Bridge the Gap – SYNGAP – Education and Research Foundation

March 2016 Family Spotlight: Happy Father’s Day

March 14, 2016

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Laura M.

“Happy Father’s Day” I casually told P almost 7 years ago.  The look on his face said it all, “oh.”

Since then, there have been many “oh” moments.

There have been moments of BLISS.

Like seeing P do kangaroo care as they wheeled me out of the operating room, still somewhat sedated.  And watching the hospital staff pause as they witness it, too. Or like having K wrap his tiny little fingers around my neck.  Icy cold as they sometimes may be, I’ll never get tired of this.

There have been moments of hilarity, like me shouting “boo!” the moment K found me in a hide and go seek game, which sent him shrieking across the room as he quickly, frantically and excitedly toddled away from me.

There have been moments reflection, some profound, some not so much.  Like hearing a diaper bomb go off and reacting, “oh crap.”  And then shaking my head at what I just said.  Yeah, no kidding, it’s crap.

There have been moments of serenity, like laying with K out in the yard and looking up at the awesomeness of the sky and trees around us.

There have been moments of tenderness.  Like watching P and his coffee shop buddies play with K, watching their soft eyes light up.   Yeah, men can be strong.  They are our strength, but they can also be oh so tender, when given the chance.

There have been moments I never thought I would have with my parents, like handing K over to my scared but excited dad, who had never held an infant until then (not even us when we were infants).

There have been moments of nervousness and feelings of uncertainty, like watching K with other kids and noticing, he’s different.  But don’t worry say the doctors.  All kids are different.  Just give him time.

There were moments of disbelief, like realizing K wasn’t sleepy and nodding off. He was having seizures.

Or like, hearing “sorry, but you haven’t tried enough drugs for us to teach you the Ketogenic diet,” a diet known for many centuries to treat epilepsy.“ Come back in like 9 months (at least) after he’s tried 3, maybe 4 drugs with no success.  We can talk then.”

There are times of unending exhaustion, like the mornings after reading through the night, looking for clues and trying to make sense of it all. Or the other mornings when we stayed up with K because he could not sleep through the night.

There were moments of fear, like watching K, seemingly sound asleep, but twitching and jerking, every 5 to 10 seconds, not knowing what to do and not knowing how long it will last.

There were definitely moments of agitation.  Like having someone say, “I have a child K’s age.  I know what you are going through.”  Really?  Your child is normal.  Does your child have over 100 seizures a day?  Do you know what it’s like to literally drop everything at ANY GIVEN MOMENT to catch him before he falls and hurts himself from a seizure?  Do you know what it’s like to see someone who is supposed to watch over him, literally drag him around thinking he is being obstinate, when in reality, he’s having a seizure?  Do you know what it’s like to watch your child be so drugged up he can’t even stand straight without support?  So drugged up, he goes into rages for hours, every single day?

There are heartbreaking moments, ones you never wish on anyone.  Like seeing the look on K’s face when he knows he’s not well and he’s scared, totally scared.

Or like watching the strongest person you’ve ever known, cry.

Sometimes, yes, sometimes, there were moments of resentment, liking watching other kids and their parents enjoy any degree of normalcy.  Why can’t we have that?  Even if for a little while?

There are moments where so many things are going off inside you, you have no idea what you are feeling.

Like when we got the call.  The call that told us K has SynGAP.  That SynGAP is why he is having seizures.  But “we can’t talk to you about it because we’re not geneticists. Make an appointment and they will tell you more”….but the first available appointment is 3 months out. Then yes, Googling.  Googling and finding out that SynGAP not only causes epilepsy, but speech delays, autism, and intellectual disability.  And then finding an online group of SynGAP families, all very excited and eager to welcome us to the SynGAP club.

There are moments where you feel defeated, like when the genetic issue finally hit home, because THERE IS NO CURE, THERE IS NO TREATMENT.  You’re not a doctor, your’re not a researcher.  If they can’t figure it out, what can you do?  How can you beat genetics?

There were moments we wondered whether humanity still exists.  Like asking for a wheelchair at the airport for K as I try to explain that he can not walk on his own at the moment, only to be rebuffed because “he looks normal and healthy.”  Then having to explain that in the time I was being told no, “he had 2 seizures right in front of you, and you weren’t even paying attention enough to notice.”   Really, do you think I WANT to ask for a wheelchair for my son?

But there are also moments you’re reminded that humanity is still alive, like the stranger who took a couple of small boxes to my car…thus allowing me to carry K to the car….all without my asking for help.  And no, K was not seizing at the time.

There are moments of doubt, self doubt.  Like hearing different doctors voicing opposing beliefs about the same drug, each with equal conviction and having to decide whether K should take/continue the drug.  And with any choice, looking like an irresponsible parent to at least one doctor.  It sounds minor, but you lose medical support when you are viewed as an irresponsible parent.

There are moments of loneliness, because who can you really ask about whether you made the right choice about any treatment?  Who will experience the aftermath other than K and us?  Who will lose sleep over it?  Who will lose a little bit of their life?

There are moments we questioned our faith, moments when we wavered.

But faith is faith.  And you can’t explain it.  And you certainly can’t will it.  But you do have a choice.  Fight and abandon it.  OR allow and embrace it.

And so there were also many times of absolute faith.  Absolute belief in K’s ability to get better and better and better.

And yes, there are definite moments where we decided, where we decided we are ready.  Ready to take on each and every day, each and every moment to make sure K gets every chance.  Ready to hold steadfast to our belief, our faith, in his ability to heal.

Ready to have a different perspective on his genetic outlook.

Whether you have a special needs child or not, you, we, go through a lot of “oh” moments.  They can make us feel like we’re on top of the world, totally exhilarated.  They can make you feel helpless, totally unprepared.

A huge lesson we’ve learned in all of this.  You choose how you feel.  How you react to what’s happening.

You choose your “oh” moments.

So, today and every day forward, we choose to live life by a smaller set of “oh” moments, the ones that bring positive energy, positive change, and healing.

Today and every day, K wraps his little fingers around my neck (oh, oohh, oohh, oohh…)

Today, we are a little smarter about genetics.  Actually epigenetics and its possibilities. (oh??)

Today, K is alert, making steady progress, and most importantly, happy (Oh my!)

Today, K is close to being consistently seizure free (Oh, Yeah!)

Today, K is medication free (Oh, Hallelujah!)

Today and every day forward, K is healing (OH, YOU GO K!)

K is for our son.

K is for all the kiddos out there in the same SynGAP club.

K is for all the kiddos who walk a different path.

K is for all kiddos, young and old, because at some point or another, we all need some cheering on.

Help us cheer K on.

#OhMoments #GoKGo!

Help us out here: https://www.razoo.com/us/story/Bridge-The-Gap-Syngap-Education-And-Research-Foundation

Read more about K at www.ksrdevelopment.com

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