Lucy had her Madison clinic day last week, and at the suggestion of Dr. Schroth, we took Lucy in today to see a pediatric ophthalmologist about her strabismus. After a 3-hour appointment (and Lucy having her eyes dilated and then pried open while she cried - NOT fun), the doctor said that the inner workings of her eye looked like they were healthy and developing well, but she has rather severe astigmatism. The kind that she probably won't grow out of. The kind that needs corrective lenses.
While this may seem like an easily fixable, minor - dare I say paltry - diagnosis, especially in the face of SMA, it has upset me more than I realized. I haven't been sleeping well lately. Having a hard time falling asleep, really. I can't seem to shut my mind off. It's always racing with the next idea, what I have to do the next day, things I have coming up, and how I'll squeeze everything in.
As I lay in bed in the wee hours of the morning after finishing a project last minute, I find myself crying. Crying because no matter what I do, no matter how much I do, I can't do what I really want to do. What I wanted to do. Have a healthy daughter. No amount of sewing is going to fix Lucy up right now. I think the glasses were the feather on top of this particular pile that toppled it for a few minutes. Not only does Lucy have to live with SMA every day - something I inadvertently passed on to her - I couldn't even give her decent vision. In the darkness at four o'clock in the morning, I feel like an utter failure.
I know none of this is my fault. It's nothing I could have predicted, it's nothing any of us deserve. I think it's mostly the lack of sleep that makes this seem so much bigger than it is. And, just like the treatments, the BiPAP, the surgery, the loss of movement... we'll become accustom to the glasses. Lucy will become accustom to the glasses. She may not like them at first, but they will better her life - just like all the other things she's gotten used to. And her continued perseverance will just allow me to admire her all the more, which is something I can live with :') Goodnight.
Saturday, March 26, 2011
Glasses = Minor Mental Breakdown
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3 comments:
Oh Barb, I think I can say I know how you feel! I had a few of those days recently. I wish it would all get better but unfortunately for us it doesnt really happen. More sleep will definetely help, so I pray that you get some soon. It also helps a little to know that all SMA moms and dads feel like this all the time. It stinks, but for some weird reason we were chosen to have these angels, and no one is better suited to be Lucys mom than you!! Sending lots of hugs!
Marcela
Barb, it seems that in this world of ours, we get through one thing, have a little "breather", then we enter another chapter. While we know in our brains that it's not our fault, we still have moments of guilt. When I tested positive for being an SMA carrier, part of me was calm, while the other cried....because of me, Ashley has a baby with SMA. My brain knows there was nothing I could do, because I didn't know. But my heart hurts. So I get it. I get how you feel. You will get through this chapter, accept it, and then have FUN finding her cute glasses and sharing her sweet pictures with us once again. It'll be okay.
Barb,
I am so so sorry. Unfortunately we know exactly how you are feeling. The day I feel like I have finally adjusted to our new life, something else comes up. No matter which way you look at it, SMA blows! You and Lucy are so strong, and together you will get over this hurdle. In fact, you look so nice in glasses, it will just add to Lucy's already beaming personality...think of it as an accessory. I wish I was there to offer a HUG.
Now go get some rest <3
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