I almost entitled this “The Day I Made Complete Strangers Cry”. But I wanted to show the ending of the story, not the beginning. At the end of this I will copy what I posted in that made complete strangers cry and reach out to support me. And it made a huge difference to me.
Some of my kids are special needs, medical special needs. We thought we were through all the scary stuff and have been coasting for a few years or more, thinking we were doing great and it all went to the background of our minds. We were dealing with behavioral issues, attachment issues, adoption issues (although he too, is adopted), school issues, sibling issues, and all that fun stuff. Then BAM we’re hit in the face with some medical stuff that at first was just troubling, then began to get worse, and now has us running around getting tons of medical tests, but the main contenders would mean my little guy would be blind, or have a rare genetic disorder that is terminal, or leave him in a body that doesn’t move, or he has two separate things going on and has more than one of those! It set me in a tailspin. It brought on my PTSD from way back when he was a baby (he’s 12) and his major medical issues were an issue. I was a mess. Really a mess. In my mind I knew it was PTSD and I was overreacting, because we don’t know anything, yet, and it could be something correctible and he could live a long healthy life. But my emotions were all over the place. But these women, only a few of whom I actually know, came to my rescue, calling me, texting me, posting, supporting me. The forum we talk on has nothing to do with medical issues or anything to do with that particular son. Didn’t matter, they all supported me. I wasn’t alone. I was being held up by a group of sisters, my “tribe”, and I am not alone. I am not an island. I am not on the tv show “Lost”!
Thanks to my tribe for being there for me. That is what support does for you. That is why we need it in these trenches.
Here’s part of what I posted:
I feel like I just got kicked in the stomach. This kid, this loving, empathetic, sweet kid, doesn’t deserve more crap to fight. So far – without a specific diagnosis – the worst case scenarios are – terminal illness… illness where his symptoms get worse and worse and he ends up unable to move… or he has 2 different things going on, one of them being – he’s going blind on TOP of the other medical stuff going on if it’s not related. Gah. Spent a lot of time crying yesterday and not letting him see. He’s a little oblivious so he doesn’t know, which is good. When he was about 8 months old, I held him in my arms and watched him struggle, unable to breathe, for over 8 minutes, his eyes begging me to fix it, til the paramedics got there. CPR didn’t work. None of us knew at that time both lungs had collapsed. In the ambulance his heart stopped, so when he arrived at the hospital he was dead but they kept working on him anyway, were able to drain the air out of his chest so his lungs would reinflate and then got his heart going. Then I got to see him. It was my child’s body, but “he” wasn’t in there. They said he wouldn’t survive the night, and if he did he would basically be a vegetable. I held his hands and kissed his face and told him mommy and daddy would be ok, that if he couldn’t come back and be Z then it was ok for him to go be with Jesus, and we would see him real soon. I let him go once, and he was miraculously (even the doctors were amazed, literally calling it a miracle, when he woke up the next day a true miracle, because he’d had extensive heart damage and it had disappeared over night! and there was no brain damage from lack of oxygen that long – well over 15 minutes) and he was chattering away, like nothing had happened to him. My little boy came back to me. I don’t think I can do that again. PTSD much??? Maybe that’s why I’m freaking out more than I would normally be….