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.
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!!