What I am about to say may sound awful and wrong, and it may seem to contradict my desperate desire to hold our son alive and to look into his eyes and seem him looking back at me, but believe me, it doesn’t.
A small part of me wonders if it isn’t better if he is stillborn.
I’ll take a moment to let everyone absorb this shocking statement. Yes, I said it. I wrote those words and let everyone that follows this blog read them.
And when I say “better” – I don’t mean better for me. Whatever happens to my son, there is enormous grief coming for me. Grief that I fully expect to swamp me. Grief that I can feel here, every second, sitting behind my eyes like a thundercloud. It never leaves me. Not at work, not at home, not in the car, not when listening to the radio. It is always there, a gathering storm that threatens to drown me.
I love this baby within me more than almost anything in the world, despite never having heard his baby sighs, held his dimpled baby hands. More than anything, I want the doctors to be wrong, and I want him to live a happy and healthy life. I know it is not to be, and so I want him to at least live a life filled with love and as little pain and fear and loneliness as possible. If he lives, how will this be possible?
He has an incurable disease. There is no cure even remotely on the horizon. He will never be well. Everything we do will be a stop-gap measure to prevent his impending death. If we are INCREDIBLY lucky, he will survive to his teens, perhaps early 20s. He will need extensive coordinated medical care. His life will be filled with doctors visits, physical therapy visits, and interventions to keep him comfortable and happy. He will never run. He may be fed through a tube for most of his life and never know the joys of good food. He may spend much of his life wheelchair bound.
And as for us, we are barely hanging on with twice weekly doctors visits. My work schedule has been altered to help with the pregnancy and that has turned out to be a blessing in disguise, as it has also helped me emotionally deal with this (if I were still on nights, I’d be having panic attacks, I have no doubt). I will likely not be able to go back to the night shift if he does survive – at least not for some time. All the same, the doctor visits are exhausting.
How can my husband and I both work full-time and support our family and somehow live a life of continuous doctor’s visits? If we can’t both work full time, how can we ever get financially ahead and secure in life?
In all likelihood, James will need heart surgery. It could necessitate weeks in the hospital, possibly days to weeks on a ventilator. My husband and I both work full-time, and the heart surgery would be done in Charlotte. How can we afford to travel, miss work, have heart surgery for our child, and not go bankrupt? With us both working, we were finally starting to get ahead financially and have substantial emergency funds available. That will dwindle rapidly in the face of having to take time off work.
Even worse, we are going to be faced with making medical decisions that will literally decide whether he lives or dies. We will have to decide whether we do everything we can to save him, or whether we should stop at some point and say that we cannot fix this, and we need to let him go. How can a parent do that? How can a parent say, “no, don’t give my child potentially life-extending cardiac surgery?” More importantly, how can I do it? How can I make a decision that may ultimately lead to my son’s death? How can I ever know that my decision was right and that I didn’t give up on him? How can I deal with the anguish of this question? I see pet owners struggling with this at work, and I have to help them make that decision. But those are cats and dogs. They are not my son.
I’ve always known or thought I knew that I wouldn’t be in favor of treatment for terminal illnesses – but I always thought about it in the abstract and about older people with incurable cancer and those sorts of diseases. This is a baby we are talking about, MY BABY, but his disease is no less deadly in the long run.
I am not a selfless person. Time and again recently I have been told what a good, brave mother I am. But I’m like everyone else. I am still selfish, self-centered. I love my children and try so hard to raise them well. But I am not selfless. I like my alone time after the kids go to bed. I like when they are napping or occupying themselves so that I can do something un-child related. I like having lunch with friends that doesn’t involve my kids. I like going to the bookstore, drinking coffee, and having quiet, child-free time. I look forward to the day when they are both really self-sufficient, and I can not feel guilty about being on Facebook or doing something that doesn’t directly involve them. I’m excited about when I am finished with diapers.
When I think about what happens IF James is a survivor – if he lives 10-20 years (which is rare, I know how rare it is), I cannot imagine devoting my life to the care of another person who will essentially be a toddler for his entire life. Yet, when I think about what I would do for Evaline or Hazel, should they be injured or incapacitated, I know I would do it without hesitation. And I know when he is born, if he is alive and survives, I will do it for him. It’s a paradox.
How can families function in the face of a sick child demanding so much care, time, and financial resources? How can we pay attention to our girls, give them what they need, when we will be consumed by our son’s needs? How can we pay attention to each other and our needs?
These are the things that you aren’t supposed to say as a parent – these terrible considerations. Life. Death. For my son. When is enough enough for a terminal disease? What is too much? How much is too much? When will I know? How will I know? How will I go on living when he is gone? Do I value my son’s life less because it could be a potential huge burden on us in many, many ways?
Last night I dreamt that we were staying on the beach in a house. A tsunami swept towards us, but we were able to make it to the second floor of the house and be safe. But then, as we watched the ocean, a massive tsunami started to form far out at sea. We could see it coming, and there was no escape from it, nowhere higher to go. We were trapped, waiting for this massive wave to swamp us. In the end, I knew that struggling was futile. I knew that there was nothing I could do but be swept under by the wave. And so I let go and accepted it. Just as I must let go of trying to know what is coming and just accept that it IS coming, and we will deal with it, one day at a time. Whatever that looks like.