Infantile Spasms

Though I will not be delving into this story in this post, at 4 months old, I was diagnosed with infantile-spasms. The prospect of any sense of normalcy looked grim; even a speech therapist insisted that I would never “walk, talk, or learn like a normal person.” (Doesn’t that statement absolutely reek of ableism?)

Anyways, my parents were not happy with the lack of faith of that speech therapist. Before I say anything else, I would like to mention that if I never did walk or talk, I would have still been able to learn, and my parents would not have loved me any less. It’s just that they weren’t happy with how quickly she gave up. But at 3 years old, I said my first word, “banana” (or, more accurately, “ba-buh-ba”). Upon hearing this story for the first time, I was fixated on finding a tangible symbol for overcoming doubt.

I still have epilepsy, but I can certainly walk and talk, and I love learning just about anything and everything. I’ve always wondered what my “symbol” would entail: maybe a banana: overcoming the doubt of others? The more I thought about this, the more I realized that this symbolizes the endurance of my parents. Or maybe it was a seahorse: the animal symbol for epilepsy, or the purple ribbon, the color for epilepsy.

Recently, I had an epiphany: this “tangible symbol” I have been looking for is within me. It is not something I can hold and glance at with marveling eyes, but instead, it is me telling my story. I don’t need something to hold as if it is proof of endurance; I just need to be grateful for my life, for where I am now, and to share my story, whether it is through poetry or through this platform- or anywhere else.

(Speaking of poetry, I was at a local event in October getting ready to read a poem about epilepsy, because who needs a comfort zone?)

#Epilepsy #Depression #Anxiety #InfantileSpasms #MightyPoets

Special needs parenting comes with many challenges that vast majority of people don’t necessarily understand. We are out here quietly struggling and pretending to be strong because nobody wants to see us weak.
Once someone hears that your child is different abled, people start to picture a incredible strong women who is a fierce advocate that doesn’t take no for an answer.

While I like to think of myself as such, the reality looks very different. I’m more like a typical hot mess, coffee addicted, messy bun, dropping kids off in pajamas - frankly my house is a mess too and my memory really SUCKS! I would love to say how organized I am, flawless med schedule for my youngest, how I meal prep and everyone is on Keto gluten free whatsoever diet. But... I would lie– Our pancakes come out of a box. TADAAAAHH!! Wellll... Actually, cereal is more of a breakfast choice in my house.
What I am trying to say is, NO, I am not the special needs mom you picture. I cry tons, my mind is packed with worries about break through seizures, forgotten meds, Tuberous sclerosis complex, arrhythmias and the list goes on.

We are humans, we are moms who just want the best for our children. I think majority of mothers do. Bottom line is, we are not super heroes, we are fragile too! If you know a special needs mom, check on her. If you know someone is a special needs mom but you’re not close to her (yet), go talk to her. She will appreciate it. Some of us don’t get a lot of social interaction but we need it more than you can imagine.

I am not good at writing, in fact mommy really sucks at this!
But... I want to tell you something

I see you and I am sorry!

I am sorry for the long days/nights in the hospital, you 3 didn’t know what was going on– this was way past anything you could’ve understood.
I see you walking up and down that hall, Nathan - I see you Emily trying to keep Samuel calm and giving him half of your cookie. I see your concern for your baby brother Elijah, wondering why is he again in the hospital? I hear you (Emily) whispering into Nathan’s ear that ”only sick babies go to the hospital”. I see you, Samuel– craving for all of my attention and wanting to explore this big world, yet here you are sitting in your stroller in the NICU waiting area.

You 3 just come along the ride - it’s a true roller coaster with Tuberous sclerosis complex. You never fail to smile and see the positive in each situation - we drove half way across the country so your baby brother could get the help he needs. Not once heard I complain anyone of you instead you were excited about the hotel pool. You need so little to be happy and yet you deserve the world! You 3 are truly special and I hope you will grow into remarkable adults with tons of compassion for individuals that don’t fit the “norm”.

I could not be prouder of you - I am truly blessed with such kind hearted children.

Just know,
Mommy sees you and I love you! #TuberousSclerosisComplex #InfantileSpasms #Epilepsy #SpecialNeedsParent