Whoa, hold up. Settle down. This isn’t some sort of abortion or adoption confession. Just so you know.
I seem to be a minority among the childfree people I’ve met in that I adore babies. (I just can’t identify with kids once they become mobile and verbal haha.) I am nurturing and sometimes get those ooey gooey maternal feelings that can make come CFers want to retch. You know what I mean.😉
The child I didn’t have… This is the child who got the best of my maternal instincts when they were at their peak (which happened in my teens). This is the only child I would have ever braved motherhood for. The love of my life, the apple of my eye, all that gag me with a spoon sentimental type stuff. The child I didn’t have is my little brother.
I was 12 when he was born, so I was old enough to help care for him in many ways, babysit when my parents had to run out to the store or whatever, change diapers, all that good stuff. We developed a close bond, especially as he got a little bit older and started talking. Kids in general make me uncomfortable and I just can’t relate to them, but my brother was different. We were a lot alike personality-wise, and he was a smart kid from the start. From an early age, I remember having great conversations with him, almost like he was a tiny adult, except he had the infectious fascination and sense of wonder that so many kids have.
My little brother went through a phase, before he understood what marriage really was, where he would say he was going to marry me some day. It made my heart just ache with love. I thought it was the cutest thing. In his mind, when you loved someone a lot, you married them. Simple!
I’ve always seemed older than my age, so people occasionally assumed I was his mother if I had him perched on my hip and our parents weren’t close by. I balked at the idea of being a mother, especially at thirteen or even sixteen, but at the same time I thought if he could be my child, if my child could be just like him, I would welcome motherhood with open arms. But obviously there’s no way to know what your child will be like.
While I was falling in love with my little brother as though he were my own child, our family also experienced some difficult things. My little brother was diagnosed with Spinal Muscular Atrophy, something we’d never heard of before. There was no visible family history of it, but both parents must be a carrier of the gene for a child to have it. To give you a general idea of SMA, this is from the Families of SMA website:
Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common “rare disorder”: approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.
My little brother was just on the verge of walking before he was diagnosed. It was a milestone we were all excited to see. It was a milestone we never saw. At least not in the usual way. He was fitted with leg braces and had a walker and he could take a few steps that way, but his mobility steadily declined. My parents treated him as normally as possible, even as his strength and muscle control diminished. We had a special bike that he could ride with help for a period of time. We had another piece of equipment (I can’t remember the name of it now) that supported him in a standing position and had a tray so he could do activities or watch TV or whatever. He could still crawl and support himself on hands and knees for a while, until he got bigger. We pushed him in a manual wheelchair until he got too big and old enough that he needed to be able to get himself around, and then he switched to a power chair.
Because he was more dependent on us as a result of the physical disability, I think that strengthened our bond even more. Whether it was taking him out in the pool or adjusting his sitting position while he was playing with his toys, I was happy to hang out with my little brother, and I actually liked feeling needed and appreciated that way. Of course there were moments when sadness took over. Even though my brother is happy and smart, does well in school, has friends and interests and hobbies, I still have those moments of fear and sadness.
He’s had two spinal fusions. He uses a CPAP machine at night for his sleep apnea. When he gets sick, something that wouldn’t be too serious for you or I affects his immune system more strongly. He’s been hospitalized several times with pneumonia.
It’s a selfish sorrow, of course. I wonder what the future holds for him, and I fear what it will do to me emotionally to see the little boy I love so much struggle.
At the same time, that little boy impresses me so much every day. SMA has no effect on cognitive ability, and many people with SMA are actually extremely bright. I have fond memories of playing Zelda games with him when he was much littler and I had to read all the text to him until he could read well enough on his own. When I went away to college, he sent me e-cards using my parents email, wrote me notes, sent Valentine’s Day cards, and even sent me a piece of ceramic art he made in school. It didn’t matter how many boxes of pop tarts my parents sent, if there was a note or something from my little brother in there, that alone made my day. I have this picture of him in a middle school home economics class, using a sewing machine of all things. He held the foot pedal under his chin and controlled the machine that way. He played the baritone in band for a few years, before his second spinal fusion. He had to improvise with certain fingerings to compensate for weakness in one of his fingers, but he enjoyed playing and was accepted as a member of the All-Shore band. He has a dry sense of humor that I love, and we share an interest in a lot of the same geeky TV shows, like Doctor Who. He is an amazing kid.
I still feel that if I could somehow guarantee my child would be just like him, I’d do it. At the same time, I feel like I’ve experienced so much of both the joys and the challenges of having a child just by being his big sister. My maternal instincts were satisfied. And I just know there is no other child – not even one that I pushed out of my own womb – that could ever come close to matching the bond and the love I have for my little brother.
Why am I telling you all this right now? Because this is the last day of SMA Awareness month, for one. And two, because it’s also my not-so-little brother’s birthday. He’s 17 and just started his senior year of high school. He continues to make me proud and I continue to love him to bits and pieces. He’s all I could ever ask for in a child I didn’t have.