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Finding Grace While Holding Space

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?

Favorite place- YouTubing and talking with her talker

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.

Image found on Pinterest

4 thoughts on “Finding Grace While Holding Space

  1. Jody,

    Beautifully done. I know this pain so well and my heart hurts for you. You are enough. I see you. I am sending love, energy and prayers of healing to you and Sophie. The word healing can mean many things, not always for fixing the problem, but instead peace in the decisions you may be faced with. I am here for you anytime 331-998-0038.

    Love you,

  2. Oh Jody❤️You are amazing and beautiful. Sophie is amazing and beautiful. This earthly life in these bodies ends for all of us…we each have our time. You have given each other so much. Floating is good❤️Love you.

  3. Thank you for sharing. Gives me something to think about as I look for better ways of making the world more accessible for everyone.

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