The dark secrets of this special needs mom…
Parenting is strenuous, and all of us will face situations
in life that feel like they will destroy us. My emotional health has suffered
blows, my physical health took a back seat, and my spiritual snow globe life
was shaken upside down. People love to feel good and hate to sit with the
“bad.” They love to hear how your disabled kid has changed you for the better
or made the world a better place. But once you gain the courage to share
vulnerable thoughts, you’re scolded for not being thankful. Then these thoughts
go back into your little black secret box to never be shared again. Well, I’m
telling you, you are not alone. This may not be you, and I appreciate you for
not judging in some of my lowest moments. Wherever you sit, I can only hope you
are determined to finish this read.
I started running more this year and each time I make it up
the hill, I am met with a beautiful mountain scenery. In my head I could hear,
“what if I just keep going, keep running towards the mountain. Don’t go back
home and live in this free feeling that never wants to end. What could my
family’s life look like without me?”
I went into this new role as a special needs mom 6 years ago
with good intentions. What I did not anticipate is the amount of mental power
it requires to construct a creative softer way to inform others of what our
daily struggles entail. It’s important to me to unveil my truest feelings for
connection, while simultaneously sharing for awareness and change. If all someone
sees on my social media are joyful moments for the week, then that is true. We
recognize joy in the midst of storms. I am mindful of inspirational porn though, and not objectifying my daughter to non-disabled people to feel inspired
because of her life circumstance. There is absolutely nothing wrong with appreciating
positive statistics, such as:
Olivia had an up to 20% chance of not surviving her first
week of life due to the severe HIE diagnosis. She is now currently 6yrs old.
Olivia had a less than 40% survival rate on ECMO in July of
2022.
There was an 8-10% risk of Olivia having a stroke on ECMO.
That was not her case, and the entire process was in her favor.
When it becomes offensive is when disabled people are
reduced to an object of inspiration, rather than a human being merely living. She
was not set here on Earth to inspire or teach anyone anything. She is not the
gateway between Heaven and Earth. Her existence is simply enough, and she is
simply enough. If all someone recognizes on my social media for the week are
hardships, then that is true too. Hardships can shine while having a grateful
heart. There are many odds that my daughter has not defied. That also does not
define who she is or her purpose. We truly hope she does not become just
another number as the life expectancy for individuals with LGS is approximately
5%, with an overall mortality rate of about 24 times higher than the general
population. There are great STATS, and then there’s STATS you wish you never
heard of when living with a disabled and rare child. Those are things we have
to sit with on a daily basis.
I’m more than aware
that not everyone will understand and some choose not to understand. I know no
one will love my daughter how I love her. But that will never stop this special
needs mamas heart from yearning, begging, and pleading for understanding and
change in this world that was not made for disabled families like mine. This life
will create jagged edges and weariness to the point of your soul bleeding
black. They say it’s not for the weak or faint hearted, but there’s no other
option but to put one step in front of the other in a forward motion. These
concepts deserve to be brought to light and our fears and feelings validated.
Change starts with us and snowballs into a ripple effect. Can I count on you?
