Monday, March 14, 2016

Spring Greetings!!

Bryce and I had our first vacation in a long time in Eastern Oregon.

The dry climate helped Bryce overcome his illness that he was fighting for a couple weeks. I am so happy to have had a little home away from home - Each day was just filled with snuggles, playing legos, games, etc. 

EASTER EGGS!! How wonderful it was to have friend Elise play with us.  Those eggs are sooooo cute!!

Bryce liked stopping at the restaurant halfway, where we could eat some food, and we both enjoyed playing cards.

Detroit, Oregon. what a cute place for lunch. I told Bryce the story of grandpa, who took mommy and uncle Shaun here in the summer to camp and go for boat rides.


One of the most delightful parts about vacation is the indoor bath, its so big, its an indoor swimming pool for Bryce!! Daily therapy -

Just when we thought spring was here, a huge snow storm came. We passed through the mountains just in time.


On the way home, it was a blessing to have grandma follow us - had we stayed one more day, we would have been snowed in for a couple days. So much for an early spring in Eastern Oregon.

Wednesday, March 9, 2016

Happy 4th Birthday Baby Boy!

Sweet Bryce is now 4 years of age.

My little Jedi, with little Jedi powers - you are a blessing my darling boy!! It was an honor to celebrate this day with you.

Large round balloons with Darth Vader and friends is simply the coolest balloon ever seen -

Further, thank you to Make a Wish Foundation for the balloons and the tremendous gifts. The wish this summer is also a precious and touching gift for all of us. Bryce is so excited. We as a family feel touched by this upcoming WISH.

Also, thanks to our dear friend Sue, we finished up our solar system in Bryce's room - thank you for the glow stars - its just beautiful.

This year,  I am working on a special video and doing more awareness campaigns for children with SMA. I have also been able to get more medical equipment such as a bath chair - and the new feeding chair should arrive in a couple months from Families of SMA.

I want to take a moment, and say thank you to all my friends and family - for the prayers, the love, and the kindness - having hope, faith, and endless love -makes it easier for me to be there for my son -

Every day - I am thankful that Bryce and I stay happy and continue to fight this disease - we never give up on a cure that might be in the future yet we are not afraid of the future either - we live in the moment, we embrace hope and faith!

We surround ourselves with joy and love -

The mantra's at home are:  Bryce, "you are my little trooper" "my little Jedi" - I tell him he's so smart, he is strong, and he is awesome!! Bryce sometimes will say, "mommy your smart too, your awesome too"

So, another year, we made it to 4! That's 2 years more than the doctors had expected.

Cheers to you my sweet angel! My little warrior!!

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

Tuesday, March 8, 2016

Thanksgiving 2015

What a terrific day with the family, eating Thanksgiving dinner, kids playing games, Bryce driving on his own this holiday season.

The boys loved playing "drive the four wheeler"

Uncle Shaun taught Bryce to drive on his own a bit.  What a big kid, driving such a cool remote control vehicle. Way to go uncle Shaun.

Bryce really enjoyed dinner, he ate bites of  uncle Shaun's smoked turkey, we've been talking about it for days. The mashed potatoes and gravy were also a hit.

I was very impressed at how wonderfully he partipated with us at dinner, ate like a grown up -

One cherished moment, was when we said grace, each person and the children including Bryce saying, I am thankful for  Easton and Emerson" his cousins & best friends.

Bryce picked out his Christmas tree this year!! Thanks Grammy for all you help getting out to the farm. What a fun day!