Today I hold my baby because another mom cannot hold hers.
Nine months into this ride – this roller coaster I call Down
syndrome – I have realized that I love my son more than life itself. I can only assume that this love comes from
the extra blankets of protection I wrap around him, the extra time and energy he
needs, and of course, the little personality traits that come from having an
extra chromosome. In my experience,
babies with Down syndrome are angelic.
Every last one of them.
There are days when I hold my son just because that love is
so intense, but then there are days when I hold him because another mom has
lost the physical being that encompasses this love. Today is one of those days.
The Down syndrome community lost a member today. A baby boy only 12 days older than my son
earned his wings and is no longer in his mom’s arms. My mind and heart are heavy. I feel the weight of the disability,
congenital heart disease and the hard and desperate times that can accompany
both. I feel the weight of not taking
life for granted and being so incredibly thankful that my son’s heart defect is
not significant. On days like today I do
not care when he’ll walk because damn it, he is alive.
But mostly I think I feel the weight that this mom - whom
I’ve never met - feels. Her pain is in
the pit of my stomach and in the center of my heart and mind.
Children with Down syndrome are still relatively uncommon. Those of us who have one know the incredible
and unique gift they are to the world.
These children will change how people view the world and what they value
in the world. They will make every life
they touch better for reasons that are far too many to explain. Yet too many of our babies are lost to
abortion and complications in the womb, so we cannot possibly fathom the loss
of another. Not a single one. That intense and indescribable love is
tearing a hole in one momma’s heart that is big enough for the whole community
to feel. A loss for her is also a loss
for us.
Mothers of children with Down syndrome band together and
stick together – we are a force to be reckoned with. We live in online communities where we answer
each other’s questions night and day and we raise each other up around the
clock. We constantly share resources,
give advice, and lend support and a helping hand. When one mom is struggling and feeling
negative, there are twenty moms who are positive. When one mom is hurting, EVERY mom is hurting.
We mommas go through a lot.
The extra appointments that are oftentimes equivalent to an emotional
septic tank; the unanticipated health concerns that only a specialist two hours
away could address; the physical, occupational and speech therapies that tire
you and your baby to the core. We can
never reconcile the guilt of not engaging them constantly or heaven forbid,
spending time by ourselves. Finally, and
for me the hardest, we will never stop anticipating the sadness we will take on
when someone decides not to be our child’s friend or exclude them from
activities. True, mothers of typical
babies can have the same concerns, but for us the moments are hardly fleeting.
We are tired. We are
tired of advocating, we are tired of repeating, “People first language please,”
and “Stop saying ‘retarded’.” We are tired
of the struggles and most of all, we are tired of feeling alone. When we retreat to our phones, we know
someone is there, someone understands, and someone cares. That is our virtual community, and for a lot
of moms of babies with Down syndrome, their easiest and maybe ONLY refuge.
So, please allow me to mourn with my online community. That is often all I have. Do not judge me for turning to other moms I
have never met when they are often the only ones available who have truly
walked a day in my shoes. These moms are
strong, they are courageous and they are proud EVEN when they are tired. And when one hurts, we band together, hurt
together and heal together. And that is
what I call community.
Photo credit: http://www.erikaleitch.com/
Photo credit: http://www.erikaleitch.com/