August is SMA Awareness month. 1 in 40 people are carriers for this disease. 1 in every 10,000 births will result in a baby affected with SMA. SMA is the #1 genetic killer of infants. There is still no cure.
“What is it that you do?”
I recently found myself in a social scenario with a group of professional men and women who were all trying to get to know one another. The topic of occupations came around and when eyes landed on me, the inevitable question was asked. “What is it that you do?” And I blanked. “I’m just a mom,” I replied, immediately horrified at my response. You see, I have dreaded this question since I became a stay at home mom about 3 years ago. I was mentally reprimanding myself for such a flippant and dismissive answer about what has been the most important job in my entire life. And I haven’t been able to stop thinking about it since. Does that really even exist? A woman who is “just” a mom? I couldn’t shake the feeling of being inadequate in so many ways, even though I know I am completing some of my most important work. My journey over the last three years as a mom to a special needs child has had me, at times, questioning my identity and how I really define “what it is that I do.”
Fearing and accepting a terminal medical diagnosis
Three years ago, my 7-week old baby boy Graham was diagnosed with Spinal Muscular Atrophy (SMA) type 1. SMA is a neuromuscular disease that affects the motor nerve cells in the spinal cord. This causes extreme muscle weakness and eventually muscle wasting all over the body and impacts a person’s ability to walk, move, eat, and even breathe. For Graham, we were sent home with an expectation that our baby would likely not see his 2nd birthday because there was no cure for this horrible disease. Our world was turned upside down. How would we handle the loss of our precious son? How would our other two children deal with the life and death of their baby brother? How will we meet his very fragile medical needs? How can we make sure he is happy, and not suffering? This is not at ALL how our life was supposed to look with three children.
How life changes, ready or not
We grieved the loss of the life we had been expecting and then we decided it was time to fight. Our family adjusted to what we loosely refer to as the new normal. The change didn’t happen overnight, but we have learned to grow, adjust and adapt to life with a medically fragile child. Therapies, home nursing, hospital stays, respiratory treatments, medical equipment and monitors becoming our newest accessories. Lack of sleep, doctors and specialists, surgeries, illnesses, and the world’s largest supply of hand sanitizer. These things may sound tough to wrap your arms around but when it’s your child, you just do it. Part of this change we experienced was for me to give up a career that I had grown into and really loved. I walked away. I gave up several licenses that I had studied countless hours to earn. I gave up relationships, my salary, benefits and more. But I was 100% okay with the decision because at the time it was the only choice that made sense for us to cope with Graham’s care (and let’s face it, being able to spend more precious moments in time with all three of my children wasn’t exactly a hard concept for me to embrace). As our life morphed into our new normal, my husband and I learned pretty quickly that we need to take things one day at a time. We leaned heavily on the village of people that surround us and make life possible. Looking back over the last three years, we marvel at the strength and courage of our sweet little Graham. We celebrate “inchstones” as we watch his body very slowly respond to treatment, and he continues to grow stronger, rather than weaker.
So really, what is it that I do?
With all of that being said, I think it’s not uncommon for any special needs mom to feel the familiar tug of a loss of identity and fear of inadequacy. Life, as you know it, has forever changed with a diagnosis like SMA and, like it or not, so have you.
I’m growing into my new roles and reminding myself every day that, yes, I am a mom… and so much more.
I am a medical mom.
I am a follower of Jesus.
I am a wife.
I am Graham’s nurse and respiratory therapist.
I am an advocate.
I am my child’s voice.
I am a friend, sister, daughter.
I am an independent consultant for a company selling skincare.
I am a resource for newly diagnosed families.
I am a baker (this is my favorite form of therapy).
I am a force to be reckoned with when my child’s life is on the line.
I am a volunteer.
I am bedtime story reader, keeper of the schedule, and lunch packer extraordinaire.
While many days I still feel inadequate, I am learning that being a mom (and a special needs mom at that) deserves a certain level of grace. My journey as “just a mom” is really so much more than that. I’m discovering a true identity and uncovering new parts of myself along the way.
While our road with Graham is bumpy and challenging at times, I thank God every day for giving me these three sweet children to raise. I am especially thankful that I am not just defined by being a mom, but by all of the doors that have opened as a result of the path my life has taken. With each role I take on, I feel like God is helping me find my purpose, and is using my role of “mom” as the driving force behind it all.
Adrienne is a local mom of Westfield, IN for the last 11 years. She married her childhood best friend Nick in 2007 after graduating from Purdue University, and they now have three children Ben, Lucy, and Graham. Graham was born in 2015 and was diagnosed with Spinal Muscular Atrophy, type 1. Adrienne manages Graham’s care at home while connecting with other SMA and special needs families, and advocating for care for SMA children in the state of Indiana. If you would like to follow along with Graham’s story, go to his Facebook page Prayers for Graham.