The Importance of Hope

While speaking with my friend Michael about coping with having a permanently disabled child (he has an adult daughter with Down Syndrome who is fairly high functioning but still needs a lot of support), he mentioned the importance of parents having hope and dreams for their children. He spoke of the grief process parents go through that have disabled (I hate this word by the way- perhaps I should use "exceptional" like a magazine I read uses) children. When you are pregnant, you have all of these hopes and dreams of what being a parent will be like and what that child will be like. When you have an exceptional child, you grieve the loss of those dreams. It has been a process for me that I am happy to say I am starting to cope better with. I feel as though there was such a loss but then such a gain. A loss of what I had hoped for but such a gain of recognizing how wonderful Zoe is. I can see how amazing and wonderful she is and I can celebrate every little milestone. If I had a typical kid, I probably would not have noticed all that is involved in every little step. Typical children develop so quickly. You blink and they are running around. Our kids (1P36 kids that is) develop at a much slower pace. And yet, I feel as if I blinked and Zoe is almost two. She is rolling around, signing, using her hands, smiling, etc. I can remember the difficult early days when we weren't sure if Zoe would even be able to smile, laugh, or feel happy. And now look at her- her toothy grin makes me laugh every time. And so it is a loss but such a gain so that I am now able to appreciate the gains and let go of the loss.

But my friend pointed out something I had not thought about. Even though I celebrate every milestone and I support Zoe in her next step, I do not allow myself to dream or hope for her. I do not put a time on when I think she should achieve the next step (which I think is a good thing since she will get there in her own time). So how do I balance being realistic in my expectations and being a mom and just dreaming a little for her? I know in my heart she will sit up, stand, and walk some day. Is this dreaming or just expecting what potential I see to develop? Many people focus on the fact that Zoe is non-verbal and try to reassure me that she will speak some day. I am so happy that Zoe can sign. To me this is amazing. It breaks my heart that she can not yet sign as much as she would like. I can see the frustration when she is trying to tell me something but does not yet have the words. (This of course being a normal experience of all parents with their toddlers but I guess a little more heartbreaking to think she may never be able to tell me these things). But I see some of the older kids (ok, just one of the older kids) who is getting fluent in sign. Whitney reads, finger spells, knows more words than her parents. She is amazing. And so I guess I hope for that too. That some day Zoe will be able to better express herself in sign. I do not dare hope for verbal language to come along. Why? I guess a few reasons- first and most importantly, Zoe may never speak verbally and I do not want to waste my time hoping for something she can not achieve and have her feel like a failure. Second, I think our society focuses on judging a person's cognitive capabilities based on their verbal communication skills. We assume if someone can not speak verbally they must be dumb. And so I do not want to play into that. If Zoe can some day speak verbally, great. If not, that is ok too. Yes, I must admit I sometimes dream of the day she will speak "mama" but seeing her sign "mama" is just as amazing. To know that she knows who I am and can ask for me is just amazing. It is more than I would have hoped for this time last year.

And so Michael, here is a little dream for Zoe. Right now I am sick- home with fever and flu on Friday and still feverish today. So many things on my to do list that I just want to scream or go back to bed. But I put all of that aside and instead use my mental energies to think about our recent OT visit. The OT mentioned getting a pony walker for Zoe. I told myself, "Don't get your hopes up. Don't even look into it. Zoe is probably too small to fit one. Zoe probably can't coordinate her movements enough to use one." But I put all of that aside and I dare to dream and hope that we do get a pony walker. We looked it up on the internet and Zoe is just big enough now for the smallest size. We may have to put her boots on so she can reach the seat, but she should just fit. And in terms of coordination, perhaps she won't be able to use it. But can't a mother dream a little? Here is a blog that has some great pictures of a child (not a child with 1P36) in a pony walker (I don't think this mom would mind me linking to her blog- she is an amazing mom by the way with two beautiful daughters. She has some great posts on grief, acceptance, other people's comments, etc). I will also link to the video of her child running in the walker. This child was two when she got her walker, but she was higher functioning in her fine motor development, coordination, and expressive capabilities. Also, when the video was taken I believe she had the walker for four or five months. So I know this is not what Zoe will look like. But still, I do dream of her cruising around our house (now I am really glad we thought ahead and got a one floor bungalow with lots of wood flooring) and maybe some day chasing her classmates or her cousins.

http://micropreemietwins.blogspot.com/2007/01/pony-walker.html http://micropreemietwins.blogspot.com/2007/06/who-are-you-calling-poor-baby.html#comments
http://www.adaptivemall.com/ponysize0.html

The OT will be back on Tuesday to let us know what she has found out. She is hoping to get one on loan for us since they are expensive and we are not sure if Zoe will be able to use one or not. One issue is that Zoe arches her back (which is why she can not use a bumbo chair that many of the other 1P kids use). It looks like the trunk support should come up high enough to keep her from arching back too far. Also there is a possibility of getting a head rest if need be. The other issue is that she scrunches her feet up instead of keeping them on the floor. But she is doing this less and less now and she enjoys standing. She actually signs "more" during therapy when we are doing the standing. Sometimes she cries since it is so much work to stand but then immediately signs "more" after she has a rest. So I think she would really enjoy standing and getting around. We'll see.

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