Yesterday I had the rare treat of getting to go to lunch with two
other special needs moms. We had a long lunch spending a couple hours
discussing all topics relating to our children - comparing notes about
therapies, Medicaid denials, nursing, respite, diets, medications,
doctors... lots of topics that most parents don't have to think twice
about. As we spent the afternoon together having lunch and walking the
local mall we discussed how unpopular we are as special needs parents
with government agencies, public school systems, doctors that don't
listen, nurses that steal drugs, respite care providers gone bad,
medicaid denials gone both good and bad and the fight that follows,
therapists that road block you from pursuing avenues that would improve
your child's quality of life. And the most well seasoned mom out of the
three of us, said the most powerful thing today. Turn your tears into
re-directed energy. Think about how you can make that person or group
that is causing you to cry to have a very bad day. Sweet revenge in a
sense with comes finding a way around them. So what you tell me no... I
will find someone that says yes... that says yes to helping my child
with open arms. In our time together I realized that the three of us in
our own individual ways are some of the strongest, and most powerful
advocates you could ever begin to imagine. We have fierce drives and
incredible profound love, that makes us so powerful even on the hardest
of days. We are like the energizer bunny... we keep going and going and
going for our children. You can try to knock us down, but we'll get
up each and every time and figure out how to advocate for the needs of
our children. Inevitably I feel sorry for those who think they'll stand
in our way. Eventually you will lose. The odds are not in your
favor. We have a fire like no other. God made us fighters to go the
distance.
Yesterday I drafted the strongest appeals letter I
could write for Noah's most recent Medicaid denial, a pediatric crawling
device - deemed "Not a medical necessity" even after being recommended
by a physician and a therapist. Now I wait for my telephone hearing
before and Administrative Judge to battle it out and attempt to convince
them to overturn their decision and fund it. And this of course won't
be the last denial I'll have to fight. Sadly, it is common - more
common that it should be. I think Medicaid and other agencies are
rather relying on the hope that we'll give up, accept the denial, put
our tail between our legs and go away. But we don't know how to turn
our backs on helping our children. So we become soldiers of one.
Battling for every need that they have. Exhausting at times, but we
keep marching forward.
We got a very beautiful invitation for
Thanksgiving this year. We received a flyer in the mail, inviting
special needs family in our community to a restaurant for Thanksgiving
dinner, for no charge and no tip. And they were also inviting 12 of
your family members to attend with you. Yes doesn't it sound unreal?
It did to me too. I think must have read it at least five times, then
had to sit down and read it a couple more! I've never seen or heard
anything like it before. And what a gift. You can only begin to
imagine how challenging the holidays can be with a child who has special
needs. I loved cooking Thanksgiving dinners and had done so pretty
much every year since my parents divorced when I was 19. I remember
trying to cook my first Thanksgiving dinner after Noah's birth - it was
so difficult. Noah was tremendously distraught in his early years, he
screamed, cried almost twenty-four hours a day. I bounced him endlessly
on exercise balls, turned up every stereo to try to find something
that would soothe him even for 30 seconds... I cried more tears that
first year than I had done in my whole life. I was so lost, so tired,
so beside myself with grief and trying to accept my new life in the role
of a special needs mom. Thanksgiving to me was a way that I could
prove that I was able to juggle both a very challenged child and
cooking. Although many hands were offered for help, I declined wanting
to conquer the goal - a turkey dinner with all the trimmings and me
serving my family around the table. I did it. But it was far from
easy, and looking back on it, not sure how I did it, and I wouldn't want
to try it again. It inevitably has grown easier since then, since Noah
is now older and able to self-soothe to a large degree. But it does
take extra work, that other households don't necessarily have to balance
while preparing a large meal. So this year, we decided to take up
this wonderful offer by Zolo Southwestern Grill and accept their
kindness and amazing offer to have them prepare our Thanksgiving dinner
this year. Noah and family will be dinning out. And I'm excited -
thrilled actually to be surrounded by other special needs families - we
are a group of people in the community that never fail to count our
blessings.
Love,
Noah's Miracle by
Stacy Warden is licensed under a
Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
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