My wife and I were taking a few minutes to catch up with our days when she said, “Did I tell you what Jordyn did today during nebby?”
“I don’t think so.” Nebby is what we call the nebulizer. We have to nebulize our two-year old twins every night to try to prevent asthma from developing and to decrease the congestion in their pulmonary system.
“She was holding her Elmo in a blanket and patting him on the back saying, ‘It’s okay, Elmo. It’s okay. It’s almost over and then you’ll feel better. You feel better, right?'”
Tears were welling up in both of our eyes and we couldn’t say anything at all. I had no trouble picturing my little girl doing that–hearing her voice in my head, seeing Elmo snuggled up in her arms.
“That little girl has been through so much.” My voice sounded hoarse and cracky, and my wife looked like she hadn’t heard me.
“I know. I know,” she said, her voice sounding far away.
Our daughter and son were born almost two-and-a-half months early. She weighed only three pounds. She had trouble breathing and needed a ventilator for a couple of days until she could breathe enough on her own. She spent one month in the hospital before we could bring her home with us.
Two months after she was born, before her due date, and only four weeks after she came home from the hospital, Jordyn required laser eye surgery on both of her eyes to prevent her retinas from becoming detached and going blind. I’ll never forget waiting all morning for the surgery to start while she was starving and thirsty from not being allowed to eat or drink anything – as if the surgery wasn’t torture enough. Then afterwards, my little girl’s face was swollen and she clearly didn’t feel good, but she had no idea what was happening. I wanted so badly to help but there was nothing I could do for her. My wife and I comforted ourselves by telling each other she wouldn’t remember any of this. If it had to happen, now is the best time since she wouldn’t have any knowledge of it as she got older.
A few months later we found this thing on her belly and day after day this thing grew and we had to take her to a specialist. Because this growth could become cancerous, she needed to have it removed. I will never forget pinning her down with my hands to prevent her from jerking around, trying to soothe her with my voice and listening to her scream and cry. Afterward, my ears echoed with the sounds of her screams the way it does after leaving a bad rock concert. All of this while my face was only inches away from the doctor slicing the growth off of her belly. As she grows, her scar grows with her, a constant reminder of that traumatic day. I keep hoping it will disappear, allowing me to pretend she never had to go through this.
Shortly thereafter, we found out that while the eye surgery saved her from going blind, it wasn’t enough. The problem was her brain wasn’t paying attention to the signals one of her eyes sent. If that continued for too long, she would lose her sight completely in that eye. The solution was for her to wear a patch over one eye for one hour a day to try and strengthen the weaker eye.
The hour she wore the patch quickly became the worst hour of the day for all three of us. She would rip it off as soon as we turned away and we would have to put a new one on. Then we started to notice every time she ripped it off, she was ripping out her eyebrow hair as well. The patch the doctor recommended was essentially a band-aid and stuck to her face with adhesive. Before I knew it, I found myself pinning her down once again just to put the damn patch on her. If we put the patch on her, we were clearly causing her pain. If we didn’t put the patch on her, we would allow her to go blind. We chose the lesser of two evils and hated ourselves for hurting her so much.
Then the doctor said she needed to wear the patch for six hours a day because her eye was getting even worse. Getting Jordyn to wear the sticky patch for most of the day was a horrific struggle with neither of us winning. She would rip it off, we would put it back on only so she could rip it off again. Within a day or two she developed irritation over her eyes from ripping the patch off so much. Fortunately, I found a place on the web called Patch Pals (www.patchpals.com). The patches could fit over Jordyn’s glasses and they had designs on them. We bought her a panda and a helicopter to try out.
They changed everything. She thought they were adorable, she got to choose which one she wanted and if she took her glasses off, it was easy and painless to put them back on. All of a sudden six hours a day was relatively easy – which worked out very well since when we went back to the doctor he wanted her to wear it eight hours a day. He also told us she would have to wear it eight hours a day for about one year and would wear a patch for a significant part of the day until she was six or seven years old.
During the initial patching period, we found out that both of our children have something called Reactive Airway Disease. It is essentially the precursor to asthma. Both of our children’s air passages are smaller than they should be (primarily because they were born so premature) and when they get colds, the mucous restricts airflow and they have difficulty breathing. To prevent this from happening, they have to be nebulized every night with a preventative medicine and, if they have a cold or are coughing, with an additional medicine as well.
It has been almost three years of surgeries, of patches, of nebulization. Three years of consoling ourselves that she has been too young to remember what she has been through, that it probably hurts us more than it hurts her. But when my little girl comforts her Elmo, mimicking the way we have comforted her through all that she has been through, our hearts break. She does remember. Maybe not all of it, maybe not everything, but too much. And as much as I want to, I can’t do anything to change that.
But I have to remind myself that she comforts Elmo because she has experienced our comfort, our love, and it has helped her. When I see her running around or intently watching a video or trying to read a book, I wonder if, even though she has been through so much, and remembers more than we had hoped, she has been affected less than we feared. My little girl doesn’t have cancer, she can breathe well, she can still see. It could’ve been so much worse for all of us. Everything we did was not to hurt her, but to save her from something even worse. She comforts Elmo because we succeeded, not because we failed.
Image by: Blake Campbell, SXC