Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Monday, January 12, 2015

Finding Courage


You gain strength, courage and confidence
by every experience in which you really stop to look fear in the face.
You must do the thing you think you cannot do.
-Eleanor Roosevelt
 
We have returned from our overnight stay at Boston's Children's Hospital.
 
I am happy to report that Nick's EEG was clear.
 
It was completely clear, with no sub clinical seizure activity noted.
 
This is the first time ever, since he was 5-years-old and diagnosed with Electrical Status Epilepticus of Sleep Syndrome, that his test was clear.
 
It is a humbling moment, a hard-fought defeat of a very formidable foe.
 
I am happy beyond words.
 
I am also inspired and in awe of Nick's bravery and resilience. Assisted of course, by his equally brave and always supportive older brother, Weston.
 
 
When we received the happy news, Nicholas said,
 
"Mummy, I made it. I made it through the pain."
 
And true to his spirit, throughout our stay, he never complained.
 
Not even once.
 
 He sought refuge from the simplest things.
 
 
like the colorful fish in the lobby
 
 
his stuffed dog Spikey,
his blue SpongeBob pillow
and the very cool pink backpack the hospital provided that held his leads.

 
He enjoyed pressing the button to make his bed go up

 
and pressing it again to make it go down

 
But his favorite part of our visit by far,
was the fine hospital cuisine and his favorite ice cream treat.
 
For me, this visit was about gaining strength from the companionship of some very special others.
 
Nick's Neurologist and our good friend, Dr. Takeoka, made a special point to come visit us on Friday evening after his busy work day. I do not have the words to express my gratitude for this support. His small gesture of kindness brought a bright, shining light of compassionate care into Nick's room, removing our fears and providing some much needed comfort.
 
I have commented often on this blog about the earthly angels that accompany us here on our journey to raise Nicholas. The enlightened doctors, therapists and teachers that stand beside us during our most challenging moments, alleviating our fears and calming our spirits. To us, Dr Takeoka is one of these special few.
 
Most importantly to me, was a visit from my brother, John and Courtney, my newly acquired sister. They sat with me and Nicholas, laughing and chatting and whiling away those lonely hours, prohibiting me from sitting alone beside Nick's bed thinking about the beast and empowering him by acknowledging his presence.
We were all so engaged in conversation, I neglected to take a photo. But I will be indebted to them always for the depth of their compassion and the strength of their spirits. To us, John and Courtney are valuable members of those special few.
 
I believe in the power of love.
 
The ability it has to brighten the spirit and heal both the body and mind.
 
The next morning we received the happy news about Nick's clear EEG, bringing many smiles to all of us. Even the stoic Pete laughed out loud and posed for pictures.
 
 
Weston too was all smiles from the happy news.
And unusually tolerant of his photo-seeking mother.
 
 
 
Our ride home was filled with an abundance of emotion. We felt an overwhelming sense of: exhilaration, relief, gratitude, happiness, fatigue, angst, some sadness and a profound sense of thankfulness. It is a bitter sweet feeling, a poignant victory that comes from many years of trial, turbulence and tears.

This lack of seizure activity will allow Nicholas to learn, grow and develop into a happier and healthier man. There will be no more cognitive regression. His speech and behavior will improve. He will have the ability to run, jump and play safely without fear of dropping to the floor. He can sleep peacefully and awake refreshed finally able to live without interference from the debilitating whisper of that terrible beast.
 
Processing all these feelings is difficult. I am once again experiencing a type of emotional whiplash. Perhaps not surprisingly, Nicholas and I spent much of the weekend......sleeping.
 
 
We are free at last.
With only one more terrible monster to conquer.
But that fight is for another day.
I am happy right now just to relinquish my sword
and humbly thank the powers-that-be for our victory.
 
 
I am so very proud of my son.
 
 
And so very thankful for the loving support we receive from others.
Thank you all.