No matter how you try, inevitably you will look backwards when you look at your life with a child has special needs.
are some really difficult parts to looking in the past. Some parts of
exceptionally haunting and they never go away. I can still find myself
up in the middle of the night listening to Noah breathing and I can be
transported back to the NICU listening to those beeps and watching his
oxygen saturation and heart monitor, my stomach sinking with that part
that made you feel like you could vomit and pass out each time you'd
hear an alarm sound. Never knowing if this was the last breath Noah
would take. The smells are still there too. That darn sterile smell
combined with new baby blanket scent, and I can still taste the tears
that I cried. The salt and the pain etched in my soul that will never
ever heal properly. I've accepted to some degree I will always be the
walking wounded. It is impossible to live through that kind of living
nightmare in your life and not walk out of it a completely altered
And at 1am after you've relived those memories that
linger, You start evaluate how your life was before and after living
through that moment in time.
Sometimes I think about the person
that I was before Noah. I started out as this super quiet, easy going
person. Who hated conflict. I mean hated it. I'd avoid it any cost
and would rather walk away from something that confront anything that
could start tension. I'd never debate how I felt about any given
topic, I kept my opinions and feelings much to myself. You certainly
would have never known where I stood on any given topic as I was
selective with personal disclosure. I never found anything worth a
battle or a challenge of any kind.
Then you look at today...
where now I have gained that reputation as "That Mom." You
know... "That Mom," that every equipment vendor shutters at the name
of, that some therapists roll their eyes at, that suppliers and vendors
dread because they know I'll call them out for tardiness, that
caseworkers don't want to deal with because I challenge them on the
"rules" that they make up along the way. The mom that no one really
wants to deal with. Because you aren't afraid to challenge them on everything if need be.
How did I get that way? How did I go from the introvert to the extrovert?
started out initially from people pushing my special needs buttons one
too many times. You can only lie to a parent so many times, you can
only find so many ways of avoiding helping their child so many times,
you can only fail to do you job one too many times before "That Mom" is
born. Sometimes being a loud voice is the only thing that will get
anyone's attention. And if that means you have to step on some toes and
deal with supervisors and managers or even government agencies or
politicians... then you do it. I can guarantee you that no one is
losing sleep over the fact that they aren't helping your child. It is
just a job to them. To you this is about your child's life. This isn't
about how to Win Friends and Influence People. Although as a
side note that book authored by Dale Carnagie has good value. However,
I'm certainly really not all that concerned with arousing resentment or
making people like me along the way, and when dealing with the
government system specifically I am convinced there is no way to win
them to my way of thinking. My focus is on making sure Noah is taken
care of and that others are doing the best job the they can to assist
him, and in the end if that doesn't make me very popular, then so be
Trust me, I'm not the only one of my kind out there. There are lots of us out there.
my "That Mom" reputation should not be confused with being a difficult
person to handle or get along with or even being a genuinely likeable
person. It's simply the mom that calls you out the balderdash you feed
her. A special needs mother's biggest pet peeve is when you are
working against her, and not for the benefit of her child. Without
question it will make us put on our combat gear each and every time. We
are hardly hesitant to wage war on those not doing their jobs or are
standing in our way. If you're doing your job, and doing it well you'll
never have to worry about us barking up your tree.
wear that title as a beautiful badge. It means that I'm doing my job
well as a special needs parent. I'm proud that I am "That Mom."
Because it means that I will insist that you do right by my child and do
your job as a professional working with those who have disabilities.
Although I'll admit I am still nursing my sadness from losing the fight
for a piece of equipment that would have really made a tremendous
difference in Noah's life. I know that I must carry on and be "That Mom."
(If you feel led to help Noah on his quest to crawl please feel free to visit his online fundraiser here): http://www.youcaring.com/medical-fundraiser/help-noah-with-a-chance-to-crawl-/202638
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.