Sophie’s body is starting to fail her. Ok, maybe that isn’t the right thing to say. She’s had so many parts of her body “fail” and she just keeps on going.
She’s been so happy these days. Are these our sunset days, our days to cherish when there aren’t any more to share?
Table conversations with some of my closest friends and I feel like an outsider now. They talk of school advocacy, of day program advocacy, of the need to find future housing/lives for their kids who are getting older as they are. There is no more school for Sophie, except what we create in her Son-Rise/Playroom/Reading room. There isn’t a day program, nor has there ever been one that could support all her medical needs. There is no future housing/ Misericordia for her. I will grow older with her and hopefully out survive her as she cannot be supported in any other way. What most everyone doesn’t understand that to send Sophie to a residential setting would be a death sentence for her. She has to have one-on-one 24/7. Really. This is my life. She is my life. I don’t regret it, it’s just my reality.
Recently she has developed pulmonary hypertension. The right side of her heart is enlarged for unknown reasons, and she has edema (swelling.) We are searching for answers in how to help her, but with her rare disorder, HSAN type 2 (non-CMT) and dysautonomic system, everyone is too frightened to treat this aggressively. I get it. So, is this the end? Only she knows. In the meantime, I want to give her the best life I can and keep her happy for as long as I can. Any parent’s wish, right?
I’m a single parent, having to work to survive. Finding nursing and care while I’m not home is exhausting. Am I now losing quality time with her? Her Dad is still involved and supportive which is a blessing. I have almost nothing left to give her- except love. Trying to find the Grace in this and I’m struggling. I then see the picture that kept me going when my marriage was burning. I will find the Grace in this.