Monday, January 2, 2017

2 Poplular Videos: World of Speed and Happy 4 years

Recently, many have asked for this link of Bryce at the World Of Speed to be updated on this blog- this was a wonderful recent video

World of Speed, Museam, 2016, Wilsonville Oregon

Spring - Easter 2016, Charbonneau Oregon,

Love you Bryce - You momma forever!

Friday, December 30, 2016

My baby in Heaven: On Eagle's Wings

My darling Bryce,
I miss you so much and life had been unbearable without you!

No one-one sheds more tears than I -

There is so much I want to say, but don't quite know how.

 I enjoyed singing songs with you! I enjoyed your singing with me. I enjoyed you teaching me as many songs as I taught you.

It was fun last year singing Rudolf the Red Nose Reindeer and Dashing through the Snow!

I enjoyed everything about you and unfortunately my mind and heart just don't quite get along right now.

I know that when Jesus came to you in the hospital, he lifted you up, he gave you the strength and a light so you could drive out of your hospital room, give the PICU staff a signed photo and then came home for another few weeks with your mamma & family. On Oct. 22nd, you were in total peace and in God's hands and you had no pain and no suffering.

My goal is to find a way to stop blaming myself for not using the ambu bag faster or better, or knowing how to increase your bipap settings etc.

Forgive me my darling boy for not saving you. .

Its hard to explain - The reason I don't sleep much is just because first, I am use to caring for you through the night, next, when I think of you my love I just want you here with me. I was selfish, because I would have been the mom to put you on a trach - but you told the doctors at the hospital you wanted to come home on your bipap.

I just am finally understanding that you are not here in this world but you are in the next and this is so hard for me.

Sunday, December 4, 2016

December 3rd 2016

Hi sweet darling! Teresa came home this weekend, while busy with her mom's house, it was an incredible visit with her. I'm looking forward to spending time with them in January over your birthday.

I stopped by your gravestone today and put out beautiful red roses and white carnations. I try to stop in every week. I miss you so much.

Tonight was our work Xmas party - we were blessed with good food and a nice night. Truly, they are like a family and  everyone In our art community are considered family. I have made some really nice friends. Its nice being home because so many remember me.

Many blessings everyday! Thank my darling for all you have taught me, I think about all the time and can share really nice videos and pictures on facebook.

Monday, November 28, 2016

Nov. 28th 2016

Hi baby- I know you are in heaven and watching over mommy. That Uncle Gene and Grandpa Mike and everyone we've  known are with you.

However; mommy is here. I have taken more hours at Thriftway and that keeps me busy;  yet I come home and miss my little boy! I'm cooking a turkey Monday thought and all your friends will be here.

I struggle with the day you died; the  bipap settings not strong enough - The pneumonia taking you from me far too soon.

I miss you an cry every night and morning. One day I will not cry so much! I am hoping to go back to teaching soon, but for the moment, you'd not believe how nice people are at the store. I know I promised you with my new job I'd take you to the beach, but I go now once a month and you are with me.

Thursday, November 24, 2016

Your New Video From Comi Con

Thanks to Drew my darling, here is the newest video and what a great memory. I miss you so much!!!! I cherish every day! I don't know what I would do without our new friends at Magic Wheelchair, Star Wars Oregon, and Make a Wish!!

Bryce - You will always be loved my everyone who met you!! Your time on earth is a lasting legacy. I cried so much when I saw this video, but here it is - and now everyone can share this day with us.

Happy Thanksgiving baby. While your in heaven, I know you can hear me. The flowers I put by your headstone are really pretty - You'd have loved to have helped me with that arrangement.

You were always my inspiration in life - before you were born, when God gave me you, and even now.

Monday, November 21, 2016

My Darling Bryce

My Sweet Darling Bryce; I keep this blog for you my love. You are in heaven now! What your daddy said was so true: "what you could not do physically, you could always do with your mind!" I love you baby. I miss you so much. I wish I had the medical training in the end to give you more life.

Yet; we battled; as Jedi's you and I, this terrible disease! All the love you gave me; I gave you! As our friend Fawn  said "the love  I gave you, and the you gave me is the only comfort we have because you walk and run with your friends in heaven now, and I am here and I cherish all our memories.

1 in 40 adults are recessive carriers of this disease. It was not known to the world until 2013 and after you were born.  In 1996 they discovered SMA and in 2008 they started to find a cure like with ALS the neighboring disease. Cure.SMA finally has found a drug my baby boy; and after you passed into heaven this drug has offered a possible cure that will be available and is now approved by the FDA. Your friend Magdalena is one who is getting this cure. Your are an inspiration to all! Doctors from Thailand met you at the hospital and were inspired. You and I my darling boy have shown the world what you can do with SMA-1 and how long you can fight!! Research and donations to Cure SMA will create a cure. Many of you friends have donated to this cause!

