Monday, June 25, 2012

Over it.

This is my daughter getting her blood drawn. She's had it done over a hundred times and I see this look on her face nearly all of the times someone ties off her arm above the site they will stick a small (she disagrees) needle in to get blood that will tell us if her body is rejecting her transplanted kidney (hopefully it won't be). 


She and her brother get these labs drawn frequently. Enough for them to be a nuisance. She especially is upset these days that she'll have to have them forever. While my son realizes and is resigned to the fact that he'll have to have medical intervention for his entire life, it is just sinking in for her. 

Even though right after her transplant over 2 years ago I explained her new kidney wouldn't last forever and that she'd need another kidney and probably two more transplants she hadn't really understood what that meant until recently. 

Preparing the kids for what will likely happen in the future is one of our current tough challenges. 

I don't want them to be surprised about something so major as needing another kidney or their future liver transplants (yes, they know about those too).

Tonight my daughter said, "I hate that I have to go through this forever!" and I hate that it was my preparing her that brought on her sadness. 

For me, it's one of the saddest parts of parenting right now. 

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Julia Roberts blogs at Kidneys and Eyes and co-founded Support for Special Needs. She's currently sharing her daughter's story of special needs here with a favorite bear, Champerina

11 comments:

  1. Oh, Julia! Thanks for bringing this to the fore! We go through the same thing with our son's hemophilia. It is a heartbreaking fact for families that live with serious chronic illnesses. And too often, families hopes are hung on a possible cure that may never come. I wish professionals would focus on better ways for families like us to cope with this dilemma and raise emotionally healthy kids in the midst of it.

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  2. What a hard thing to walk through. But Julia- you always seem to walk through it with such grace. Hugs to you and your beautiful children!

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  3. {{hugs}} It sucks to see them go through regular "sticks" (what my guys still call them). How hard it is to adjust to her growing understanding of what this means for her, for both of you! Wish I had wise words to help but you an amazing woman and have some pretty amazing kids regardless of any words I might have to shed on the subject. {hugs}

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