I just woke you up from a good rest to give you an eye drop again. I know its 3:30 in the morning but that's what the doctors told your mom and me to do. I know you're tired, put your chin up, tilt your head back. You won't need another drop until morning. I love you too.
You see Bella, when you were born; the doctors told us that there was something wrong with your eye. And while I never considered it "wrong," your mom and I knew that it was different than our own eyes. Your mom and I had some big decisions to make on how to treat your eye, decisions we knew might bring us to where we are now, giving you eye drops at 3:30 in the morning.
Your mom is the engine behind your right eye. She makes the phone calls, schedules appointments, does the research, finds the best doctors in the world to make your eye stronger. It wasn't easy you know. It's been hard on you and hard on us. There were a lot of people that doubted our decision making. Doctors, so called "experts" that said:
"The eye is not worth saving"
"She'll never have any useful vision from that eye"
"Patching won't be effective"
"She'll be legally blind in her right eye forever"
"If it was my child I wouldn't do it"
I heard that so much I started to think they may be right. Your mom cured me of that thinking though.
Dr. Jonathan Holmes at the Mayo Clinic told us there was a 5% chance that you would be able to have useful vision from your right eye. And for us, that was enough of a chance to move forward.
Since you were three months old you have worn an eye patch about 3.5 hours per day in an effort to improve your vision. This has been a part of your life, you have known nothing else. As a baby I remember marching around with you singing "Joshua Giraffe" for hours on end trying to get you to see from your right eye. Cheering every time your right eye noticed me, noticed something, noticed anything.
The amount of patching you have done amazes me. I did the math: 3.5 hours a day for 5 1/2 years works out to 7,026 hours of patching in your lifetime. 292 days of your life, just short of a year, you have spent patching. I don't know anyone that can claim that kind of commitment about anything.
You probably know the other details, eye drops of all kinds to reduce glaucoma pressure, a cornea transplant, and three Ahmed valve shunt surgeries to relieve your glaucoma. The cornea rejecting, getting better, stabilizing. Countless exams under anesthesia, your first at Mayo Clinic on 9/11 as planes stuck the World Trade Center.
Through it all, you have been an angel. You have been wonderful. You have made this easy for us to do. The tough work has been on your shoulders. You rarely complain - you just do.
People always tell me, "Josh, I don't know how you do it, I'm not sure I could handle that." And I think if they had to deal with something they would be able to, they just haven't had to make that kind of a choice.
We had a choice Bella. The choice was to make choices for you because you were too young to make them for yourself. When you have kids someday, and one of them has a problem, you will just do what you have to do, and you won't think about whether or not you can handle it. You will just take on life as it comes and do the best that you can.
Your mom and I had two paths to go down. Doing nothing certainly would have been easier for selfish reasons. We knew that "doing whatever it took" would lead us to frustration, sadness, disappointment, madness and even second guessing. But it has also brought us joy with every small victory, for every low pressure reading, for every time your vision improves.
Some people think your mom and I have to make a lot of sacrifices to preserve vision in your right eye. Getting up at all hours of the night, driving you to doctor appointments in Omaha, sleeping in hospital recliners, flying you back and forth to Baltimore, having the Walgreens pharmacist know me by name may seem like too much for most people. For me, I can't imagine it any other way. Any sacrifice we make pales in comparison to what you go through every day to see better
You have defied all the odds stacked against you.
You alone have proved the experts wrong.
We are blessed to be your parents.