World Pediatric Stroke Awareness – Bravelets

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World Pediatric Stroke Awareness

Posted on April 21 2015

World Pediatric Stroke Awareness
It's my belief that newborns come into this world entrusted to their parents to take care of them, to love and nurture them every step of the way.

I will NEVER forget the morning I received "THE" phone call.

Brendon (only 3 days shy of turning 19 months old) and I were in the kitchen. I was feeding him breakfast. He always wore a smile; this morning was no different from any other.
Then the phone rang.

From the caller ID I knew I was about to receive an answer to a troubling question that had haunted me for two weeks, just after learning Brendon had a diagnosis Cerebral Palsy. (The symptoms were apparent within two weeks after he was born, yet I couldn’t figure out how to quite articulate what I was witnessing. There was much self-doubt.)

My stomach dropped.

The verdict was about to be revealed: BRAIN TUMOR or STROKE?

Is one really worse than the other?

The answer: STROKE. (Something I had just learned to be a possibility only two weeks prior, when Brendon was being evaluated for the first time by a neurologist.)

With those words my breath was abruptly ripped from my body, as if I had just received a huge blow to my chest. The lump in my throat grew with each second. (My breath is stolen and the lump in my throat grows, once again, as I type, taking myself back to those very moments.)

As soon as I put down the phone, I myself broke down, grabbing my son as tightly as I could without hurting him. The tears were uncontrollable; the wailing was uncontrollable (this is not like me at all). I didn't want Brendon to witness such a display, it would only alarm him. However, I couldn't get control over my emotions. The only comfort I could seek came from holding my child, the very one who survived a stroke before his birth and has multiple diagnoses as a result but never swaying from being who he is.

These diagnoses didn’t (and won’t ever) define him.

Brendon, at such a young age, did his best to comfort me. Then he realized his mother was truly distraught over something and she wasn't snapping back. He had never witnessed anything like this before. He started to cry. Unbeknownst to him, my emotional outburst was because I was instantly terrified for him – never hearing such a diagnosis for a child prior to it pertaining to my own child. That literally made me terrified for Brendon.

Instantly the accusations against myself and the irrational guilt poured in. What did I do to my child to cause his stroke during my pregnancy? I would never do anything intentionally. It must be my fault…!

Next the questions flooded in: "Will he be okay?" and "Will he have another stroke?" and "Will he grow up to be like his peers or will he stand out?"

There I was holding this beautiful boy, a gift from a place I can only imagine to be Heaven because he is so Heavenly in every way - he MUST be from Heaven! Brendon, a child that I love more than anything I have ever loved before. Holding him began to calm me.

It took years to begin to understand there was nothing I did to my unborn baby. It took years to understand that it was all going to be okay, even though I tried to convince myself of that every day.

Let's just say the difficult path to answers and help for my young child created stepping stones to get to this incredible journey of helping others and advocacy.

I share this story because I never want anyone else to endure such a difficult path to finding answers and help for his/her child.

Our children deserve us to be the best we can be so they can be children - carefree, happy, imaginative, loving... - whether it is a child in a wheel chair, wearing a brace or taking medications to stop seizures.

Children just want to be given the opportunity to be who they are. It is our job, as parents, grandparents, doctors, teachers, health care providers… to facilitate this.

We can't let our children down by dropping the ball (a phrase in the USA that means to let go of an opportunity). Since strokes can impact any child at any point in their development why not take a second to share the fact that this can happen.

You never want to hear those words for the first time when you are hearing it as a diagnosis for your own child or a child you love.

In my son’s case, this knowledge could have helped him some 19 months earlier. We lost so much time in such a crucial time during his development.

Our children deserve the best!

Knowledge is POWER!


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