Recently I started trying to move on from my harsh reality, thinking that if I put all the awful things I have to deal with out of mind that I could somehow function better. That, somehow the breath-taking pain would not be so overpowering. I was wrong. It’s not possible. Moving on from the focus of having a child with special needs is really hard because those “special needs” affect life’s everyday functions and as much as I can try to make it seem as if it’s not there and it’s no big deal the reality is that it is there and it is a very big deal.
Sophie has made huge strides in the last year cognitively, she is amazing us everyday. She understands so much and is so present in so many ways, learning to participate in daily functions with more ease. One of the biggest challenges I am facing with her right now is the fact that she wants to participate in those functions that she sees everyone else incorporating in their everyday. She want’s to go outside and play, every time we grab our shoes or keys she’s at the door. She knows that she needs her shoes to go out so she runs to the closet to grab her shoes and takes them to whomever is around to get them on her.
The challenge is that she does not understand why she cannot participate in these daily functions. She doesn’t have the cognitive capacity at this moment to absorb the fact that she could die if she is exposed to certain bacteria. She just knows that she wants to do what everyone else does. And she is determined, she will stand at the door for hours if necessary to get her point across. It ultimately ends with a twenty or thirty minute car ride because I do not want her to feel completely left out.
How can I keep these things out of mind? When I try to coordinate something for my family my first consideration is how can we include Sophie and many times it’s just impossible. Recently I have had to turn down birthday parties because they are held in places that are considered death traps for Sophie, (check-e-cheese, for example). It’s not fair to my other children but there really is no other option than to decline these invitations.
And then there is her health. I put off doctors appointments for some time because we just needed a break, she has been doing exceptionally well except if we skip a day of antibiotics. She has gained weight and looks amazing but the reality is she is a sick child. I tried to avoid thinking about that and then I took her for a follow-up Pulmonary visit. The visit was good, the doctor was happy with how she looked physically and her lungs sounded pretty darn good despite all she has to deal with. This is thanks to her compression vest, I love that machine.
Then we talked about that dirty little disease that could take my daughter’s life, PCD. We talked about how important it is to begin to track the deterioration process and we will have our first comparative scan of her lungs in a few months on our next follow-up. We talked about how critical it is to slow down that deterioration process because if she develops Bronchiectasis there is no going back. The only thing that would save her would ultimately be a lung transplant and the HARSH reality is that this world discriminates against individuals with special needs and no one would perform an organ transplant on an individual with special needs because they are not deemed productive members of our society. As disgusting as it is to deny someone life it is reality. I could see the sadness on her doctors faced as we discussed this dirty truth.
My truth SUCKS. My reality SUCKS. Trying to live my life with all of this out of mind is impossible, I try my best to hold it together but sometimes I just have to give in. I have to scream and cry and feel Just to find the strength to keep going everyday.
Moments like these I hate Cri du Chat Syndrome, because this disorder is the cause of this lung disease and all the other medical complications my poor innocent sweet girl has to live with.
Charity me duele mucho lo que pasa con ustedes, te entiendo y puedo imaginar tu dolor…. Si la opción de vida es un transplante, pues de algunas meta se puede luchar! Levantar la voz por nuestros hijos, no deben ser discriminados por tener su discapacidad mental! Creo que como grupo se puede hacer escuchar nuestra voz. Te cuento que aquí en Panamá hay un chico discapacitado que necesitaba diálisis para poder vivir y también resulta que por su discapacidad no era candidato, pero se lucho y se logró admitir a diálisis. Si esa es la opción, y me toca ir a pedir por Sophie a dónde sea, yo voy! Ánimo! No estas sola…. Se lo difícil que es amiga… Se lo que es vivir preocupado, con dolor por ese ser amado…. Tan puro e inocente…..