When Teddy was first diagnosed, two of my real-life friends put me in contact with two women who were also mothers of kidney babies. One was a gal who had a blog. Carmen was the inspiration behind this blog, actually. A LLL leader friend of mine was trying to answer some questions for me about breastfeeding with renal failure and in her looking, she found Carmen’s beautiful blog, which included both babywearing and breastfeeding pictures (awesome), and lots of happy uplifting stuff and lots of honest raw stuff.
One was the neighbor of a friend of a friend – my friend Lisa had posted about Teddy on her Facebook and one of her friends in Seattle remembered a neighbor mentioning her son had just gotten a kidney transplant. Heidi responded very kindly to my awkward initial email, which had to seem like it came out of the blue. (Happily, I have come to know that Heidi is also a researcher and a reader like I am and she shared with me many of the kidney-related research blogs, twitter feeds, email loops, etc. that I read.)
I can’t tell you how much Heidi’s and Carmen’s friendship and knowledge and shared experiences have meant to me over the past 9 months.
Heidi also hooked me up with Champions for Renal Warriors, a Facebook group of other mamas with kidney babies (or children). It’s a great place for information and support, commiseration, ideas, and just a sense of not being alone in this. We eagerly await news of successful surgeries, groan together over C-Diff episodes, share our ups and downs, etc. I’m making it sound like we all hold hands and sing Kum Ba Yah together, which we do not… but you get the idea.
One of the kids in the group has had a big struggle the last year or so. Sami, like many kidney babies, has had lung issues in addition to kidney issues. (your lungs need amniotic fluid to develop properly and if the kidney issues result in low fluid too early in the pregnancy, the lungs get shortchanged.) Since I’ve known her, she’s been in and out of the hospital – in more than out – on the ventilator. She was big enough to get her transplant, but not healthy enough.
Sami died yesterday, 2 years old.
Last night, families around the country lit candles, turned on porch lights, set of fireworks, let go of balloons, or turned on every light in their hospital room (in our case) in honor of little Sami.
I know her situation was much different from our own, and to that point, it doesn’t make me MORE worried about Teddy. His lungs are fine, praise God, and I know that fact alone puts him ahead of the statistical curve. But I think ALL of us moms of babies/children with kidney failure worry about our kids, and it just hits a little too close to home. Sami’s been through so much, and her mom Jenifer shared a lot of their journey with the group – many of us grew to see Sami as one of our own, and losing her is just hard. I cannot imagine what Jenifer and her husband Dean are experiencing.