Two years ago Corrigan was hospitalized on the Fourth of July. He had been admitted early on July 3rd, 2009 for his 11th hyperammonemic event. He was too young to realize that he was missing the fireworks but Mark and I could hear the muffled explosions as the city celebration took place on a ridge at the other side of the hospital.
It was a difficult hospitalization mainly because Corrigan was really just hitting a stride in his mobility. He was a new (late) walker and was very unhappy to be tethered to a hospital
cage crib. He was a terrible sleeper and screamed a lot of the night. Every time someone came in the room he would break down, not understanding that he couldn’t just run out the door and down the hall. It was stressful on him, he was nauseated for a longer period than he had ever been before, due to a med error, and spent a day longer “in house” than he should have had to because of that mistake. I am sure the nurses were relieved when we were discharged. They were nothing but kind and attentive to Corrigan but he had some really hard moments that weekend and nothing short of being home, in familiar surroundings, was going to ease his anxiety and discomfort.
That was two years ago and yesterday we celebrated the last 24 months of being wonderfully, blessedly, metabolically stable. Not a single high ammonia in the last two years, not even close. He has weathered all of his colds and illnesses without crisis. I made a few runs into the ER a few times, worried that maybe it was getting a little higher because he was not operating at his top energy level, but even through surgery and a repeat endoscopy, his body never reacted to those stressors.
It seems unbelievable to have made it this far along. Two helicopter life-flight transports, four ambulance transfers and eleven hospitalizations in the first 13 months of his life, we couldn’t have dreamed that his body was capable of holding steady for an extended period of time.
I watch Corrigan run now and wonder what a hospitalization would do to Corrigan right now. He is so unrestricted in spirit. He loves to spin, to climb and run with such joy that sometimes his feet hardly touch the ground. I worry, you’d hardly recognize me if I didn’t, but for now I celebrate.
I celebrate the freedom to pop him in his wagon and walk to the playground behind the house. A ride that, of course, includes a few foam letters and numbers. Most importantly, his green number five.
There are wagon rides in the hospital, with little clips that attach IV poles to Radio Flyers, so that sick little boys can scoot around the hospital unit but there is no playground at the end of the ride. I am thankful that our wagon rides have been out in the fresh air, with songs on our lips and our eyes on the fun ahead.
He forgets that he is only three years old. Actually, he has no idea how old he is, or even what his own name is, but he knows that he loves the wind in his hair and being one of the big boys… Hey guys, wait up!
When he was first transferred and diagnosed, there were many questions on what Corrigan may, or may not, be able to do some day. One of our friends told us that he had a vision. He clearly saw Corrigan as a boy and he was riding a bike. He described the scene and I clung to that in those first dark days. I believe that Corrigan surely will be riding a bike one day and watch out world. If he rides a bike the way he runs, it just might a BMX contract in his future because Corrigan, he flies…
There really is no way to watch your child fight for their life and not come out the other side with an appreciation for every single breath that they take. I can’t take a single moment with Corrigan for granted. Even those rough ones. It’s hard, some days, and we work hard for progress in his development and worry if we are making good decisions to help maximize his future but when we can get out of the house and let him run, he is just our normal little boy.
Our normal little boy with an addiction to foam letters and numbers, head of shaggy hair and music in his blood. Our little boy that can tap out a beat on a park bench and shake his tooshy to the song in his head.
Thank you, Lord for Corrigan. Thank you for the many, many little moments in my life that led me right here, right now. Thank you for providing a dedicated guardian angel that deserves a raise for keeping Corrigan safe when he decides that he is both a ninja and a monkey. Thank you Johns Hopkins team, for keeping our little guy healthy. Thank you friends and family for your thoughts and prayers. Thank you church family for never taking Corrigan off of the prayer list. For sending up requests to God on Cor’s behalf.
Just thank you. Everyone.