One month ago today was the most difficult day of my entire life.
After nine months of planning, wishing, dreaming and hoping, my son, Aiden Thomas was born on December 10, 2004. He was delivered by emergency c-section because of a very low heart-rate. At birth he had no heart rate. They were able to restore his heartbeat, and he was taken to the Infant Special Care Unit. Aiden had seisures shortly after birth, and he was on a respirator and tubes for feeding and medication. EEG’s were performed to check for brain function as well as other tests. One month ago today, the doctors told us that Aiden’s brain functions were such that there was little to no hope that he would ever be able to go home. The best case that they could project was that one day he might be able to breathe on his own. That was the best case. He would never walk, he would never talk, he would never be able to feed himself or live without machines.
Long before Nicole and I ever started trying to have a baby we talked about several concerns, not least of which was that her family had a history of pre-mature birth, and that her great-grandmother had been born with only one kidney, and that the genetic trait that caused that, could cause a child to have no kidneys, a condition which is invariably fatal. We knew that with her arthritis, it might not be possible for her to go off her medication long enough to become pregnant and carry a baby to term. We knew we wanted children, and we knew that it may not be possible for us to have children that were our own biologically. We decided that, if for whatever reason, we were unable to have a child biologically, we would adopt, and that if we were to adopt, we would try to adopt a special-needs child. Additionally we had discussed our own desires for ourselves regarding life-support. Neither of us believes that living as part of a machine is living. All of this is to say that we had thought about the risks of pregnancy, the possiblity of life with a brain-damaged child, and our feelings about life support long before we were in the situation where we had to make these decisions.
Could we do less for our own child than for another, or for ourselves. We would happily sacrifice whatever we had to in order to raise a child with special needs and to give them the best life possible, and had there been a chance that Aiden could have lived a real life, we would have given him that chance. But at the same time we knew that what small chance of being medically alive for a longer time he had, was not worth the sacrifice on his part that it would entail. We could not make our baby live as merely a part of a machine.
Aiden passed away on December 15th. As you notice, this was not the day that was the most difficult for me, because I learned more from my 5 day old son, as he left this life, and in the time since than I had in the 27 years of my own life before. In the five days we had, I learned the meaning of love. I love my wife with all my heart, my mind, and my soul. My world revolves around her. I love my parents. They have given me more than I could repay in a hundred lifetimes. I love my brother. He shows me another version of the world than I could see with my own eyes, allowing twice as much beauty into my life as I might have otherwise. I love friends, and I love my cats. But all of these loves combined pale in comparison to the love I have for my son. It is not a love that surpasses these other loves in my life but completes them. It makes them grow and take on dimensions that could not have existed before. Now I don’t just love my wife as my wife, but also as the mother of my son. My parents are now grandparents to my son, and my brother is an uncle. My love is fuller than I could have imagined.
From Aiden I learned that there are amazing people whose capacity to share and to love cannot be measured. I cannot imagine what it must be like for the nurses and doctors who take care of the children like Aiden to know that for all the triumphs of medicine and miracles, there are always the children who pass on much to quickly. But no matter how short or long these children’s lives are, I know that they are loved by people who meet new babies every day, and love every one of them. They care they show, not only for the babies, but for the parents requires a strength that I couldn’t hope to have on my best day. They can turn a hospital bed, a warming table or an isolette into a home for a baby, and make what could be a terrible and frightening environment into one of love and warmth and most importantly, one of hope.
From Aiden I also learned a bit about what is truly important to me. When you know you only have a short time to tell your child all about the world you live in, a world he only visited, you have to distill it down to what’s important. In those few hours we had together, we told Aiden about love and art and music and family. About joy, and sadness. About his great-grandfathers who were waiting to meet him, and about the people who did not get to meet him, but already loved him anyway.
From Aiden I learned how much pain people can take in and still return love and strenght to the world. Life is a precious thing, and it’s easy to forget that one of the things that makes something precious is that it can be rare and difficult to hold onto. So many people I know have been touched by the loss of a child, and I had no idea untill it happened to us. Now when I see a child, I look at their parent and wonder if they know how lucky they are, and if they realize how many people around them have lost the chance to see their own child do the same things, both good and bad. At first I was afraid that seeing a baby on the train, or at work would upset me and remind me only of what I had lost. And when I see a baby, it does make me think of Aiden, but it doesn’t make me sad. I am glad for each and every person who does not have to make the desicions we made, or worse, never even get the chance to make them.
Aiden may have only been in this world for a short time, but he changed the world while he was here, and continues to do so even now. Every day, my life is different than I expected it to be. There is a line in my life that runs through December 10th, 2004. Everything that happened up to that day, was preparation. Every day since has been the result of the change that happened when I met my son. I miss him with all of my heart.
You would have been a month old now, Aiden. Your mom and dad would have been run ragged from lack of sleep and taking care of you. We would have been reading to you, and telling you all about the world. Now you are free to see that world for yourself. I wish I could have shown you more of it, but one day, you will be able to show me things I never dreamed of. I will still take you to those baseball games, museums, and beautiful places because you will always be in my heart. I love you, my beautiful son. I love you Aiden Thomas. And I miss you.