It's daddy posting...
Last week it felt like spring, and that means spring cleaning. So like most dads I called on Isaac. "Isaac, my boy, we've got to go clean the garage." He looked at me like "what dad?"
Out in the garage we cleaned and organized tools for near future projects around the house. Grouping everything by project. Isaac, grasping two bright, shiny, three inch screws, was happy to be involved. I showed him all the tools as I was putting them away and explained what they were and what they could do. Isaac was interested and talked to me in his little Isaac way. After a while, like every other boy helping his dad clean the garage, Isaac whined as if to say "dad how much longer?" I finally let him go. I pushed him outside to where mom and big sis where planting flowers.
That's my boy. Perfectly normal, except for the fact that he can't move and needs all these machines to stay alive. Sometimes I can almost block the machines out, but I'm glad they are there when things go south.
The last few months have been bad in the battles with SMA. We've lost Gwendolyn and Holly. I will not even pretend to know how their families feel or what they are going through. Yes it's true that Isaac has the same disorder, but I am not the same parent or person as them. No one is. No one can feel their pain and loss. All I can say is that I feel sad.
After spending time outside with the family, Isaac's nose dried up. We don't have portable humidity for him. Therefore one of his morning treatments started to go bad. Isaac got a bloody nose. After I wiped the blood from his face and we aborted the treatment, we waited for a few minutes until the bleeding stopped.
This prompted me to call the medical supply and inquire about portable humidity. The cost would be about $400 and take a few weeks for modifying the stroller. Instead I went into the garage and gathered materials and tools. I'm happy to say that after a short time of thinking and testing, I've modified and powered Isaac stroller up to have everything he has inside the house. This will help everyone. Isaac will have his humidity and capability to use other powered machines on the go. It will help Jenna and myself not worry... And we are staying "one step ahead."
With the death of Gwendolyn and Holly, and Isaac's bloody nose, the inner stress has gone up. I'm not sleeping at night. I lay there in bed and thoughts go in and out of my mind and I frequently find myself, without meaning to, mentally reciting Isaac's eulogy. "Hello darkness my old friend..."
More saints are coming to aid...Jack and his wife and his crew at Highland heating and air. Awesome is the only word I have.
The saints are all great, but when the darkness falls and I'm all alone, I must face my demons.
My song, I like the Disturbed cover.
"The Sound Of Silence"
(originally by Simon & Garfunkel)
Hello darkness, my old friend
I've come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains within the sound of silence
In restless dreams I walked alone
Narrow streets of cobblestone
'Neath the halo of a street lamp
I turned my collar to the cold and damp
When my eyes were stabbed
By the flash of a neon light
That split the night
And touched the sound of silence
And in the naked light I saw
Ten thousand people, maybe more
People talking without speaking
People hearing without listening
People writing songs
That voices never share
And no one dare
Disturb the sound of silence
"Fools," said I, "you do not know
Silence like a cancer grows
Hear my words that I might teach you
Take my arms that I might reach you."
But my words like silent raindrops fell
And echoed in the wells of silence
And the people bowed and prayed
To the neon God they made
And the sign flashed out its warning
And the words that it was forming
And the sign said,
"The words of the prophets
Are written on the subway walls
And tenement halls."
And whispered in the sound of silence