So much of life with a terminal diagnosis is waiting. Waiting for the next diagnostic procedure to help the doctors treat. Waiting for insurance to cover (or deny) whatever treatment or care plan the doctors agree upon. Waiting for the next step in the progression of the diagnosis to manifest. Waiting to see if the treatments affect positives or negative change. Waiting in waiting rooms, doctor’s offices, exam rooms, emergency rooms, diagnostic rooms, quiet rooms (where we meet with surgeons after surgery). I’m not a patient person, but I’ve waited (patiently) more than most other moms have, from the moment we discovered the brain malformation at 18weeks gestation, that started this whole journey and changed the plot line of our story. 

I’m currently in the Imaging Waiting Room at our Children’s Hospital waiting as Littlest goes through his routine MRI (he usually gets a full spine MRI twice a year, based on his overall spine health and hydrocephalus). This is by far my most easily waited through procedure he has; there are generally no emergency surprises, very little discomfort, and the general anesthesia is the biggest “risk” he faces. We joke that radiation makes superheroes, so Littlest must be one of the most awesomely gifted superheroes out there. If he were to have an “official superpower” it would be happiness. My dad (a geneticist by training) was discussing with me that he wonders if there is a “happiness gene” because if so, Littlest sure seems to have it in full. (He also said I needed to retain the patent on Littlest’s genetic information, because if they every isolated the happy gene from his DNA, Littlest should get the royalties, so very much a Brave New World we live in.) We then started looking at different people in our family, and pinpointed that there are varying degrees of happiness. There’s joyful happiness of those who enjoy the simple things. Some who are content in life, not seeking to be more than they are. Realists who have peace even as they seem to see the potential disasters, they’re not worrying. Exuberant lives who thrive with the fullest experience they can find.  There are very few, in our family and outside our family, who are as consistently, as simply, basically, happy like Littlest. 

So it got me thinking… what “kind of happy” am I? I’ve had people stop me in the hospital hallways and comment on how I always seem to have a smile on my face. I realized the last time that happened: I smile because I want others to be happy. I may not always feel happy myself, but I can still smile and I often find that having a happy voice (I’ve been accused of sounding like Barbie over the phone… lol) often makes others respond positively to me. I don’t like waiting, but having a smile for the other parents in the waiting room often makes the wait less onerous. 

Do I lose my happiness? Discussing the ways to make something a positive is a challenge I enjoy. I really feel like my ability to look at every problem as a potential positive is one of the main reasons Littlest’s life is so different from other kids with his diagnosis. Sure, I get down (I haven’t met a single mom who is as sleep deprived, dealing with anticipatory grief and all of that who ISN’T down at times!), but I tend to keep that separate from my interactions with my kids. I tend to keep my depression (which I freely admit is a life-long struggle of mine) where only my husband or closest friends see it. But in terms of Littlest, I don’t see his diagnoses as problems to be fixed, but rather as things that we can and will find the positive in, and that we just need to adapt something to find joy in it. Even the waiting. 

Pin It on Pinterest

Share This

Share This

Share this post with your friends!