Things were hard for me for a while. I didn’t even realize how hard until I was able to look back on the last year with the clarity of hindsight. And while I’m not happy with my then attitude and how I felt about things 10 months ago, I am glad that my now attitude reflects so much growth and a new understanding about life. Things are different now. Things are good.
But I still find myself having rough days and there are always appointments to make and therapies to try and wild thoughts of what could still go wrong because one little extra chromosome can wreak so much havoc.
Therapy appointments, and weigh-ins, and blood work, and why is she sweating, and NOBODY MOVE SHE JUST LOST A CONTACT, and what the heck is T3 and TSH, and getting her to take those disgusting vitamins, and holy hound dogs petechia = leukemia does my baby have cancer?
And her eyes. I can get so sad about her eyes.
Sometimes I feel so down about Lanie’s aphakia and I’m sad that I even know what that word means. I feel sad that she has to wear contacts or glasses to have any kind of useful vision and, while I don’t know what either of those things feel like, I can imagine it to be uncomfortable at times, especially for a baby who can’t adjust her glasses or let me know when her contacts need cleaning. She can’t tell me when her contacts are dry or itchy, or if her glasses are hurting her head, or if she just needs a break for a little while.
I feel sad that she has to wear contacts or glasses all the time. All. The. Time.
And that this will go on indefinitely and she may be a teenager before she can get her implants.
I feel bad that I can’t know for sure what her vision is like. Are the contacts blurry? Could we be doing more to help her see?
Lanie’s ophthalmologist sometimes needs to do extensive eye exams that make her sad.
And that makes me sad.
I have to remind myself often, as Dr. Mickler firmly told me on the morning of her first surgery when she was just 7 weeks old and I was asking a million questions that he had already answered at her appointment, that the alternative to this would be complete blindness.
And what sometimes feels so frustrating is actually a miracle. Something to be thankful for.
And that, clearly, she is not blind now.
She sees us and she smiles.
And that is really good stuff.
31 for 21 • baby wears contacts • baby wears glasses • congenital cataracts • Down syndrome • God is. • Lanie