All the forgetting

Dear Porter,

Just a few days ago, we celebrated your third birthday. Many friends and family joined us to have a nice meal, ice cream sundae's, and gifts. Your mom and I thanked everyone for the love and support these people have given you and our family since you were born. We also took the opportunity to recognize the wonderful gift that your organ donor gave you. We all raised our glasses to toast Jamie and the opportunities she has given you and several others to live a more healthy life.

At that moment, an interesting notion came to me. It occurred to me that because you received your transplant at nearly exactly 18 months old, your third birthday marks the time in which you have had your new liver for also exactly 18 months and, half your life. First of all, I can hardly believe it's been 18 months since transplant, and in a juxtaposed way, it's also hard to believe you're only three years old! Most importantly, as the months and years progress forward from now, the fraction of your life in which you endured the extreme symptoms and consequences of your Urea Cycle Disorder will continue to get smaller and smaller. That is a dream come true for us! You will not have any memories of the struggles you and our family faced during these first three years, but as the two people with the most detailed memories of this time of your life, your mother and I are both ecstatic about that dwindling fraction, and also somewhat fearful that we will, over time, begin to forget the time when our family struggled together and grew in ways we never thought possible.

Your mother has a much better memory than I do. So, for me, the forgetting has a significant head start. I noticed a few months ago that I couldn't remember when you received your G-tube. And, just the other day, while looking through the photo album, I realized many more things that I had begun to forget.

I have started to forget the precise schedule for your metabolic formula and Buphenyl medication the nitrogen scavenger that you couldn't go more than four hours without. I do remember the smell and taste of the medication, however!

I have started to forget exactly how and when we decided to transition you off the formula pump. I do still remember holding the open formula syringe, barely able to see it, and slowly, messily pouring the formula into your G-tube only to realized in the minutes after that the tube has become disconnected and I've actually been pouring formula on you, the chair, and the floor the whole time. I guess I remember more than I thought!

I've started to forget the feeling of being aroused suddenly and violently from my sleep by the sound of you crying and vomiting.

I have started to forget the rushed trips to the hospital in Burlington in the middle of the night and the agonizing wait for the blood lab work and the disappointed but not surprised feeling when the result came back, high ammonia.

I have started to forget the faces and names of the emergency department doctors and nurses we came to know so well. I do fondly remember, the warm welcome we received from PICU, every time.

I guess what I'm trying to say is that sometimes forgetting causes mixed emotions. Someday, the detailed memories of managing your metabolic disorder will have nearly completely faded. And, losing memories can be sad. But, we couldn't be more pleased with the upside of all this forgetting. You are healthier today than you have ever been! We are proud of you and we can't wait to see what great things come next. Happy Birthday.

Dad