Andy was seven weeks old when we stopped denying that something was terribly wrong with him. When we stopped explaining away the belly breathing and why he seemed so floppy. When we rushed him to the pediatrician and our worst fears were confirmed. When the nightmare of SMA really began.
Will is seven weeks old today. He looks like his older brother. Same bright blue eyes, same kissable cheeks, same rosebud lips. But, their differences are so distinct that they sometimes startle me. Will already lifts up his head, bracing his chubby arms against me and looking around. He pulls my hair and pushes his feet into my lap, as if to stand. Andy held up his head only once, on the day he was born and was at his strongest. Will hungrily drinks a full bottle in minutes, when it took Andy hours. Will cries lustily, where Andy’s cry was as soft as a kitten mewing.
It’s almost as if Andy and Will are different sides of the same coin. Two different versions of what could be. Two different kinds of strength. I look at Will, marveling at all he can do and remembering all Andy could not. I think about Andy’s sheer will and spirit and hope to find it reflected in his little brother’s eyes. And, I feel so many mixed emotions – love, pride, longing, joy, sorrow, and even guilt.
I missed so much in Andy’s early days. Having wanted him so badly I couldn’t see – or perhaps I didn’t want to face – the early signs that all was far from perfect. And, being a new mother, I really didn’t know what to expect. I didn’t know how strong a newborn should be. I certainly didn’t know about SMA. Milestones weren’t reached because he was too big or too lazy, but not because he was sick – that was inconceivable to me. The denial ran so very deep. Andy was my first baby, and there was so much I didn’t know.
I didn’t know. Three words that haunt me still.
But, things are different now. It’s a different time of our lives. I’m a different person and certainly a more seasoned mother. Will is a different boy. Yet, I have to remind myself every day that this time with him actually will be different. That I can’t live in fear of the unknown. That the other shoe won’t drop. That I won’t lose this baby too.
They say, “When you know better, you do better.” I try to live by that credo. I remember our past experiences and have learned from them. I am more thoughtful and take far less for granted. I try to recognize the small wonders of every moment with my babies. The tiny miracles of everyday life. The head lifts. The hair pulls. The kicks and the coos. The little things that in the chaos of a day seem so insignificant, but – when reflected back upon – are treasured.
And, today, there will be no panicked rush to the hospital for us. There will be no triage, no ICU. I will not cower in a corner as the doctors discuss my baby’s fate, desperately praying that they are wrong and that he will be fine. No one will tell me how sorry they are, that there is nothing they can do. My heart won’t be broken again. That nightmare is over. This is just another Monday. This is not the beginning of the end.
It’s just the beginning.
–Audra Perry Butler