I am getting through the emptiness. Sometimes. Sometimes, not so well.
I had a frightening conversation with a colleague once. This person could not understand my emotional and life-directing commitment to my son. My son in their words “does not contribute to society.”
I suppose each person perceives their own “truth”.
My truth, and that of those who interacted with Jeffrey, was that he was life changing. How many days were made bearable by those beautiful questioning and loving eyes? How many days were made more livable by a warm hug from those strong arms and the high beating heart in his strong chest under my head? How many days took on a hue of magic when I would hear his laughter and the excited jumping up and down would shake the very foundations of the house? And how many days I would abandon whatever needed to be “important” and spend half an hour cuddled next to him in the bed so HIS world would be better?
Frankly, what most of us consider important, leaves very little trace in the world. Yes, the taxes were paid on time. Yes, the trash was put out and collected on time. Yes, the schedule was posted as promised. Yes, the costume was finished with imperfections, but a good showing.
And yes, the basement was baled of water so mold would not grow after the flooding.
What was important:
Those strong fingers gripping my hand. My hand rubbing his tummy when it was unsettled. My signing “I LOVE YOU” with my left hand because my arthritic right hand no longer can find the dexterity. Those eyes staring into mine so that they lasered the love onto my retina. Jeffrey waiting by the door as Mommy or Daddy drove into the garage, only to disappear into his room and immerse himself in Sesame Street videos as soon as we stepped into the house.
Careful watching. His watching as I poured a glass of wine proclaiming it, “Juice.” “Checkup” which will always be the word for ketchup in our house. Writing the journal for the next day with each element registered by the expert. Adding requests to that list. Occasionally he would tear it out and rewrite the page himself. Seeing the concentration and determination for each new part of a Lego project. Being presented with 3 lego pieces at 4AM and dragging glasses, brain and attention to a Lego project that had gone wrong by one brick placement 3 pages back. Photos. Photos to tell a story of Jeffrey’s life, and the life of his Mommy and Daddy in the outside world.
The gradual acknowledgement and interactions with “friends”. These were mostly our caregivers through the years, but the ties remained. When they would come back to visit there was an initial rejection, and then the tentative re-connection that would put a light on the faces of both parties.
Then there was the gradual change in perception that David and I both experienced in our world connections. A selective process began where Jeffrey did the sorting. Only those whose deep inner soul accepted our son were allowed into our house. But the ripples of that awareness spread wide. Never again would I look at a student without wondering what was happening in the inner self. Never again would I be impatient about comprehension. Rather I would consider a different way of presenting the problem and the process. I respected the small changes.
I tried not to judge. I tried not to be negative. This patience took many years. I attribute this all to Jeffrey.
So as much as it bothered me to hear someone view my son as unable to contribute to society, I knew differently. And those whose blinders do not allow them to perceive what is important cannot be helped.
The wise fox of Antoine Saint-Exupéry said it best.
“Il est très simple :
on ne voit bien qu’avec le coeur. L’essentiel est invisible pour les
yeux.”
“It is very simple: One sees well only with the heart. The essential is invisible for the eyes.”
Jeffrey contributed “L’ESSENTIEL”
I miss him so much.