One thing that is for certain, you will never hear me say “I wish I had held him more.” I went on auto-pilot after Kaleb’s diagnosis, I enjoyed every moment with him yet at the same time I held a high amount of anxiety and fear,
(as hard as I tried not to) I was constantly wondering when we would lose him. I was constantly on "high alert" trying so hard to anticipate his every need. My priority during this time, was to cram as much love as I possibly could into the short amount of time we would have with him. I spent hours upon hours of everyday sitting in a chair, or laying on the couch with him in my arms. We cannot be certain of what his brain allowed him the opportunity to know, he may not have known what the word love meant, but I am certain he knew what it felt like. Oh sure, I had my days, especially prior to diagnosis, where I needed a “mommy time out” and there were a few times even in the last couple of years when I would become frustrated - with my inability to comfort him or know what to do for him. Occassionally, I got a little stir crazy from sitting in the house all the time, but I knew that was a small sacrafice for me to make as he was just much more comfortable being at home. Being one with Kaleb made me so in tune with him that I could tell in the dark when he was having a seizure by listening to his breathing, and I could tell, also by his breathing, that he would soon spike a fever. That was our means of communicating, it was mostly guess work on my part but he always seemed comfortable and my hope was I provided him with everything he needed.
I knew during the month of September, he was rapidly declining, I could see his body getting tired of fighting this horrible disease. I was trying to prepare myself for those final moments as best I could but when it happened I fell apart, you just can't be ready to say good-bye.
My days are now free of anxiety and I can honestly rejoice in the fact that he is no longer suffering, but my heart is heavy with the loss it feels. I’m doing “OK”- it doesn’t hurt any less, on the contrary I think each day it hurts a little more because it’s been that much longer since I’ve seen him, held him, touched him or kissed him - but I think my heart is getting used to it’s new normal. I’ve run across this saying many times in the past couple of months “Fall down seven times, stand up eight.” It’s hard trying to get back on my feet, but I haven’t given up, I know I can do it and I will do it, eventually.
My friends, hold your children a little closer today, never take a single moment for granted, only God knows what tomorrow holds. Christopher I love you with all my heart - I wish you were here for a hug! Jessica, Andrew and Charlee - I love you guys and I am grateful for the opportunity to be in your lives!
God sent an angel to the earth
by Unknown Author
God sent an angel to the earth...
The sweetest angel too
and for such a tiny little thing,
he had so much to do.
He knew he did not have much time
upon this earth to stay,
so he did not waste a second;
he got started right away.
His eyes were bright and sparkly,
he took in every turn.
He did not miss a single thing,
because Angel came to learn!
God sent him here to touch the hearts
of those he could not reach...
He taught them courage,
strength and faith,
because Angel came to teach.
His tiny little body was
so full of God above,
you felt it when you held
him,
because Kaleb came to love.
In four short years he managed
what many never will.
When he went home to Jesus,
his purpose was fulfilled.
He learned and taught,
loved and played,
he learned his lessons well.
I know He was so proud of him
when he went home to dwell.
But when I miss him
OH-SO-MUCH,
I can almost hear Him say,
please understand, his work was done...
Kaleb did not come to stay.