Her poor little eye.
I want to be in control. I want a plan. I want to make a list and check everything off, one by one.
1. Cataract surgery - check
2. Wear contact - check
3. Patch her stronger eye - check
4. Get an IOL - check
5. Julia can see - check
See how easy that would be? Why can't it work that way? Instead we have had -
1. Cataract surgery - check
2. Can't find a contact to fit - check
3. Finally find a contact - check
4. Take out contact because of eye infection - check
5. One month later lose the contact - check
6. Fight with insurance to pay for another contact - check
7. Get a spare contact (that isn't the right prescription but is at least something) - check
8. Lose the spare contact - check
8. Have another surgery - check
9. Wait what seems like forever to put contact back in - check
10. Watch your daughter's eye slowly turn in more and more - check
To take back some semblence of control I asked the PO about glasses. The first doc said no - that it would be a waste because the prescription for her aphakic eye (the eye with no lens) would be so high that it would be like looking through a magnifying glass. Because the images would be so big, the brain would shut it off anyway. Keep in mind this was the surgeon.
I sat on this for a couple weeks and then decided I wanted another opinion. So I talked with the PO that handles Julia's vision - the doctor that determines her presciptions, fits her for contacts and helps with patching. He said that we can do glasses but that it is the least successful option and most kids only tolerate them when patched. I said that I didn't care - I needed something. So off to the optical shop we went and got these:
I know it is vanity to be upset at an eye turning in. But as a mom, I just want my little girl to be happy, accepted and "normal" (whatever that is). The stares with a patch are bad enough. But I also catch glances now because of the eye turn.
The kids had their pictures taken and even the photographer commented on her eye. It was so obvious in the pictures that I came home and cried. Again - I know it is vanity, but my heart hurts for everything she has to go through. At daycare today, when I was picking up the kids, I had to put in her eyedrops. Another mom commented, "She handles that so well. She must be used to the drops." I don't want my daughter to be "used to eye drops!"
I guess I am having a small (okay big) pity party. Maybe I didn't "grieve" when I found out about her condition. I was so focused on getting through the initial surgery and getting a contact that I didn't really "feel" anything. Now that we are just waiting and waiting, I am "feeling" a lot! And I am angry, upset, terrified and angry. Did I mention I was angry? And upset? And crying at the drop of a hat?
But all these emotions are worth it. I wouldn't trade them because with all these emotions I got a beautiful little girl. A sweet, happy, loveable, kissable, squeezable little girl. Who right now doesn't know that her eye is turning and just loves smiles, hugs, kisses and her brother.
Oh Laura, I'm so sorry. Feel free to host any pity party you want, you've been through a lot. I understand. All of us eye moms understand. Amanda's last post is so true- this is some crazy roller coaster ride... Julia is absolutely beautiful and you are a wonderful mommy!
ReplyDeleteI get it, I get all of it. I even get the "I'll be sad later" feeling and now it's later. Julia will learn to see, don't worry (although I know you will) but most importantly she will learn to see herself the way you see her, as the perfect and beautiful baby girl that she is! Hang in there on the other side of this difficult time is renewed strength and perspective.
ReplyDeleteFirst, you deserve to be an emotional wreck because you are handling the job of mommy with TWO little ones at the same time! I always feel a bit like a whiner because I only have 1 kid to keep up with and NO contact. Sort of like a vacation compared to you contact moms. Here's the good thing about a blog-you don't even have to send out invites to pity parties because we are all there as soon as you put up the decorations! Normally this is because we are just stepping in from our own as it is winding down. Venting/worrying/putting feelings into words is the best kind of therapy. Plus, I've noticed that it is SO great to look back and see that we have actually made some progress, despite my frustrations. I will tell you that we didn't even start patching Anderson until he was 11 months old and he didn't even have surgery until he was 13 months old! We caught it late:( So, I know you are so worried and terrified, but YOU STILL HAVE TIME!! Hang in there and get upset whenever needed. I have discovered that mommy love is the fiercest kind there is, but that also makes it the fiercest kind of worry, frustration, dedication, etc...You're doing awesome!!
ReplyDeleteYou hit the nail on the head, Melissa. While our journeys are completely different and eerily similar, one kid, two kids, whatever, it is never easy. Yea, contacts are a nightmare. But your sweet little Anderson started this journey a lot later than our kiddos. You are not taking a leisurely stroll through the park. It is JUST AS HARD! For all of us.
DeleteEmotions are best when not held back. It is very validating just to write it, say it, and truly grieve the loss of the dream every mother has for her child. We want their life to be easy, without worry or trouble. While this is a scenario that is never true for any child born into this world, our kiddos are learning this life lesson a lot sooner than most. So grieve, cry, rant, and realize that it isn't perfect. That is the only way to move on. That doesn't mean that you won't feel that way again the next week or even the next day. But it is normal and it is sad, wrong, and not fair that kids, let alone our kids, are dealing with this. ((((HUGS))))
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