Answerless Questions after the Death of a Child
Is it a form of self-torture to ask yourself questions you’re aware have no answers? I’ve been mentally debating this lately. What is your opinion?
At my daughter’s birthday party a while back one of the young guests’ parents came up to me and startled me with what he said. (Let’s call him Tim.) Tim had just been speaking with my husband Aaron and I guessed that they had been talking about Zachary. It turned out that Tim was a pediatric physician and he told me that if Zachary had lived he would have been in Tim’s care. This startled me because I had never thought about what type of post delivery care my son would have needed if he lived.
At the time of the birthday party I did not let myself think about Tim’s words, busy with face painting and cake cutting, but they lingered. And lingered. I began to imagine what it would be like if Zachary had survived. All I could hope for was the special moments we would share, those special moments which were actually the most ordinary events of life; the first newborn giggle, rocking Zachary to sleep, teaching him to walk and to read and ride a bike. I imagined what Zachary would look like and pictured my son Eden. All I could see was the good – and I wanted it.
Zachary had a rare, randomly occurring genetic abnormality that permitted tumor growth in his body. It is called Tuberous Sclerosis, TS for short. People can live with TS but what took Zachary’s life was the size and strength of the tumor around his heart.
I began to wonder what people living with TS would face on a daily basis.
I sent Tim a message and asked if we could talk about it all. He said yes, any time. It took me weeks before I made the call.
Did I really want to have that conversation?
One the phone that day after mustering my courage, Tim told me that the truest way to know what Zachary’s life would have been like would be to talk to a parent of a child with TS. What Tim did say is that the disease varies in severity ranging from manageable seizures to much, much worse. Likely my beautiful images would not have come to be even if Zachary did live because he already had small tumors, besides the one around his heart, throughout many other major organs in his little body.
I told Tim that I often felt guilt, wondering if there was more I could have done to save Zachary. Tim was not familiar with our case history and did not give medical advice, but he told me to trust that Aaron and I had made the best decisions at the time and that those choices were still right today. Tim reminded me of the other side to my situation: if Zachary had lived and his condition was bad, I may feel another kind of guilt for any extreme life-saving actions that were chosen.
It is hard to say, and nearly impossible for me to even write, that it may be more compassionate to let people pass if their quality of life will be poor, not playing God but instead allowing nature take its course. That feels like giving up but it’s all in how you look at it.
Tim told me that many marriages break under the stress of caring for medically needy children born with such physical and developmental challenges. The other living children in those families may also suffer great emotional duress. These things are not guaranteed, but real possibilities.
Truly there are no easy choices, no simple solutions. Every option is hard. There is not one right way. Everyone is so different and every family will handle struggle uniquely.
It would seem that life would not have been all happy moments if Zachary had lived. That’s a hard reality to grapple with.
So why did I go down this road in the first place, asking myself the question of what would life look like if Zachary had lived? What purpose did it serve?
I’m curious I guess. I simply wanted to know. Yet it was also an opportunity to understand my choices better, more deeply. My journey of loss has not changed since that conversation but Tim’s admonition to trust the decisions I’ve made was a helpful reminder.
The questions I had at the time Zachary died still remain, and they continue to be left without satisfying answers, but wondering why things unfold they way they do is not weakness. It is a part of healing.
Alexis, your blogs are so inspiring. I am always touched when i read them. Ive gone through some hard times in my life too. We are never alone. There is always someone who can sympathize with us, those who have been through similar situations. I can see that your writing is truly a form of therapy. Not just for you but for those reading it too. Healing does take a lot of time. Sometimes those wounds will never completely heal but like u said it is not weakness. In time we become stronger. You are truly inspiring. Take care, girl. 🙂 xx
Thank you so much for reading Rochelle! It means a lot to me.
It is strange that people of all sorts of struggles, like you and I, can still have so much in common. I appreciate you opening up and commenting here.
Thank you for the reminder that we are not alone. I think we all need to hear that every so often!
Big hugs to you!
Alexis Marie
i struggled so much with guilt the first few days after our baby girl passed. i wondered if i had done all i could. our little girl had an omphalocele… something that can be and is surgically corrected all the time, but only on babies that have an isolated omphalocele, rather than one that is associated with a chromosomal disorder, like trisomy-18, which is what our daughter had. doctors assured me that we made the right choice to only provide comfort care and not intervene with medical procedures and machines to prolong her life. but when she came out looking so beautiful and not seeming nearly as sick as i thought she would, it was hard for me to let her go. they didn’t even advise feeding her, which seemed so heartless to me. she had to have been so hungry in those six hours that we had her. i was told she was comfortable and not in any pain. but it’s so hard to let her go and feel so helpless. i weep now as i type, just thinking about it. the hospital staff asked if we wanted an autopsy after she passed. we declined, but now i wish we had had one done… to reassure me just how sick she was inside. they told us her heart had a large hole that there were cysts on her brain. reading up on trisomy 18, we knew there could potentially be so many other structural problems throughout that would cut short her life. but when you can’t see them and all you see is beauty on the outside, it is so difficult to reconcile the choices you made with what might have been. i recently found a facebook page about a girl with trisomy 18 whose parents chose intervention. she is a grown adolescent who, though hooked up to a lot of machines and needs a lot of special care, seems to thrive and bring her family so much joy. it was hard to see that… wondering if i did enough. i have to trust that what the neonatal surgeon came in to tell us shortly after she passed is true… that prolonging her life would have only meant putting off the inevitable… that she would eventually pass. well, sorry to ramble. i just appreciate you sharing your thoughts on this. and it’s a comfort to know that, even after three years, you still think about and grapple with this… it makes me feel okay that i still do, too. you are a really good writer. i wish i could as easily write out my thoughts and how i am processing it all and grieving. most days, i don’t feel like i can make sense of all that i’m thinking and feeling, and even when i do try to write, it takes me hours because things are all still so fresh and jumbled… still swirling around.
Thanks for commenting! And reading.
We too declined the autopsy and I haven’t really allowed myself to think through that decision more. I’m sure it’s the right choice for some based on necessity of understanding but I couldn’t bear the idea of Zachary laying, cold and naked, on an exam table, being cut into…. It makes my stomach curl. I’m sure other people may have a differing opinion but for my husband and I we had answers about his condition without it.
I can see how you would want to nurse your daughter… That is your mother-love coming through. I do remember that with my living children they were not overly hungry once born which leads me to believe that your daughter would be okay… Oh man, everything is so impossible to wrestle with! No one has answers. I still wish the nurse/doc had used the suction tool to suck the fluid out of my baby’s nose – but I cannot change this fact. It happened. We could make ourselves crazy contemplating these things…
As far as your writing goes, give yourself the freedom and grace to let it happen authentically. If it takes hours, so be it. If everything comes out in a jumble, that is your reality now but likely over time the various threads will untangle themselves. Believe in yourself. I found (and continue to find) writing very therapeutic.
Hugs
Alexis Marie