Re: Oprah (sorry it's kind of long)

[Guest guest]

Hello Everyone -

I actually sent an e-mail to Oprah before that particular show aired.

I thought it would be really insightful for her to have show on moms

who are not only handling the normal day to day stress of healthy

children, but also moms like us, who also have additional concerns

with our children. I also included a great letter I had downloaded.

from another website which talks about special needs moms. I will

copy it below.

Maybe if we all write to her, they will actually do a show on

families in our situation. I think it could be really inspirational

for her audience to see what it is like for parents like all of us.

.

Mom to Walter 5 w/cf and (3)

I'm a lurker here. My son, has a neurological problem but I

lurk here because he has some of the same challenges your children

encounter. I wrote this for all the special moms out there: To You,

My Sisters 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 stores. 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 years. 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 ungergo 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 shoes.

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 "

treatments. 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, pulmonology and

physchiatry.

We have taken on our insurance companies and school boards to get

what ourchildren 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 diagnosis.

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 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 hours.

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

Italy. 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