This is the blurb from the blog the Mum has written .. (I found her straight forward approach quite refreshing in a different kind of way to my own child's blog ) ..
What is Henry (the Blog)?
I could have written a blog about my kid – the one born with a funky heart. But Henry (the blog) is more than just sharing Henry’s story. Sure, it chronicles our lives during Henry’s years in and out of hospitals, multiple surgeries and terminal maternal hysteria. Good times, indeed!
But I put this site up because I think there needs to be more resources for moms of “heart kids.” There are oodles of great websites to learn more about congenital hearts defects (CHD) and you can find several here. I don’t dispense medical advice, I share coping advice. Rather said, I’ll tell you what I went through so that you can breathe a sigh of relief and say, “Well, at least I am not as crazy as that lady…”
Face it, as hard as this is on your kid, it is also hard on you. When Henry was in the hospital the first, seventh, nineteenth time, I really craved the insight of another CHD mom. That’s what I am trying to do here -- telling my story, scars and all. Every CHD mom experiences their child’s suffering differently. I did it in the most selfish way. As much as I obsessed about my son’s health, I also fixated on how devastating this was to me.
Henry’s particular defect is Hypoplastic Left Heart Syndrome or HLHS. I also refer to HLHS as “Henry’s Little Heart Sucks.” My son underwent numerous cardiac surgeries and then a heart transplant in February 2008.
This blog is primarily for CHD families to find some common ground, solace and a few laughs. Turns out staph infections, snotty doctors and g-tubes can produce some giggles. I’ve added some resources so that you can find “doctor approved” information about CHD as well as articles about the impact on families caring for chronically ill children.
Anyway thought I'd share for others who might like a read ..
No comments:
Post a Comment