Well, I have just been a ball of emotional mess lately that I don't expect anyone to understand. I simply don't understand it all myself. I some days feel like a bit of a freak and that I should be put away in some sort of facility or something.
All of this exciting house stuff is going on and it should be consuming alot of my mind space but it's not at the forefront believe it or not. It's mostly Raya. She's been really difficult lately and she gets so frustrated with herself. I don't need to go into details but you can trust me when I say it's extremely hard. It's mostly hard because her 'disability' isn't visual. She looks like your average 4 year old big-eyed girl. I often forget myself that she has bigger struggles than most. So, when we are out in public and she has an 'episode' it's horrible. I try and remain calm and pull her through. People stare and comment as they walk past. They think she's being a spoiled little brat throwing herself on the floor and flopping all around. They don't understand. I don't understand. I just LOVE her to bits and the future scares me. I hope I'm doing things right with her. I hope I'm not being to easy on her, or to tough on her. She had some blood work done last week and I got a call this week from her ped's office saying something showed up and so we have an appt on Monday to find out about whatver it is that they found. I know that the results don't change who she is. Whatever it is, she already has it. I pray that I will be strong and that whatever it is, it's something that Chris and I can handle and deal with and conquer together with Raya! She is such a little trooper with so much energy and love!
There is another topic that is consuming alot of my mind but that will have to wait for another day. I just tried writing about it but it wasn't coming out right. Perhaps it's a little to personal right now. Maybe another time...
To You, My Sisters
By Maureen K. Higgins
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, and physiatry.
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 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 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 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.
NOW!!