May 19, 2019
Two years ago today would be the last day I spent with my twelve year old Son, Alexander, before his life was interupted by a seizure disorder of unknown origin.
life, my husband's, my younger son's, all of us...our lives have irrevocable changed since.
As I reflect back upon that day I wonder what we did?
What did I say to him? The Alex that I had given birth to, that I had raised
for twelve years?
Did we laugh? Did he smile? Did I tell him how very much I loved him?
We didn't have any indication that he was 'ill'...that I would lose him in a matter of hours...
Alex survived. He survived
uncontrolled seizures that found him in a coma for 40 days. He survived a ninety day hospital stay on a ventilator, with numerous drugs being pumped into his body to quiet his brain and allow his body to heal.
We all survived.
Since that fateful day we have learned to navigate a quiet 'illness' that waits, just around the corner, to strike. A hiccup that happens in his brain...it comes without warning, setting our world in turmoil...because
we fear what could happen when he seizes...because we know, we know the agony of watching our child fight for his life.
The doctors tell us we are in uncharted territory, most children do not survive what my Alex went through. They say
he is a miracle. He is.
He is changed though. He came back to us minus a lot of his memories. We have learned to navigate around that. When he was asked if it bothers him that he doesn't remember so very much he responded no, he will make
more memories...(wisdom beyond his years)
He came back to us different. Still our Son, but different. The doctors tell us that the amount of medicine that he requires daily effects his personality. It does.
have navigated through aggression and confusion brought on by medicine levels being too high, too low, impacted by external things, (caffeine, vitamins, too much sleep, not enough sleep).
I have navigated through depression, through PTSD,
that still, occasionally grabs me.
Daily we have learned to 'go with the flow'.
Alex has made strides from when we first brought him home on August 18, 2017. He quickly did away with needing a wheelchair, a feeding tube,
help with daily activities.
Alex rides a bike, a skateboard, loves to go fishing, helps his Dad at work... Alex is amazing.
In the two years that have passed since May 19, 2017...that last day
that I cannot remember before my world changed ... I have changed as well.
I have become acquainted with my child. A different version of the one I knew. Now a fourteen year old with definite ideas about what he likes and what
he doesn't (he has a list that starts with 'glitter') He is sarcastic, with a quick wit, when he is having a good day. He is kind. I have watched my Son embrace disabled children and tell them everything will be ok.
he speaks of God...of seeing him when he was in a coma. He has said of people (and animals) that have passed on that they are alright...this he says he knows...because he was 'over there'.
Hard to fathom that my child saw Jesus.
Harder still that I could not protect him from all of this. That I, as his Mother, cannot make any of this better.
Alex is unable to attend school. His medication has him sleeping through half of the day...so he is
home with me.
I have watched as his school friends have moved on, chosen high schools, and soon will graduate from eighth grade... I so wanted my Alex to experience this... But, it is not to be.
I am learning acceptance.
I share our story with you for these reasons...In the two years that I passed I have learned this...
Every day... EVERY DAY... be thankful ...
I am. Even through the darkest days... Be thankful. You truly
do not know how much more difficult it can become...I have seen but a glimpse of what could have been... I am thankful. Be thankful.
Every day find joy in something. It doesn't need to be monumental. Alex
likes to listen to the birds sing in the morning outside his window...something he just told me and it made me smile.
Learn to embrace, to relish in, the small stuff. Take the time to enjoy your family.
The art work the kids bring home, the silly story they share...the mundane is to be celebrated...for one day, even sans tradegy they will not be there....
Everything changes...the good and the bad. The saying, 'this to shall pass', is so very
true. If you find yourself in a dark place know that it will pass...as will good times...nothing is permanent...learn to 'go with the flow'
Your family is most important. Over EVERYTHING. Family first. Not your job, your house, your possessions...nothing
else matters. Keep perspective. Chasing that promotion, the raise, the status means nothing. Family first...always.
And finally, most importantly, have faith... I am not advocating any particular religion or doctrine.
I am saying to have faith in a higher power. God exists...my Son saw and spoke to him. Through your worst day have faith. My faith is what has gotten me this far. I have not been without my doubts along the way, but after everything else has been stripped
away, it is truly all I have.
I will share a quick story with you..when Alex was in inpatient rehab we were bantering back and forth, having a lighthearted moment, and I told him next time he wanted to see God he should go to church...he responded
very seriously and said, "He is not there Mom, he is outside, he is in the trees"...
Center yourself and be thankful, let the aggravation of daily life fall to the side and find joy, rejoice in the mundane, 'go
with the flow', put your family first, and most of all have faith in a higher power.
...and maybe go hug a tree.