Yesterday was my niece Emerson’s 5th birthday and today we will celebrate princess style. Emerson made her arrival as a beautiful, much loved, perfect little girl, but her little life hasn’t been all fairy tale goodness. As she grew over that first year it became clear that something just wasn’t right with her physical development. After visits to doctors her parents got some heartbreaking news. Emerson was diagnosed with Spinal Muscular Atrophy, which is a progressive genetic disease that leaves her with very little muscle. She can’t crawl, stand, or walk. She needs assistance to roll over in bed. She has the daintiest sneeze you’ve ever heard.
It turned the lives of her parents upside down. This isn’t the future they had planned for. But Emerson is still very much the child they dreamed of. She is every bit a typical five year old girl. She likes princesses, cartoons, and dolls. She is feisty, smart, and smiley. She loves school. She is shy around grown ups. She adores her Grandpa.
It would be so easy to get hung up on asking why this happened. Why did two people meet on a blind date, get married, and both happen to carry the SMA gene? Why isn’t there a cure? How could God let this happen? Those are big questions and don’t come with easy answers, perhaps no answers all. To save my sanity, I’ve chosen to focus on the positive.
On the surface it seems so random. But if I look closer there are lessons to be learned. I don’t know if in the grand scheme of things if bad things just happen in our world or if everything – even the really yucky stuff happens for a reason. I’m just not certain. What I do know is that Emerson’s parents have risen to meet the challenge. Perhaps they were chosen for this role because they were strong enough to make a difference. Not just for Emerson, but for all kids who suffer from SMA, as they immediately began raising awareness of the disease and funds for a cure.
When our family was awaiting the diagnosis there was fear and uncertainty. I felt a desperate need for hope and I knew I needed to rely on faith to make sense of it all. That need motivated me to attend a new church. In the years since we’ve continued to regularly attend and it has been so good for our family. While I’m certain we would’ve found our way there eventually, I’m glad it happened when it did.
I’m appreciative for what this has taught our son. Max has learned acceptance, tolerance, and patience while interacting with his cousin. He has shown a gentleness that is incredibly sweet. The two of them together make for a dynamic duo – they create schemes and whisper secrets that only little ears can hear. This experience, I hope will make him more compassionate toward all people. He now knows that although abilities may differ, friendship can still be shared.
Emerson has put so many things into perspective. Health and time are never to be taken for granted. Despite the differences in circumstance there are so many commonalities. While her parents spend their evenings at therapy appointments rather than sporting events – there are victories to be celebrated. While we cringe a bit as Max cruises our street on his bike, they are cautiously turning up the speed on her power chair – there is independence to be given.
Of course I wish my niece was healthy – I deeply wish that she were able to twirl her skirts and wear out the bottoms of her sparkly tennis shoes, but I am truly grateful for the lessons she has taught us.
Happy Birthday Princess.