Happy Mother's Day

“I love you, Mom” is one of the many things that people who don’t live in our SMA world often times take for granted. It’s a very simple phrase, yet packs a powerful punch. It is something that I live daily to hear uttered from Veronica’s lips. Each night when I put her to bed I tell her that I love her and she says, “uh huh”. This is fine with me because that is what she is capable of saying. But my dream is that someday instead of her usual response she will say “I love you too”.

I don’t have any doubt about how much she does love me. It is evident in her eyes through her expression, by her smile when she looks at me, through her tiny hand when she grasps my finger or through her tears when I am not here. My heart just yearns to hear her say it and it is never as imperative as it is around Mother’s Day.

Raising a child with Type 1 SMA is not an easy task. It is essential for parents to wear many hats, some of which are very uncomfortable. None of us enjoy having to fight doctors, insurance companies, school districts and even our own families in our pursuit to do what we feel is best for our children. We don’t like getting stared at when we go out in public and like even less how such ignorant behavior must make our child feel. We don’t appreciate doctors who feel they have input on what makes a quality of life for our child. We all want our children to have the best, most happy and fulfilling life that they so richly deserve. And God help anyone who gets in our way of doing so. You learn to be tough, thick skinned and you no longer sweat the small stuff. So why should hearing the words “I love you, Mom” matter so much to someone who is so resilient?

Every day we all run a gauntlet of emotions. We are a small community, very supportive of one another, and we keep in touch on a regular basis with each other. We love one another’s children as if they were our own, even if we have never met them in person. We worry when a child has to have surgery, we send prayers when someone is coming down with a cold or in the hospital, and we lose a piece of our heart every time we learn of yet another child who has lost the battle with SMA. Each one of us knows that it could be happening to us at any given time. Sometimes that realization makes it difficult to get through the day. But we’re hardy and we’re strong; we brush ourselves off and keep on fighting.

Fighting is easy when you know our children. When looking for a definition for inspiration you need look no further than into the eyes of a child with SMA. Veronica manages to bring out the best in everyone who knows her, just by being her. She inspires my creativity and keeps my mind young. She reminds me everyday that we can overcome whatever obstacles are placed in our path. She loves life and all it has to offer, enjoying every new experience she encounters. She teaches us every day what it means to truly love another human being, all without speaking more than a few words. As a mother, that is everything one can hope for in a child, to inspire in such a way that the world is awe struck and blessed by their presence.

So I will hold onto my dream of someday hearing her say “I love you, Mom”. For now, I can take great pride in the realization that Veronica’s presence in our lives has significance beyond what we will ever understand in this world. I remain hallowed, humbled, and proud to be her mom.

Wishing you all a HAPPY MOTHER’S DAY!