This is a bit of a big deal. I've thought about it everyday since it was scheduled a couple weeks ago. The last time Matt had a cardio MRI, it was the final step needed for him to be approved for his valve replacement surgery. Just the fact that we're scheduled for this tells me that we're getting much closer to the dreaded "next surgery."
I use this blog to talk about this every so often... about twice a year when his check ups with the cardiologist come due. But I was looking for an online group or a blog or something similar where I could read others' stories and talk about my own because I'm sure I'm part of a community of mothers that I don't even know about. The trouble is finding them.
There are lots of great groups out there. My friend Tara has begun a blog called Kidz for parents of special needs children. It's a wonderful group and she's become quite an advocate for special needs kids.
But I truly don't know if Matt qualifies as "special needs". He has very few physical limits (contact sports may be out of his future, but he doesn't seem that interested in them so that may not be a big deal) and he's growing fine and independent (he made his own quesadilla for lunch today). It seems selfish to thrust myself into a community of parents with so much more weighing on their hearts than I do. It reminds me of the experience in the NICU when Matt was born. Here was this 8 lb baby surrounded by babies born as small as 2 or even 1 lb. We didn't fit in, although we belonged there.
That's how I feel about so many of the supportive groups I've found online. We don't fit in, but we belong somewhere.
Maybe it's time I start my own. Maybe a group for parents with kids with heart defects. Maybe a group for parents that have experienced their babies having surgery.
What do you think?
5 comments:
DO NOT hesitate to send your kiddos this way for the day while Matt goes in for his MRI. I'm serious!!! I'd like to help in some way. :)
Plus, my kids would love it. Let me know!!!
You belong.
You have struggles, concerns, and worries just like the other families on the website.
When my dad was hurt we looked for support groups all over but never found any that fit our circumstance, but the truth is many of them would have been helpful if we weren't so concerned with "finding the perfect fit".
I say find some a site and if it doesn't fit your needs--them make one--or both! This is your child, this is your life, you need to do what you can to make it work for you!
I think you are amazing and so strong!
Your family is in our prayers!
Don't give up on it. You deserve a support group as much as anyone else in them. We are all just very lucky that Matt is so big and strong. If you don't find one that you can relate to enough to join, then seriously make your own. I'm sure there are plenty of people out there just like you, trying to find a place that they fit. And all they need is you to start it. That's the great thing about you. If you can't find what you need, you are strong enough to start it yourself. :)People need you for that.
Wow. I like Lori's comment, so can I just copy and paste it? All I need to add is the fact that you have a sister down the street that can and will give you whatever support you need. Don't be afraid to ask for it. I may have a busy life but not so busy to ignore my family's needs.
There are all kinds of existing support groups, if you don't want to take on the challenge of starting your own. Its just a matter of finding them. My mom joined an online support group for a horrible colon problem she had last year, and she said it did wonders for her. My mother in law joined a support group when her husband was diagnosed with ALS. And my sister Becky is part of an online support group for people who had peripartum cardiomyopathy. I googled a little and found a couple of links:
http://www.littlehearts.org/StoriesOfHope/Default.asp
http://mlhphoenix.weebly.com/resources.html
http://tchin.org/support/index.htm#achd
Post a Comment