Sunday, September 9, 2018

Infused with Gratitude and Antibodies



I am so grateful in this moment to hear the steady tick of the intravenous immunoglobulin being infused into Sophie's body. I'm grateful for the gentle ministrations of the home health nurse who has already spilled her life story to me -- a life story very different than mine but I'm open to -- well -- everything. She will be here every day for the next four days and then monthly for the next six months.

I am so grateful for all the support we've gotten in the emails, texts and comments here on the blog and on Facebook over the last couple of weeks in particular. I'm particularly grateful for Christy H, a friend here in Los Angeles whom I never see but who also has a child with special healthcare needs. I got a delivery on Friday from a courier service, opened the large box and found a beautiful note from her and her husband and a bottle of very fancy champagne and a bottle of beautiful rose. This just brought me to tears, to tell you the truth. Here it is next to the hard-won medication that is being infused into Sophie's veins with the hope and expectation that it will help her to recover from the terrible syndrome that has caused Sophie so much suffering. How many folks do you know who have such riches side-by-side in their fridges?




I hope your Sunday has been a good one. May the week ahead be filled with champagne and necessary blood products.

14 comments:

  1. I raise my glass with you...in hopes that it will help Sophie as quickly as it goes in.

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  2. Medicine comes in so many shapes and sizes and alchemic mixtures.
    And in human stories.
    I am glad to read this.

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  3. I'm thankful that Sophie is getting her IVIG, on a regular basis and into the future. That must be such a relief for you. Sending hugs for both of you.

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  4. This post is right up there with when you told us you were in love with The Photographer.

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  5. breathing deeply, finally, on this. On Sophie getting the help she so desperately needs. Your friends being so sweet that you cry with gratitude and appreciation. I'm loving it all.

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  6. thinking of you both and the boys too. xxoo from calista & harry

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  7. You cannot keep a Grateful Heart down, I am so Happy for you!

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  8. I'm so glad to hear this. You knew what to do and you made it happen. I know it's at great cost, this fight, but you still did it.

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  9. Oh my gosh. I think I've missed a lot here. I'm glad Sophie is getting her medicine and I'm going to keep reading to catch up...

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  10. It should not be this hard, but so glad that Sophie is getting her medication and hope she is feeling better soon.

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  11. I’m so glad this is working out. There is a sense of peace in this post. May the healing continue for Sophie and for you too. Thank god for you.

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  12. I was so sorry to read about the difficult period you and Sophie have been through. I hope the IVIG brings a dramatic improvement in her functioning. I had presumed that C. had experienced in her 22 years of seizures, every epileptic permutation possible but had never even heard about ESES. Your fight to get her the treatment she needed - and paid for by your insurance - was amazing.

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  13. I raise my glass to you, over and over again. You inspire me.

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