I'm listening to the rain hit against my broken window panes and I await nervously a window well that has rusted through to fill up with water. A reminder that I now lack any financial resources to make any reasonable home repairs because I have a severely disabled child that needs more help than I can fund out of pocket. A feeling that things are crumbling around you and you sit just powerless.
The thunder grows closer and prompts me to acknowledge all the things one cannot see, but that still
have endless ramifications.
I can feel the earth shaking and rumbling. The clouds growing angrier
and swelling with water - perhaps a small consolation that the earth
understands these intense feelings that I manage on a daily basis.
I haven't written a personal blog in a while - almost a month to the
day, actually. Unusual for me, as I always have something to say, but I
remain very aware that I can be pulled to say 'too much' especially in
moments of pain, anger and sadness when
I write. Lately I've just been emotionally drained by all of Noah's
continual Medicaid and CCB denials. I continue to win and reverse these
denials before an Administrative Law Judge and every single time the
State finds the need to file something called
an Exception to Initial Decision and reverse the Judge's ruling. I'm
still in utter disbelief that they are permitted to essentially
over-rule what a Judge says. It's a power they shouldn't have, but
do. I've pounded every avenue I can think of to stop
this madness; news media, legislators, local government
representatives, advocacy groups, disability law attorneys - you name it
I've tried it. And while my name and Noah's story is quite out there,
the general feedback is while we feel for you our hands
are tied. Noah has become a casualty of a broken system. A system
that is failing on him on so many levels.
I hear the statement a lot: I Don't Know How You Do It.
The truth is, I don't know how I do it, either.
There is so much in that statement of I Don't Know How You Do It,
that really feels like it minimizes all that I do go through in a day.
While you think you're building me up and making me feel like a
superhero mom with a simple phrase - it still feels like
you're doing nothing more than thanking your lucky stars that you
aren't me or could never imagine yourself in my place. It puts me on a
pedestal like I deserve a crown for enduring such challenges and
hardship. I'm so ordinary - what happened to me could
happen to any mother. While certainly Noah has transformed me into
someone I never dreamed I'd have to become or be, I'm a better person
because of him. Such lessons that God probably would not have been able
to show me any other way. Lessons I wish everyone
could learn, feel and understand. The world would be such a kinder and
more loving place if only you could feel what I feel and experience.
Cliche' it remains that good old statement if only you could walk a mile
in my shoes...
I've been sulking perhaps a touch over continual special needs defeats.
Therapy challenges, denials left and right literally for everything
Noah needs, me lacking the ability to be successful with fundraisers,
the realization that there are no more foundations really left to hit up
for help,DME's that really could care less
about your child's needs, physicians that think it's a breeze to go get
an xray across town or give you advice to let your child ride out a 105
degree fever and that an entire body rash isn't of any concern...
knowing that I owe on our bank's line of credit which
we continually borrow from month to month just to try to get by for
Noah - the endless cycle of damn this just all sucks. And that
statement "I don't know how you do it." looming in the back of my mind
each and every time I hear it.
And it's not just a phrase designed for special needs parents.
You'll hear it for the single parenting mom juggling it all without
help; you'll hear it over the college student who is working full time
and simultaneously coping with the loss of both parents;
you'll hear it about the couple that is on their eleventh miscarriage
but keeps trying - people use this phrase for everything in the
"moment." It brings absolutely no consolation to the person on the
receiving end of this statement. It doesn't make us magically
feel better. It most certainly doesn't make us feel stronger. If
anything it's a reminder of how truly alone we are, as you're simply
sitting on the sidelines wondering "how we do it." But I bet all this
wondering doesn't keep you up late at night like
it does us. And you wondering doesn't ever inspire you to say maybe
she can't do it all - how can I help her?
I wonder too. I wonder how I'm able to get up and put one foot
before the other and keep going, how my drop tired self finds the energy
to fight endless battles, write legal pleadings and attend court
hearings, respond to countless emails, coordinate continual
appointments, juggle all of Noah's therapies and appointments, not
shaft or leave his little brother's needs behind, be a great wife,
amazing partner, provide for my family's needs; cook, clean, do laundry;
tend to the yard, homeschool two beautifully unique
and smart boys, trouble shoot all of the family's problems, find
solutions and remedies to anything that is wrong, and find time to help
other's in need. So yeah, I don't know how I do it either..... but, I
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.