“Those who don't know how to suffer are the worst off. There are times when the only correct thing we can do is to bear out troubles until a better day.”
One year ago today, we were staring down the barrel of one of the hardest years of our lives. This was attempt #6 for a cornea transplant, which in our world, isn't super promising. If that wasn't enough, her brain shunt was malfunctioning, and John and I were up every hour at night readjusting her as she slept to keep her head elevated. I was also in the midst of first-trimester sickness. I was scared, angry, frustrated, and exhausted in every sense of the word. And it didn't get any easier. New transplants bring a ton of baggage with them, and keeping up with all of it with a small child is no easy task. They are extremely vulnerable, especially for the first few months, but continue to be for a long time. They require constant care, protection, and 'round-the-clock medication. Conveniently for us, we were already up around the clock due to her shunt issues, so peeling the tape for her eye shields off every couple hours to do drops was just added to the list. Plus, at that point, we were seasoned veterans. The very first Peter's Anomaly mom that I ever met told me, "it will eventually get easier, not because they are cured or get better, but you get used to it and that makes it easier." This is so true. When I look at things I handled last year versus when Avery was a newborn, it's like night and day. Even the simplest thing like eye shields at bedtime. I used to cry over the fact that we had to tape metal shields to our baby's face - it chapped her skin, made her poor little cheeks red and pulling it off was torture - for her and us! But now, nearly four years later, Avery just lays there and says "on" and "off" when we do them, and we don't even think about it anymore. (Although learning about gentler kinds of tape definitely helped!) Practice makes perfect, and sometimes you're unfortunately practicing things that really suck, but you get better at handling them. THANK GOD. Don't get me wrong, I had many a breakdown last year, and if you were a fly on the wall at my house, you probably wouldn't think I was handling it very well, but in the grand scheme of things, I'm pretty impressed with the three of us. That surgery one year ago was the first of four major surgeries for the year. In between, there were countless other struggles. One year ago, I thought our lives were unraveling at the seams.
But today, in this moment, I feel like all the stars are aligned. Funny how life is. It will knock you down over and over, but while you're down, you remember the times like these to keep you getting back up. Avery is doing better right now than she ever has. Her health has been great since September. This one year milestone is one she has not previously achieved. If we're really lucky, we'll celebrate another (her right cornea) on March 21st, and if we're lottery-winning-lightning-striking-twice-lucky, we'll celebrate another (one year since her last shunt revision) on August 14th. Developmentally, we're ecstatic with her progress. If you keep this kid out of the hospital for longer than a few weeks, she'll impress the heck out of you! Between the span of time since her last surgery, her awesome team at school, and having a sister to make her more independent, Avery is growing by leaps and bounds. She's saying a ton of words, using her cane like a pro, and mastering all the letters, shapes and colors. I'm beyond amazed by this girl every day, and she's my number one inspiration. She's defied so many odds, and does things that we never expected her to do. And thankfully, we never take one of those things for granted. We sit back in amazement, smiling ear-to-ear, each time she says a new word, or recognizes a color, or gives her sissy a toy to keep her from crying. If you would have told me one year ago today where we'd be now, I would have been so incredibly relieved. But that is what keeps you going - the knowledge that anything is possible and whatever hellish situation you may be going through at any given time is probably temporary.
We are so proud of Avery, we need a new word for "proud." She continues to be an overcomer, and her positive light is seen by everyone around her. Happy One Year, and here's to many, many more!
(Last year, her failed grafts were very cloudy and she had a lot of trouble getting around. She put objects right up against her eyes to try to see them and she ran into a lot of walls :( And the most tell-tale sign: no red reflexes from the camera flash. Now today, her new corneas are clear, and as you can see, the reflexes are visible!)
