Raising Daniel Hasselberger, a journey with Polymicrogyria: January Thoughts of Blue and Scoliosis....

Tuesday, January 3, 2012

January Thoughts of Blue and Scoliosis....

When I dreamed of my children and what their lives would be like...never in a million years did I envision the life that I have been led to. Never in a million years.. as the saying goes...did I know that such a love and such a pain could exist interwoven into one tear. Tear upon tear upon tear drop. Dropping down the cheeks of a woman who simply can not bear the worst and who is grateful for the best.

Today is January 3, 2012 and I'm writing in blue because it makes me think of cool ocean waves... and it also makes me think of cold. Contrasts. Its very cold outside....but warm by the fire. On my lap I have a 19 year old cat (Tinker) and a 5 month old Kitten (Theo).

Daniel is recovering from a horrible pneumonia...and on Thursday he goes for a visit to the Orthopedic Doctor... Dr. DeLuca.. one of our favorites...for an evaluation of the scoliosis...and in all liklihood Daniel will be facing spinal fusion surgery... and once again...the sweet wonderful boy with the face of gentle sunshine has to face unrelenting pain and discomfort for however long it takes to straighten his thin frail 14 year old body.

Scoliosis... probably attributing to the two illnesses in two months he has faced... I have been reading things like...

"Lung and heart damage. In severe scoliosis, the rib cage may press against the lungs and heart, making it more difficult to breathe and harder for the heart to pump. In very severe scoliosis, damage to the lungs and the heart can occur. Anytime breathing is compromised, the risk of lung infections and pneumonia increases."

So now I sit...just contemplating. Just remembering my feeling of emptiness on Christmas when I woke up to see Daniel's bedroom empty...and I know that we have to do everything we can to make his life comfortable... I just wish their were an easier way. Contrasts. Why does the sweet gentle kind little soul have to suffer. Why did Christ have to suffer.

I don't know. All I do know is that I am writing in blue tonight because it makes me think of the way I feel when I am by the ocean and I can smell the sea air... and I close my eyes and I am walking there with my feet in warm sand. And all of my children are walking with me.