It is natural as human beings to be curious of others, particular when those others live somewhat different lives to ours. We hate the thought of suffering, of poverty, of struggle or strife.
We want to know that we can make it better and that everyone can be as happy as they deserve to be in life. So quite often when people come across families like ours, where profound disability is involved, it is quite typical for them to want to know “will she ever (insert verb here)” – and that’s fine.
You see I am very much at peace with Amy’s cerebral palsy diagnosis, and you know what? I think she is at peace with it too; she doesn’t know life any other way. But what I cannot take is the prospect that she is in pain. Did you know that 1 in 2 people with cerebral palsy experience chronic pain? That’s the part I cannot accept. For us it will either stay how it is, or we will be pleasantly surprised.
So my answer to “will she ever?” is as good as your answer really – who knows? When given Amy’s diagnosis they forgot to hand over a crystal ball. Instead all I heard was “wait and see”… the worst three words you could possibly put together. Not walking? That’s absolutely fine. Who said that the recipe for a good life is being able to walk? Don’t feel sorry for them, we all deal with the cards we are dealt and we will all find our own happiness.
Who said that not being able to eat is the be all and end all? Receiving optimum nutrition via a feeding tube is a fantastic way to ensure your body is getting essential vitamins. Since when is talking the biggest must-have of the year? There is absolutely incredible medical technology out there to make sure people like Amy can access places and live “normal” lives. Since when is quality of life defined entirely by what you can and cannot do? For me quality of life is being loved, having shelter, having warmth and having a warm belly. I know there are people who say they wouldn’t change their child and the disability that they have. It’s a thing that is very personal to each person. Amy has opened our eyes to an amazing world we never knew existed.
She has taught us just how amazing every little thing we do really is. She has made us work harder, she has made us more patient, more loving, more everything. I just wish it didn’t involve challenges for her. I don’t want her to be frustrated, I don’t want her to feel “different” (we’ve all had that feeling at some stage and it isn’t nice). She has so much to offer the world and she amazes me every single day. She is doing things now that we never ever expected – you know she is pressing buttons on toys now?! She is now making choices with her eyes when selecting a toy. She now communicates “more” vocally in a very cute grunt when she wants us to sing another song. When we sing she now sometimes joins in with her own little tune. Amy suffers from severe GERD (very bad reflux) – even surgery hasn’t fixed it, nor does the copious amounts of medication she receives daily.
We regularly try different formulas and blends, we meet constantly with dieticians/gastroenterologists, surgeons, pediatricians, desperately seeking solutions to this rotten problem. Amy also is afflicted with very high muscle tone due to spasticity. Her muscles contract and tighten against her will, her brain forces her shoulders back, her legs straight and tells her to extend backwards – quite strongly in fact. These are the things I don’t like to accept. I worry about future surgeries to relax muscles, I worry that these feeding issues will never end. I worry about so many things. ALL related to her comfort. Many of you who are following our story will know about the absolute feeding hell we are going through. When feeding issues are bad – nothing happens.
Development stops, sleep stops, and the days are spent trying to pass the day until bed time. It has been like this a lot lately. I remember when we got a standing frame and I thought it was to help her to learn to stand. People always think that. Actually it’s to help build bone density as Amy has some osteopenic bones and is at risk of hip displacement. This is one of many examples of expectation management. It’s not about teaching her to stand – it’s about ensuring she is safe and comfortable, it is about prevention of worse things. So when people ask “will she ever walk?” “But what do I really want? I want her to be comfortable. I want her to be happy. I want her to have a set of close friends one day. I want to be one of those friends. I want her to have the same access to things that everyone else does. I want her to not miss out on any opportunity in life.”
“I want her to be her and not feel any pressure to do anything she doesn’t want to and to learn at her own pace. I don’t want her to feel she has to learn anything to impress anyone or for me to brag about – it’s about her development, for her, and no one else.” Our actual main goals in life right now are: sorting out suitable housing for adaptations, improving the wheelchair we have, resolving respite hour issues, resolving major feeding issues (maybe surgery? Maybe a GJ tube?), more work on head control and tummy time, more work on independent interactions with toys, more work on communication, prompting and anticipation skills. But when even one of these things is achieved… for us it is monumental.
As long as we support Amy and try giving her tastes, continue with constant physio, work hard at helping communication via speech and language and switch adaptations etc then I know we are giving her every opportunity to achieve her optimum. No matter what the outcome for our children we will all be bursting with pride no matter what. Amy has endured more in her 20 months that most of us will ever encounter in our whole lives and I have such a huge amount of admiration and respect for her. I wish I had her determination, tenacity and strength. Everyday she teaches me how to be a better person.
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