“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
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
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!