It’s been more than 15 months since Andy passed away due to aspiration pneumonia caused by spinal muscular atrophy (SMA). On most days, I feel like I’m getting better at coping with the life he left behind. Thanks in large part to the birth of Andy’s little sister Lucy, I’m crying less and smiling more. I’m more successfully juggling my day-to-day responsibilities. I’m trying my hardest to be a good wife, mother, daughter and friend.
But, right when I start to feel like I might be healing, I hear a song I used to sing to him, see a certain one of his toys, notice a date on the calendar, or smell a familiar scent around the house…and I’m transported again to that horrible hospital room, reliving the day that I lost him. Thinking about the times he choked and turned blue. Thinking about the helplessness I felt because I couldn’t save him from this disease. Thinking about his lifeless body in my arms. Thinking about the horror of having to bury my child. Sucker-punched and bent over in pain, I suddenly can’t stop the tears.
It’s the little things that get me every time.
So I sit in his room, rocking in the same chair in which I soothed him to sleep, looking at his pictures, wrapping his blanket around me, and remembering. Wondering if the pain will ever lessen. Wondering how often my heart can break. Wondering if I’ll ever be whole again and if Lucy will suffer because she never will have all of me. I’m just too broken.
I try to focus on the little things. The way that Lucy kicks and pulls. How her chest expands when she breathes. How fast and efficiently she can drink a bottle. The first time she lifted her head when she was on her stomach. How loudly she cries. The way that she can sit in her Bumbo chair, unassisted. How, at just 9 weeks, she’s trying to roll over. The way she soothes herself with one hand in her mouth and the other in her hair. These are the things that most people with a new baby take for granted. But, SMA changed that for me. These are the things I watch for, the things that keep me going…little by little, day by day.
SMA didn’t just take Andy from us. It redefined our lives. It continues to impact us every day. And, because Lucy is carrier of the mutated gene that causes the disease, it will follow us into the future.
To say that I hate SMA is a broad understatement. I hate that I will never have a picture of my entire family. I hate that Lucy will only know her brother from pictures and stories. I hate that I will be continually blindsided by grief that never really fades. But, I don’t want to be consumed by hate.
So, once again, I turn to the little things. I vote online in contests that raise awareness for SMA and funds for its cure. I attend SMA-related events and connect with other families affected by the disease. I speak to groups about how the disease impacted us and how critical carrier testing is, and, more importantly, I tell Lucy how brave her brother was and how we have to continue his fight. I do what I can to make a difference.
But, I can’t stop his favorite song from coming on the radio. I can’t sidestep all of the little landmines that I encounter each day. Despite the pain, I can’t make the memories go away, because they are all I have left of him. And, no matter how hard I wish otherwise, I can’t change that he’s gone.