Learning the Meaning of 'Quality of Life' After My Son's Terminal Diagnosis

Nine years ago, I took my son, Jacob, to a routine well-baby checkup where I was told that there was something “wrong” with my child. Labs were drawn and I was sent home to wait for the results. Three weeks later, my husband and I were informed that our 9-month-old infant had a terminal and degenerative disorder called spinal muscular atrophy (SMA) type I. The prognosis was grim. The Neurologist’s voice broke when he called to tell us the results… Jacob would be fortunate if he lived to see his second birthday.

After my initial scream of despair subsided, my husband continued the phone conversation, and I regained just enough composure to make sure we made further arrangements to come into the hospital as soon as possible to speak in person with the Neurologist to talk more in-depth about Jacob’s condition — despite the sobs that suddenly wracked my body as I thought about what was in store for our baby. In the blink of an eye, our whole world had just got upended and came crashing down around us.

When my husband and I finally met up with Jacob’s Neurologist, we learned a lot about the disability community. We went from being “average parents,” to the mom and dad of a terminally ill child overnight. I can’t speak for my husband, but I know that during this particular time in our lives I felt lost, scared and angry at the injustice of it all. But I would come to realize in later years how valuable that first meeting with the Neurologist had been because of the impact it had on me as a parent and caregiver.

Allow me to explain that statement.

Jacob’s Neurologist couldn’t offer us a cure or the promise of one in the future, so instead he gave us guidance, direction and a purpose. The Neurologist did that by telling my husband and I what we could do to help our child, instead of only pointing out all the things our son would never be able to do. Jacob’s Neurologist empowered my husband and I by giving us information; that made all the difference in the world because that little bit of power and control helped to make a hopeless situation more bearable. It was because of that doctor that we grew into the advocates that we are today.

I’m not going to sugarcoat things though, for the first year or so after Jacob’s diagnosis, my husband and I lived in a daze. The depression that set in was oppressive and the tension and stress that developed as a result of living with the threat of death hanging over our son’s head day-in and day-out never eased up. Our pain was further compounded when our daughter, Abigail, was diagnosed with autism spectrum disorder (ASD) during that time frame, too.

When my husband and I realized we would never have the types of relationships we had envisioned with either of our children, we completely shut down. We withdrew from the world around us in a vain attempt to protect ourselves because we felt fragile and breakable and we did our best to guard our sanity from slipping further out of our grasps. Believe me when I say we were barely hanging on back in those days. Most of the time we simply functioned on autopilot as we tried to navigate and figure out the new ins and outs of the nightmare our lives had become overnight, where nothing made sense anymore and where we could only find peace in our dreams. We isolated ourselves to the point where we even had a hard time interacting with one another. Some pain just can’t be shared, even if the other individual is hurting from the exact same heartaches. I don’t think my husband or I really began to wake up again until after Jacob’s second birthday, which was a day we thought we would never see since the Neurologist told us that Jacob would probably pass away before then.

By the time that Jacob turned 3 years old, it finally hit us that Jacob’s prognosis wasn’t set in stone, as in, he didn’t have an expiration date stamped anywhere on his body. My husband and I felt that we could stop waiting for the other shoe to drop and we began to live and not just exist again. We let go of our old hopes and dreams for our children and we thought up new ones, which gave us the strength to face the uncertain future once more. We stopped letting our fears and the helplessness of our situation control us and instead we embraced the hope and delight that we found in each new day that Jacob continued to grow and thrive and we celebrated each little accomplishment that Abigail made.

Even though our mindsets had changed, the progression of our son’s disorder had not. He worsened over time and I ran myself ragged for the first seven years of Jacob’s life trying to manage his care myself because I was sure no one could or would take care of my son as good as I can. I hovered over Jacob. I couldn’t rest. I couldn’t relax. I was terrified of letting my guard down because I was positive the moment I did, something bad would happen. Eventually, all that work and worry took its toll on my mind and my body. I turned into a zombie and began to become a danger to my children because I wasn’t functioning properly. I could have hurt my kids. What I mean is, my reaction time in an emergency situation would have been slow and I could have made a stupid mistake because I couldn’t think straight.

I also think I am incapable of asking for and/or accepting help. That is why I shot down every offer of Home Health Nursing that was made to me. I felt like I “should” be able to handle this on my own. That was my pride getting in the way of my common sense. I told myself things like, “I’m just a stay-at-home mom after all. It’s not like I have anything else to do, right?” It took Jacob’s Pulmonologist telling me that I was putting my son’s health at risk to make me sit down and reassess what I was doing. I cried after he said that to me, but you know what? I needed to hear that. I needed the tough love/reality check. I don’t want Jacob’s doctors to be my friends, I want them to be honest with me and to tell me what I need to know so that I can take care of my son properly. I also need to be held accountable when I am not doing what I am supposed to be doing. Too many people pity me and want to “cut me slack” or make excuses for me because of my “situation,” but a doctor should never do that, and I am glad that Jacob’s didn’t.

Starting Home Health Nursing services for Jacob was probably one of the best decisions I have ever made. Don’t get me wrong, it was a hard adjustment at first, but the perks of having a second set of hands, ears and eyes around far outweighed any small inconveniences of having a stranger in my home. For instance, being able to take a shower without worrying if my son was choking or aspirating on his g-tube feeds really settled my nerves. Also, being able to run an errand without worrying about my son’s health literally caused me to start bawling in the parking lot one day because knowing that Jacob was safe without me by his side was such a huge relief that the realization that I wasn’t necessary for his continued survival made me come undone. You cannot put a price on that kind of peace of mind, nor can I explain what a decadent luxury it is to simply go shopping without two kids in tow. The term, “quality of life” doctors kept harping about constantly started to take on depth and dimension when nurses stepped into the picture and made it so I had room to breathe again.

I realize now I may not always be able to meet my children’s needs. I may come up short. I may not be the best Mom 24/7. I acknowledge, accept and am OK with that fact. I am also thankful when other people like Jacob’s doctors or nurses step in and/or step up to do something great to make my kids’ lives better. This isn’t an easy life, but every act of kindness makes a big difference and leaves a lasting impression. In fact, I often thank God for giving my terminally ill son such amazing providers because if it wasn’t for them, he wouldn’t still be alive today.

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