I cry every day in joy and sadness as you are with God and all you friends. I am sorry you got pneumonia; the doctors said that would be our last battle. Yet, you fought so hard; you told the doctors you didn't want to be reintubated and that you wanted to be on bipap. I am so sorry I could not make your bipap settings stronger in the end.

4 months

I know in my heart that daddy and I did what you asked, you came home an additional 2 weeks; with me, grandma, and you spent 4 days with daddy and your 1/2 brother baby Asher. I am so proud of you.You  were so excited and proud to be a big brother!! One day I hope to have another child just as you asked; you will always be the big brother!

Our final days and hours are with me forever. Putting the Charlie Brown Halloween stickers on the window- saying hi to your Tie Fighter - then you said, "I'm tired mommy." I followed every medical protocol that I was taught. Fred and Jim and all our neighbors were with us baby. Your eyes opened and then closed, you breathed, but we could not give you enough. You were in peace the whole time we tried to get breathe into your lungs.  Then the paramedics arrived. They and we did all we could do my sweet sweet boy! Apparently there were complications for the EMT's to intubate you. I don't have answers Bryce - I wish I knew why you left this world - I would have gone to the ends of the world to keep you alive -

Dr. Murphy said we did everything we could do, but the pneumonia weakened your lungs and there were unexplainable complications from the nearly 4 weeks in the hospital that had caused ongoing oxygen stamina, stomach pain, internal organ failure, and the final collapse of your lungs.

Thank you for fighting till the end my little Jedi Warrior . I am so sorry medical technology was not there for you.

Your mom was never ready for your departure to heaven. No parent is ever ready to say goodbye to their child. You have always bounced back after every hospital stay and respiratory failure. There is no fault here other than your lungs and complications to pneumonia with an SMA-1 diagnosis.

 Your pulse came after 90 min at Meridian Park Hospital. They put you on a ventilator.

After arriving to Doernbechers, Daddy and I were there holding your hands and Grammy and uncle Shaun held each foot. When  Pastor Paul who baptized you and then gave you a final blessing, we turned off the machines. Forgive us sweet boy - we wanted you to be in peace - the doctors said that 90 min caused an unsurpassable amount of time for your brain to have survived.

I know you  were there - but given the time and your medical status, we felt it best to turn off the ventilator. After daddy asked Paul to bless you, the doctors turned off the machine. Then, I know you heard me talking to you in those last few moments; the tear you shed my darling on you right side was evidence you were listening to me and we both had a moment to say goodbye.

Oh how I wish we could have saved you my darling. But I know in the hospital you chose and spoke to doctors that you didn't want to be tracheid. Your words were clear to all.  I am so proud of you; but  miss you so much. I'm so grateful that you came home and spent you final days with your family.

You are gone only in this world because I will see you again. Paul said, when you took your last breath God was there waiting for you with all you mom holding your hand, you had your Pikachu in your arms and your Darth Maul figurine, and all your family, Make A Wish, Magic Wheel Chair and Star Wars team loving you and praying for you as you were walking through the valley of death into the light of heaven. I know you befriended Dart Maul because you knew he'd keep you safe until heavens gate. I just didn't realize you were so smart about this until after you passed.

We didn't know till after your passing that you had already prepared yourself; from asking me to take yourhospital bed to the beach where we were with Aunt Teresa this summer - and despite your laugh and saying its ok mom, the bed can't roll in the sand - you knew the days were short. 

 You conquered all my love! You befriended the dark side and the Jedi's! Darth Maul's role for you as what I understand now, is that he was you friend, your protector and guide to heaven!

Until then my love, I am here fighting SMA and supporting your friends at Magic Wheelchairs; Make A Wish, and Sofia too, and all those with SMA.

I love you my darling. Everyday you are with me. I will be a teacher again, I will travel the world again, I will return to Montana, I will see Bryce National Park along with the Grand Canyon and you will be with me on every adventure. Your Lego guys, Minion friends, and Star Wars favorites are my friends now too. They will be in every picture and be part of my life forever. They comfort me at night.

Bryce - you were always the light that shined so bright. I cherish every memory and can celebrate your memories with all those who knew you.

I love you very much my darling boy. You were and are my best friend! My angel! You gave me the greatest gift of all; motherhood and you have changed my life forever!!

Sunday, November 20, 2016

Tie Fighter: My little Jedi - Padwan Bryce

September 11th 2016 Bryce's Last Make A Wish was granted to fly his Tie Fighter!Thank Make A Wish, and Star Wars Oregon for the greatest day ever!!  Thank You Jen and Jim, Rick and Pauline! Thank you Star Wars Oregon  501st Legion! Thank you uncle Shaun and cousins Emerson and Easton for this wonderful day!!!

Thursday, October 6, 2016

Summer days

Our summer has been so special!  I've had the chance to spend this year with Bryce and training more home nurses. It's been a joyful summer filled with love and laughter.
Loving our gifts from Star Wars, make a wish, and our friends. Going to the park, eating shaved ice,  to driving around memorial Park etc.