Getting to comfortable in not being more attentive to Lillian. It has recently really sunk in that she needs constant attention. In many ways she is much like a very young child that doesn't understand many many dangers. For starters...stairs. We had been letting her travel down 7 or so stairs alone. (and up) until last friday...she was about halfway down the basement stairs with an older sibling close behind when she just got a little off balance about half way down and tumbled to the concrete below. I had been upstairs with the baby. Let me tell you friends, it was traumatic. For her, for the two older girls and just down right scary for me. Both girls were crying. Lillian wouldn't move. The child has no meat on her bones and she doesn't have protection skills. (meaning she doesn't think to try to protect her head and such) to make things more difficult, she can't tell us where or if she's really hurt. She's always a little off balance, but when her ears are messed up she's even worse...falling constantly. A few weeks before that, to make a long story short...she stuck her whole sleeved arm down a burning jar candle. It's a miracle she didn't catch herself on fire. There was another dreadful thing that happened, but I think my brain blocked it out because I can't remember it...but it was in between the candle and stair incident. In a lot of ways, it's as if I have two infants. I knew things would get a little more complicated with Ezekiel adding in and now that he's crawling and putting EVERYTHING in his mouth...it has gotten super challenging around here.
Fears, have I mentioned fears? She is suddenly afraid to go to the bathroom alone...she's suddenly terrified of thunder. We can't take her to band concerts and totally freaked out at graduation...OH that was it the other trauma. ( I think I blocked that out for many reasons) And the wind. She's afraid of the blowing wind. I think it's because she can't physically combat the wind they way we do. She won't stay out side if there is any kind of wind blowing even if the day is beautiful. Sigh. If she wakes in bed alone she freaks out. If I go to the bathroom and leave her alone...freak out. Traffic noise on a road or a parked big truck outside a building idling. What's scary about that is the only thing she thinks of is getting away from what it is that is scaring her not comprehending there is danger in the way she is trying to escape...
We have also noticed a marked decrease in her activity level. A LOT of resting on the couch. She used to be up and running all day, but in the last months we've seen quite a change. I've also noticed lots of episodes of apnea during sleep. All things that will need to be addressed at our next pulmonology appointment and I'm sure another sleep study will follow which we do NOT look forward to. While I'm not focused on these issues...it does scare me. Matt pointed out that she is getting bigger and perhaps the lung damage she has is making it harder for her keep up. That strikes fear in me like I can't explain...but all I can do it give it to God. It nearly breaks me in two when I think of the what ifs. I know I know you're reading this and thinking...Michelle you can't do that...but I'm just keepin' it real guys...
In related news, I mentioned our housing situation seemed a bit sketchy...and I was right. We've been given an ultimatum. After the fall on the stairs I'm pretty sure we will not be staying here. We have been offered another home by friends, but it is not in this area and if we can stay in this area that would be our preference. So prayers for that situation.
I've had so much weighing on my mind. I read somewhere on facebook, I think a quote by zig ziglar that your past doesn't have to dictate your future....I strongly disagree... .
I want to have my OWN home and a home that works for my daughter. That means one level and a finished or partially finished basement that can be closed with a door. We have to have central air due to her lung issues. And I don't want to have to move my kids to a new school again. So many things out of my control leaving me feeling like there are little to no options. Thank goodness I'm not in control anyway, but it's still hard. After typing this I'm thinking it sounds so depressing...but this is our walk and this is the real. AND, I just really needed to get it out. I'm struggling with feeling isolated from "normal" and from people who have kids with special needs who have a support network. It seems people who have SN kids with commonalities hang to each other and I get that, but I feel lonely. A lot. *inhale* now I have a big painful lump in my throat....
On a positive note....she's a light and we are all brighter because of her. We press on and do the best we can changing as the path moves us.
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