The other day I overheard a conversation I should not have heard. I have not stopped thinking about it and am full of regret now that I did not jump into the middle of that conversation. I was standing in line at the grocery store and there were two women behind me with their young kids, talking about preemies and their opinion about the medical intervention it takes to save the life of a tiny baby. A baby in their opinion "wants to die, is not supposed to be saved, has selfish parents that do not recognize what they are doing in order to keep the baby alive". I am assuming a magazine article about the Duggar preemie sparked their conversation. I sat there listening to the conversation go on. About parents going against God's will in keeping them alive, about babies suffering because their parents refuse to let them go, about the horrible "quality of life" that a very early, small preemie will have.
The rational part of me said that these were people who have never been faced with the situation of choosing to keep your child on support or let them go, of doctors telling you that they do not know if your child will live through the night - and if they do live that your child may face several disabilities and health problems, they have never had to hear the words "you have a very sick baby" when all you want is a family. These people do not know what it is like to try and try and try for a baby only to have the worst happen. These people have never been on my side of the fence. They are the fortunate ones that have never had to make difficult decisions in order to have their families.
The rational part of me said they were just ignorant and to let it go, and not to make a scene in the middle of the grocery store. The irrational part of me wanted to punch them in the face and tell them to shut the "F" up.
I sat there just being angry and not being able to find the balance between the rational and irrational sides to tell them calmly and intelligently how wrong they were and if they saw my son and his "quality of life" that they might think differently. That if it happened to them, they might think differently. So I did nothing. Now, I want to go back to that moment. That moment where I had the opportunity to educate them, to show them a different view. I am angry at myself for not standing up for my son and for my family or the choices that we made and continue to make everyday. I want a do-over.
I want to tell them Aiden's story. I want to tell them how much we wanted him. How hard we tried to get him. How hard it was to watch him struggle for life. How hard every decision was. How hard it was to sit in a room while a doctor told us that the baby that we tried so hard for was on maximum life support with tiny, scarred lungs and that they found a large part of damage in his brain. How we had to answer the question "how long do you want to keep him on life support?", "how far do you want us to intervene to save him?". I knew all the bad things that could happen, all the side effects from his prematurity that he could face. I knew he could have delays. It only took me a few moments to come to a conclusion about his" quality of life".
"Quality of life'. It always bothers me when people say that. What does that mean? If Aiden never walks without assistance, or has to have physical therapy or speech therapy or wears special shoes for his feet - why would that mean he has a poor quality of life? If he was diagnosed with Cerebral Palsy or was permanently disabled, why would that mean that his life is not a good one? Why do we associate disabilities with a "poor quality of life"? Because my child has a delay in gross motor skills, someone is going to question the life that he has, the love that his whole family gives him? Why do we place so much stock in children developing on a schedule? Does it really make a difference if a child walks at 9 months vs. 19 months vs. 29 months? I don't get it. Aiden is happy, he smiles constantly, he laughs, he gets kisses all day. I tell him how much I love him every 5 minutes - I don't EVER question his quality of life. Not for a second. Even in the toughest times in the NICU there were moments that our little family of 3 was cuddling together and content, even if things would have gone a different way, I would not have traded those moments for all the money the world. Even if he had come through it with a severe disability, I would love him just the same, kiss him just the same. His quality of life would be the same - wonderful, because his family loves and cares for him.
I have heard a lot about God's plan - when we were doing IVF to conceive and during Aiden's hospital stay. I don't know if I believe in God, I believe in being a good person - not because I have to, but because I want to. I would like to think that if there is a God, that he gave us Aiden just the way he is, and that he also gave us the intelligence to develop the technology and the people who have the skills to save his life. Just because God did not give me a full term healthy child does not mean that it was not in his plan for Aiden to be with us.
Sitting here, writing this with my son on my lap, I know that we made the right decisions. I can't imagine why anyone would think they have the right to question those decisions. As a preemie parent you make difficult choices for your child and then you help them to grow up and learn and perhaps overcome some of the consequences of those decisions. It's your job. It's what I signed up for the day I sat in that room with Aiden's doctor and said "I want you to do EVERYTHING to save him".
And do you know what?
I love my job.
