The reality show “Love is Blind” aired a conversation about
abortion between two engaged participants. The female participant explained to
her fiancé that “she would try again [get an abortion] if she found the unborn
child had a birth defect like Down Syndrome.” After her fiancé disagreed with
her stance she responded “I think its different for me. For me, if I knew that
I could try again and hope the second time it’s better, then I would go that
route, to be honest.” Later in the episode the issue was brought up to his
family. After her fiancé’s sister asked her to explain further, she responded
“I only believe that because of what I’ve seen. I specialized in Down
syndrome. I had kids that were medically
fragile, so they have all sorts of medical illnesses. And for me working with
so many children and the struggles that they went through and then seeing their
families break down.”
As a mother of a medically fragile child, hearing those
words felt like a punch in the gut. It saddens me to think there are so many
people in this world that still do not see the bright light children with
medical complexities or syndromes bring to this world. If I could have a conversation
with the participant this is what I would say:
There is no greater love than the love I have for my Jude.
Being his mother has caused me the most excruciating pain while simultaneously
creating the most beautiful, selfless love. That being said, motherhood is not
what I thought it would be. The appointments, paperwork, insurance and program denial letters and appeals, IEP meetings, hospitalizations, surgeries, illnesses, weekly infusions, maintaining g-tube feeds, safety
awareness challenges and lack of support have overwhelmed and pushed me to my
limits. In the darkest moments I have questioned my sanity, my abilities, and
also society at large. Those dark moments always cause me to reflect. I think
back on the moments and what I can always recall is a child who endures every
situation with grace and an unbelievable perspective. Despite the entire world
not being something he can “fit” in, he never gives up. He keeps going through
severe illnesses, diagnoses and every setback while always comforting me with his
arm around my shoulder. He keeps trying even though he will never be the best
or win an award, he’s just trying to achieve a skill that most people do not think twice about doing. He does it because he loves being with
his teachers, therapists, family, and being in his daily routine. Isn’t that
something we should all strive for? How
many of us can truly say we do what we do without some sort of award, paycheck
or praise surrounding it. Not too many.
It has been in these times of reflection and epiphanies that
I have found an unbelievable amount of strength and courage. Strength to
realize what I deserve and what I can do for this world. If it was not for
Jude, I would have never walked away from an unhealthy situation and married
someone who loves both Jude and me. I would never have had the confidence to
start my own small business, apply for a state council or start a blog. He
constantly reminds me to live and appreciate every moment, even the small ones.
Now I get to observe firsthand how his example radiates to others. His little
brothers sit with him while he gets a bolus feed, take off his shoes and braces
every day after school, and sing to him when he is sick in bed. It stops me in
my tracks. A three- and four-year-old displaying that type of awareness and
compassion is something our world so desperately needs and would have not
happened without Jude.
One of Jude and I’s favorite songs says “it’s better to feel
pain than nothing at all. The opposite of love is indifference.” Pain is
inevitable. You can’t avoid it. If
through that pain you can experience growth, strength, courage, compassion and
awareness then isn’t a life with disabilities and medical complexities
invaluable? Maybe we need to rewrite the narrative on disabilities. Let’s show
the world how beauty and pain can coexist and the lessons it provides can
change the world one person at a time!
