate for a wheel chair pretty soon. Sting. Instant tears that I was struggling to hide and hold back. A wheel chair? It seems, I don't know what it seems, it just doesn't seem to be what I expected to hear. There is nothing wrong with a chair its just that the pain that I felt pierce my heart at that moment came out of no where. No where! I sat her in a chair and watched as she was measured for seat depth, leg lengths, etc. I still tell myself that Ash is fine. She is going to be just fine. There is no disability here. Not with my child. Thats what I tell myself deep down inside. I don't know why? Its just admitting that there is a problem is like admitting to myself that my dreams for her to be normal some day have died, and that hurts. By the end of the measuring and the discussion it was decided that a wheel chair is not we needed to order. Ashley will learn to walk long before she would ever learn to propel her chair. We were discussing a chair because of her size and her age not because our therapist thinks she won't have the ability to walk, but because transporting her is becoming more and more difficult. We decided on a stroller. Not a normal stroller, but one that is custom fit to her measurements and her needs. It was almost ironic to be measuring her for it because just this weekend several of our friends asked us what we were going to do because Ash had almost outgrown her stroller(it happens to be the biggest you can buy in the stores). Ironic? not really. Just a God who knows what we need and when we need it.
After therapy I went to have lunch with Dave and we discussed why this topic was so hard to swallow for us. Its not just me, its us. It hurts all of us to know that Ashley Kate is not walking. Dave, Trish, Blake, Allie, all of us. Every where we go, every doctors appointment, every everywhere we find ourselves being asked, "Is she walking yet?" It stings. I know its our reality, but its still that part of it that is hard to swallow. I think Dave said it best when I asked him if he was ready to have her in a wheelchair. After shaking his head no he replied, " It almost feels like we would be giving up or admitting that she won't walk. I'm not ready for that."
I'm going to do my best to explain. When looking at Ashley Kate, if you didn't know her story, you might not realize that anything is different about her. I know her face is puffy and her eyes are a little crooked but outside of that when we are in public people don't know there is anything that different about our Ashley. She just looks like a toddler on my hip or on her daddy's lap. People approach our 2 year old and speak to her expecting her to speak back because they don't know she's different. The emotional explanation that would come each weekend as we pushed her through the ball park would be hard to swallow. NOTHING is wrong with the wheelchair, but the emotions it would cause at this time for Blake and Allie who so desperately want their friends to see Ash as "OK" or "normal" would be too much. The emotions it brings up, the thought of failing, it causes in her Daddy and I seem to be too great for us right now. Its just hard to swallow.
I knew this day would come. I know it may still become Ashley Kate's reality, but my hope, my hearts desire, my dream for my daughter is that she will someday stand and walk on her own. It didn't happen for her at 1. It didn't happen for her at 2. It may not happen at 3, but I still hold on to the knowledge that there is no medical or physical explanation for why she can't. By all accounts she SHOULD walk someday.
So for today it is a stroller and not a chair. I'm not sure what it will be tomorrow.
Ash has been in her stander for about 4 hours so far. NOT all at once, but combined since it arrived yesterday morning. She goes from her standing frame over to the gait trainer and in just this short amount of time you can see what a difference is being made. She is moving all around the floor in the gait trainer. She only goes backwards, but the biggest change I see since yesterday is that once Ashley backs herself into a corner she starts to bounce up and down on her legs. Then when she is frustrated with not getting any where with her bouncing she STANDS up! On her own feet, using her own legs, lifts her bottom off of the seat of the gait trainer and tries to move it. This is bigger than HUGE! Its amazing!
She is tired from all of her hard work. She is taking long, restful naps after each session in her stander. She is not able to sit when she gets tired. There is a little padded seat, but the position of her straps don't allow her to sit down. She watches an episode of Blue and then starts wear out. I imagine she will only get stronger and be able to stand for longer and longer periods of time. She is proud of herself. You can see it in her eyes. She applauds her own efforts and it makes my heart smile to see her sense of accomplishment. We are excited for her. Perhaps Blake will be right. He predicts a couple of months of this therapy and then she will be standing. I hope he's right.