Thursday, May 14, 2009

Thoughts of a mom

I got this off of SMA space and thought it was so cute, I just had to put it on here!Thoughts of a Mom:
Many of you I have never even met face to face, but I've searched you
out every day.
I've looked for you on the Internet, on playgrounds and in grocery
I've become an expert at identifying you.
You are well worn.
You are stronger than you ever wanted to be.
Your words ring experience, experience you culled with your very heart
and soul.
You are compassionate beyond the expectations of this world.
You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority.
A very elite sorority.
We are special.
Just like any other sorority, we were chosen to be members.
Some of us were invited to join immediately, some not for months or even
Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in
obstetrician's offices, in emergency rooms and during ultrasounds.
We were initiated with somber telephone calls, consultations,
evaluations, blood tests, x-rays, MRI films and heart surgeries.
All of us have one thing in common.
One day things were fine.
We were pregnant or we had just given birth or we were nursing our
newborn or we were playing with our toddler.
Yes, one minute everything was fine.
Then, whether it happened in an instant, as it often does, or over the
course of a few weeks or months, our entire lives changed.
Something wasn't quite right.
Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's
special needs.
Some of our children undergo chemotherapy.
Some need respirators and ventilators.
Some are unable to talk, some are unable to walk.
Some eat through feeding tubes.
Some live in a different world.
We do not discriminate against those mothers whose children's needs are
not as "special" as our child's.
We have mutual respect and empathy for all the women who walk in our
We are knowledgeable.
We have educated ourselves with whatever materials we could find.
We know "the" specialists in the field.
We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the"
We know "the" tests that need to be done, we know "the" degenerative and
progressive diseases and we hold our breath while our children are
tested for them.
Without formal education, we could become board certified in neurology,
endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what
our children need to survive and to flourish.
We have prevailed upon the State to include augmentative communication
devices in special education classes and mainstream schools for our
children with cerebral palsy.
We have labored to prove to insurance companies the medical necessity of
gait trainers and other adaptive equipment for our children with spinal
cord defects.
We have sued municipalities to have our children properly classified so
they could receive education and evaluation commensurate with their
We have learned to deal with the rest of the world, even if that means
walking away from it.
We have tolerated scorn in supermarkets during "tantrums" and gritted
our teeth while discipline was advocated by the person behind us on
line. We have tolerated inane suggestions and home remedies from
well-meaning strangers.
We have tolerated mothers of children without special needs complaining
about chicken pox and ear infections.
We have learned that many of our closest friends can't understand what
it's like to be in our sorority and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To
Holland" and Erma Bombeck's "The Special Mother."
We keep them by our bedside and read and reread them during our toughest
We have coped with holidays.
We have found ways to get our physically handicapped children to the
neighbors' front doors on Halloween and we have found ways to help our
deaf children form the words, "trick or treat."
We have accepted that our children with sensory dysfunction will never
wear velvet or lace on Christmas.
We have painted a canvas of lights and a blazing Yule log with our words
for our blind children.
We have pureed turkey on Thanksgiving.
We have bought white chocolate bunnies for Easter.
And all the while, we have tried to create a festive atmosphere for the
rest of our family.
We've gotten up every morning since our journey began wondering how we'd
make it through another day and gone to bed every evening not sure how
we did it.
We've mourned the fact that we never got to relax and sip red wine in
We've mourned the fact that our trip to Holland has required much more
baggage than we ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport without most of the
things we needed for the trip.
But we, sisters, we keep the faith always.
We never stop believing.
Our love for our special children and our belief in all that they will
achieve in life knows no bounds.
We dream of them scoring touchdowns and extra points and home runs.
We visualize them running sprints and marathons.
We dream of them planting vegetable seeds, riding horses and chopping
down trees.
We hear their angelic voices singing Christmas carols.
We see their palettes smeared with watercolors, and their fingers flying
over ivory keys in a concert hall.
We are amazed at the grace of their pirouettes.
We never, never stop believing in all they will accomplish as they pass
through this world.
But in the meantime, my sisters, the most important thing we do, is hold
tight to their little hands as together, we special mothers and our
special children, reach for the stars.
By Maureen K. Higgins


Devon said...

Tara, I LOVE this. LOVE LOVE LOVE it. I am, in fact, going to steal it and put it on MY blog. I hope you don't's just so beautiful and so perfectly expresses this journey.

Hugs from a sorority sister...

Whit, Lindsey, and Jonas said...

These poems are always so nice to hear.
That is a bunch of great news about Brynlee's visit with Swoboda...Jonas will be going in tomorrow. I wish we could see the great results that you guys see.
I'm also glad that you guys made it out to the SMA thing in Park City. You'll have to let us know when that Walk and Roll cool!!
Anyway, way to go Brynlee!