In the hours following my son’s birth we knew something was different. When all the other babies were cozy and asleep in their swaddles, ours was crying, flailing and visibly uncomfortable. I remember my husband coming to my hospital bedside amused that the only way the baby would stop screaming was if he was completely upright. We didn’t know it yet, but keeping him upright would become the center of our world for the next three years.
In the weeks and months that followed, the vomiting started. He vomited constantly, and we joked that if you looked at him the wrong way he would barf on you. He was diagnosed with GERD. But when the arching, body contortions, screaming and shaking started we knew something more was going on. He would soon be diagnosed with Sandifer’s Syndrome, a rare neurological response to GERD that he would outgrow. He did not outgrow it, much to the puzzlement of the specialists.
After my second son was born, we were so relieved when he did not have GERD. But then, when he was about five months old we noticed the shaking and arching starting and we knew something more was going on. It Took four years and nine specialists to finally be given the diagnosis of Dystonia. It turns out, Dystonia is a rare neurological movement disorder. It causes twisting and contractions of any voluntary muscle in the body. It can be anywhere from painless and annoying to excruciatingly painful and debilitating, depending on the day and the muscle in question.
With the definition and description of Dystonia we soon realize that it was also the explanation for my husband’s constant discomfort, pain and inability to sleep.
So, this is my story. I am the only member of my household not inflicted with this neurological condition. This is my journey through all the joys and highs of motherhood, and all the agony of watching everybody that you love most in life hurt. It’s a bit of a bumpy ride, but it’s a great ride, and one I wouldn’t change for the world!