Wednesday, March 9, 2016

Happy New Year 2016

"Little boy, you remind me how so much depends on days made of now" from 'Little Boy', by Alison Mcgoo

 Spending a healthy Christmas and New Year celebration with Bryce was the greatest gift a mom could ever have.

At Home Decorating Tree
Doctors and providers don't prepare parents to face the challenges of a child with a terminal illness; infact its about the quality of life!

I suppose I just found myself somewhere between  Halloween and the holidays, just absolutely adoring my sweet child - making as many memories as we can, play together for hours building Legos, making cards, drawing pictures reading books.

The cloud lifted from the past few years, I have come to terms with his diagnosis, and now that we have access to medical supplies, there is nothing to worry about - just enjoy each moment we have.

With low enrollment at the college, I found myself to have the entire holiday days off with Bryce.

We spent a few days at New Year's at Grammy's too. He enjoyed watching football.

Bryce's smile and love of life is simply breathtaking.

In the morning, especially as Bryce wakes up, he is often refreshed and eager to play, he says, "hi mommy, I am ready to get up!" I take off  his bipap mask, give his kisses, and snuggles.
We talk for about 30 min every morning at wake up, sometimes I lay next to him and he likes to look at me and ask me questions. Sometimes he likes to pull my hair or poke me and laugh. Then he asks, "how did you sleep mommy?"

Look - I am driving at MAX SPEED

Its pretty cool to watch my son drive on the old country road where I learned to drive.
Other times he asks me to just hold him,  he rubs his eyes, ands thinks about the plans for the day. He likes to read books also in the morning with me holding him.

 Bryce has a great sense of humor, he is starting to tell jokes and create some fascinating stories about super heroes or super frogs -

"Beautiful Beautiful, Beautiful Boy!"
"every day, and every way, its getting better and better!"

 by John Lennon

Bryce at Grammy's - His supper happy face, super spiderman wave
Bryce's muscle atrophy developed last summer in those two fingers, so he can't straighten them.

Bryce asked me awhile back, "mommy why are my fingers bented?" I said honey, "God gave me, you, and you are my angel. Angels are born with special gifts and sometimes special situations.

Bryce knows he has SMA - whether he knows what that means is a different story. I know he knows its why he stays home often when he is sick, why he has all the medical equipment and bipap at night.

I don't think Bryce knows that SMA-1 is a terminal disease -

I don't think children with SMA-1, every think about this -

I am so grateful that GOD has given me the strength to care and love Bryce, to handle medical situations without fear and without tears - so I can be strong for my son

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