I am writing this mostly as a therapeutic exercise for myself.....so forgive me.
I have arrived at a place of acceptance. I will try and help you understand how I got to this place of acceptance and what I mean when I say that.
Now by saying I am in a place of acceptance, I don't mean that I have accepted that Keeley is a child with special needs. I was at peace with that a long time ago.
What I have always had a problem with is feeling like I haven't done enough for her. I have cheated her out of a proper chance. I haven't given her all of the opportunities she needed. I have failed her. I have been walking around for seven and a half years with what feels like the absolute weight of the world on my shoulders consumed with guilt. Consumed with 'if onlys'. Maybe I should have done more therapy with her. Maybe I should have taken her to a different doctor. Maybe, maybe, maybe, what if, what if, what if.
Because children with HME and children who have had a hemispherectomy, well, they CAN walk, and they CAN talk, and they CAN eat, and they CAN be toilet trained, and they CAN be educated and they CAN live relatively normal lives.
But Keeley doesn't walk. Keeley doesn't move around at all on her own. Keeley doesn't talk. Keeely doesn't eat orally. Keeley has an ileostomy. Keeley is in nappies. Keeley is considerably behind in her school work.
When I look back over the years, Keeley has done countless therapies, speech therapy, feeding therapy, music therapy, physiotherapy, hydrotherapy, occupational therapy, conductive education, neurodevelopmental therapy, rehabilitation therapy, all of which I followed strict programs at home. She has done early intervention in education since 8 months of age. I have made sure that we have purchased her every piece of equipment that I thought might help her, putting ourselves into major financial crisis in the meantime. She has been everywhere and done everything that we have done and then some. I have spent seven and a half years researching, digging, overturning, searching for anything that might help her. I have spent seven and a half years in desperation. Trying to stop feeling that I had failed her.
I have spent seven and a half years loving her more than humanly possible.
When I say I have reached a point of acceptance, it is more like inner peace. I have been trying to rid myself of that sinking feeling, that overwhelming cloud of guilt that has been consuming me for so long now. I am sure it is going to rear it's head from time to time. But for now, I am going to take on this new way of thinking. That I have done everything I could for her to reach her full potential so far.
That doesn't mean that I have given up on Keeley. She is still attending her therapies. She is still getting all of the medical attention that she needs. But I think I have come to the realisation that she is probably not going to achieve the same kind of things that her fellow hemi siblings have achieved. If she does, well then I will jump over the moon, but the reality is, that she probably never will.
I took Keeley to see her new GP a few weeks ago and we were talking about therapies and Keeley and where she is at and I told him that I felt like she didn't get enough therapy and that I felt like 'she missed the boat'. He turned to me and said "Amanda, what if the boat never left? Some conditions are so catastrophic and traumatic that children simply cannot recover from them".
So, Keeley doesn't walk, she doesn't talk, she doesn't eat. What she does do is light up our entire world with the glow that she radiates. She has a personality that most people only dream they could have. She is funny and witty. She is strong, and brave and courageous. She will fight even when she is expected to give up. She is an extraordinary little girl and I would never change her, ever. I'll take her exactly the way she is over walking and talking any day. She overfills my heart with love and I am thankful for every second that I spend with her!
