I went out right before our latest ice/snow storm (Thursday night) and got Jonah a new exersaucer. He's gotten bored with his no toys, simple one, and even if I put toys on the tray, he picks them up and throws them on the floor on purpose. So instead of being able to get some things done, I end up playing pick-up, and it's not so fun for either of us. I actually wanted to get him a walker, but they only had two and I didn't like either one, so this is not only an exersaucer but sort of a walker too. It has one stationary leg, and the other two have wheels, so once he's ready, he can walk it in a circle. I just have to be careful with this one and keep an eye on him. As long as he plays with it gently it seems the hand blisters he gets are minimal. He has had a few more than usual though. Still worth it for him to get to play. He seems to like it pretty well, but in the nature of Jonah, nothing really keeps his attention (except TV) longer than fifteen minutes.
Hangin' out with Dad. This one is from yesterday. Matt's hair was covered in slobber after this. He was somehow surprised by this even though Jonah was actively eating his hair the whole time he was up there.
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Please be in prayer for Baby Andre's family. He had Junctional Herlitz EB and died today. He wasn't even three months old.
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I'd like to say I'm feeling much better and I'm back to my normal self, but I'd be lying. I just can't seem to snap out of whatever this is. I feel like my energy and strength have been completely zapped. I've run out. I don't know why, after 11 1/2 months, all of this feels so heavy. It's weird because, besides his little boy part issues (still going on) and refusal to eat solids, things aren't really any different than they've ever been.
I keep praying that I'll stop feeling sorry for myself and snap out of it. I know Meg and Courtney and all the SMA moms and about a million other moms to special needs kids have it way harder than I do. In the scheme of things, we are super blessed and things are so much better than they could be. My head knows that. My heart is harder to convince. I get so mad at myself because I know that I have so much more help and support than most people. I'm completely surrounded and could call on about 20 different people at any given time, and they would be here. But somehow I still feel isolated and like nobody really gets it.
It's so frustrating.
On another note, a couple of you asked how I would want someone to ask/approach me about Jonah. I can't speak for any other moms, but I know I LOVE for someone to look at Jonah and smile (either at me or at him). And I like it when they say that he's cute or comment on his eyes because it lets me know that even if they are noticing the blisters (which of course they are), they can see beyond them.
As far as what you should say (should you feel the need to ask), don't ever say, "What's wrong with your baby?" Obviously something is "wrong" but we don't need it put that way. If other special needs moms feel like I do, the last thing we want is for someone to remind us that there is something "wrong" with our kids. We feel isolated enough as it is. I've gotten asked if he got burnt or has the chicken pox. I guess that's fine, but as far as asking a "what's wrong" or "what happened" sort of question, I don't really know what a nice way of bringing it up would be. I'm not really one of those people who would approach a stranger about their child's disability (not saying there is anything wrong with that) so I don't know how I would ask.
Honestly I think I would just rather be left alone most of the time (or maybe that's just because of this funk I'm in.) I think when I get out I just want to get to pretend for ten minutes that everything's okay and "normal". I mean I guess if you were asking for the right reasons God would give you the right words. I certainly haven't been offended every time it's ever come up... I just can't remember right off hand how it was brought up those times. I think compassion and loving concern are always conveyed with a smile and body language even more than what you actually say.
I love the idea of the cards to hand out with our blog address and a little info about EB. It's just not something I have time for right now. I do want to educate. I hope it doesn't seem like I don't. I think awareness is huge. But really, I'm just not in a place right now where I can be some huge advocate to complete strangers when all I want to do is run errands and enjoy being out the one or two times a week I actually get out. All I want is a break from EB. And having people point, stare, and ask uncomfortable questions while we're out (trying to get that break) is sometimes just exhausting. I can't really explain it. I'm sure it will get better with time, but right now I'm just in a "I really, really hate EB, and I think its initials should really be B.S., and all I want is for Jonah to be "normal," and I want Gabe back, and I want what every wife/mom dreams of: healthy kids" sort of mood.
I know God has a plan. I know He won't take me anywhere He can't get me through. I know He is with me. I know (believe me, I know) that Jonah is a huge blessing. I know that God is using Jonah, and that Jonah's story is daily bringing people closer to God and his testimony will bring God glory.
I get it.
But I don't always have to like it.
