How Do You Die as a Parent?

It’s a question I live with everyday, haunting me. How do you go on day to day knowing you soon will die- missing birthdays, holidays, graduations, first dances, a million smiles and laughs, tears, and so much more? I know the practical advice is to maximize every moment and to live in the present. I agree with it, I do, but it is so much easier said than done.

Like many parents, when my kids were born I cried. It is such a surreal moment that overwhelms you in the best ways possible. You go from being a bundle of nerves walking in to that hospital and then, when you hear that first scream, the joy and love washes over you. Don’t worry, the nerves return especially with your first born.

You spend the years witnessing their growth. Moving on from one stage is difficult, you grow to love the way they talk, think, act and love. But you know a new stage is on the horizon, one you’ll fall in love with just like all the others. Crawling becomes walking, babbling becomes talking and all the while your love for them grows and grows.

I remember when Fallon was born- she had complications that caused her to reside in the NICU for a couple days. It started when she was delivered- the staff got quiet and all went to look at her while not saying anything. It’s a scary feeling, you hold your breath and sit in silence waiting, as if being quiet and still will make any bad news better. The doctor called me over and pointed out what I can only describe as large skin tags on her head- only a few and non harmful but anything out of the ordinary gives you pause (They were removed shortly after). That coupled with failed hearing tests and the NICU stay was a lot. While she is deaf in one ear, Fallon is a smart, sensitive and caring person with no other lingering effects. But, holding your newborn child in the NICU- wires running to multiple machines- your mind worries and eventually wanders to darker places. Places you’d bargain your life for theirs, places you’d do anything to make sure they never have to even worry about.

So what do you do when you’re losing them but you’re the one slipping away? When there’s no bargains to be made? When you’re running out of options? Running out of time? What can you do?

Nothing yet, yet equalling advances in medicine that will help cancer patients one day. Advances that I won’t be around to benefit from. Maximize the time I have is often the answer- and a great one, one I will do to the best of my abilities. Sadly those abilities get weakened or lessened with every pill and infusion I take. Increasingly I am in a recliner or bed trying to rest and recover lost energy and conserve the little I have. Other times, whether I’m in the chair or not, I can’t stop crying. How do you turn off grief? What are the appropriate number of tears? I will admit, it is rare but at times I have to almost hide for a short amount of time. It sounds dumb but at times I have to hide or take a break because looking at them or being with them is sitting in pain- the pain of death and loss. I’m not afraid to let them see their father cry but the tough, ugly crying might be too much- especially when they do not know the severity of the situation yet.

But as life swings one way it also swings back the other way. Whereas this week started off low I am now balancing out. Those same smiles, laughs and moments that make it hard living with a nearing expiration date also make it all worthwhile. Yes I’m feeling side effects a little more which isn’t ideal but I’m also okay and still here. I’m trying to live by the motto of “Not Today.” As in “Am I dying?” No, “Not Today.” (Thanks Emily).

-Joe