Celebrating my 36th birthday culminated in a plethora of emotions. In one sense, it feels surreal. I’ve survived 36 years of my life living with a rare disease, spinal muscular atrophy (SMA). In another sense, I know I’m fortunate to live in an era when medical advances in the treatment of rare diseases are accelerating. In fact, it’s advanced to the point where premature death is less of a threat than what this disease once implied.
Treatments are here and improving each day. They have improved the life expectancy of those suffering from SMA, and no material gifts can have a greater value.
However, these treatments can’t restore time. Since I was a child, I’ve dreamed about being a mom. It’s a desire that has never left my spirit. But when I was 25, the medical professionals overseeing my care said it would be dangerous in my situation to become pregnant.
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Carrying a child with the severity of my scoliosis would keep me bed-ridden from early on in pregnancy. In addition, I don’t weigh much, which would negatively impact both myself and the baby nutritionally. There were too many odds against the situation. I couldn’t rationalize going ahead with it.
Read more about experimental therapies for SMA
Now that I’m 36 and no longer married, the dream of motherhood appears more unlikely. I’ll never give up hope, though. Being a mother doesn’t have to come from blood. Showing any child love and care is what earns the title of a good mom. Adoption is always a possibility if that’s God’s will for me. I’ll never rule that option out, in addition to fostering. There are so many children who need homes, and if I ever am in a situation where I can support a child, I will.
However, as a woman with SMA, the part I struggle with is accepting I have been cheated of the opportunity to carry a life inside me. There is no more unique bond than a mother and her child. They’re so deeply connected. And with each stage of pregnancy, there are milestones. I’ve always imagined hearing the first heartbeat and feeling the first kick in my belly. It truly is a miracle and a beautiful gift that oftentimes gets taken for granted.
Nevertheless, no matter how excellent these treatments become, they cannot restore time to my once younger, healthier body, making pregnancy a definite possibility. It’s something I’m learning how to cope with every day.
I am aware I’m not alone in my dreams of becoming a paternal mother. There are many women who cannot conceive for a variety of reasons, and my heart goes out to them. No matter how much you learn to cope and accept it, the desire can never be erased from the heart.
On a more positive note, however, God graced me with many nieces and nephews. They’ve allowed me to have little glimpses into the feeling of motherhood. As I’ve stated above, it doesn’t take a birth to become eligible for the “mom” title. It takes a passion and willingness to love and care for any child.
