Walk for CYSTIC FIBROSIS

posted by Frankie and Jess Show - 

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http://fightcf.cff.org/site/TR?pg=entry&fr_id=6680

Dear Bryce

     As you sit in heaven I know you see how we are doing.  So many miss you everyday.  I kiss your pix everyday before I leave the house.  You are on my mind and always in my heart.  You are in the music I listen to. You are always all around me and I feel you when I am down.  I hear what you are saying.  You are telling me that you are ok and things are good.  You are telling me that you are running and playing basketball.  You are telling me that you have fished with both sets of grandpas.  You are telling me you are riding your motorcycle full speed to your favorite Motley Crue or Sixx Am music.  You are telling me mom I am ok and I love you.  Dont be sad.  Know I am always with you and will always protect you. Know that I have found Blaine and we are having good conversation and laughing a lot.  Know that I am not in pain and I can breathe and my body is perfect now.   Know that I know you loved me.  Bryce I do love you!

You were my first born son.  Your dad and I were so excited when we found out we were going to have you.  Your sister was elated when she knew she would be a big sister.  Your first few months were hard on you.  No one could tell us why you were not growing and why you were not holding your food.  It was a nurse at the U of U who had thought you were a CF baby from the start and it was that nurse who started them looking in the right direction.  As your mom I never left your side.  I stayed at the hospital for days and days and would only leave to shower and do laundry.  Your sister Brittney was the one who had to be moved from neighbor to neighbor, but she did it with a smile because she loved her little brother and wanted him to come home.  When I got your diagnosis I had to call your dad and tell him.  I was so terrified and sad, because no one really knew what your outcome would be.  But your dad and I did.  WE said at the beginning we would not keep you in a bubble and you would be treated like any other kid out there. Sure things would be different, not all kids had to get a breathing treatment not to wheez or take pancreatic enzymes so you could digest food, but who cares we were going to help you be the best you could be. 

Your big sister Brittney loved you  so much.  You were her everything.  She took such good care of you and would always be your protector.  So many times she would say not that she wanted you to be healthy but she wanted to be sick like you so you could be the same.  Brittney and you had such a special bond.  I know how much you looked up to her for her wisdom and strength and I know she looked to you.  You had unconditional love for her regardless of what was going on in her life and she felt the same for you. 

You loved music from day 1.  Your dad made sure to that.  He had you jammin and rockin to the heavy metal bands of the 80's.  You would bounce, sing, play your guitar and eventually play the drums to your favorite bands such as Motley Crue, Kiss and others. 

Your dad also made sure you knew all about sports especially basketball and the Utah Jazz.  I am pretty sure that you are looking in from time to time to see how they are playing and you know they are in the play offs.  Your dad also made sure you knew about fishing and the mountains and enjoying the outdoors.  You loved to fish or just get away.  Your dad also made sure that you knew about motorcycles and you had your first motorcycle at age 5.  Your dad would make you practice in the back yard with cones before we would try the dirt hills.  You knew how to ride a bike at a young age so going off jumps would be nothing new to you.  You loved to go to the cabin with gma Retta and Gpa Doug so you could fish and ride the three wheelers, and of course have gma feed you because you were always starving. 

You had so many friends and family members.  Aunts, uncles, cousins, grandparents who just loved to be with you

When your brother Beau came into the picture you were just 3.  Beau had Cystic Fibrosis from birth and was in the hospital for a month in ICU before he got to come home.  Oh my heart was torn.  I wanted to be at home with you and your sister but I needed to be at the hospital with Beau.  You would come to visit and you would always kiss the top of his head.  You loved your baby brother so much.  I know you loved him by the way you would try to get him out of his crib to play, or you would cover him with newspaper when he would cry, or you would wrestle with him like your dad did with you.  Having two kids with Cystic Fibrosis was normal for your dad and I.  Brittney didn't know anything different.  She would help you both do your treatments while you watched heavy metal videos.

You were always concerned about your hair like your dad was.  When you were 2 you would not let Robyn cut your tail because you wanted to look like a rocker.  You would play your red guitar for hours while watching dads music videos.  Your dad would crank the music and Brit you dance, you would play your guitar and Beau would dance or bounce to the beat.  What a team we had.

Bryce you meant so much to so many people.  You were everything to your nephews Dominick and Dillin,  They loved to hang out with you.  They knew you would tell them something good.  You helped them know about Motley Crue, basketball and you were kind to them.

You used to wrestle and box with both your brother and sister.  Oh how this would stress me out but you were being normal and that part I loved. 

You were in the hospital alone many many times.   You grew up so fast  you knew the ropes and took them face on.  You were so strong.

You had many friends on this earth, Nick, Kalob and our family friends Aaron, Jos and Kids. We were lucky.  We were part of an instant family with the Fishers from day 1.  How easy it was with all of us You and Aaron with your Motley Crue, we all loved to be outside and play basketball or any sport that kept us together.   When you met Aaron over 22 years ago you guys were a match.  You found someone who loved Motley Crue as much as you and your dad did.  You also found a person who would tell you from the time you were around 5 that when you are a little older you can get a tattoo  like Tommy Lee.  Aaron told you that for years.  Who knew you would come home one day in July with a long sleeved shirt one and hide a tattoo= Terror Team. You eventaully had many tattoos that had a special meaning.  I always wantd to tell you that you were brave for getting all those tattoos but you were brave for many many more reasons than that.  I loved when you were younger and all of you kids would ride your bikes when I would walk at night.  You would also play hard when we got together with friends to play sports.  Even though you would cough and cough you wanted to be with us and be on our team.  We would all look at you and wonder how you were so strong.  How you could keep going.  Even though life was tough you kept going and kep smiling with that cute smile and deep chuckle.

You made some wonderful friendships and had an impact on every life you touched.  You found Amber, who had Landon and you treated him just like he was your own as you did when your pure joy entered the world as Everlee.  You were a great role model to them and showed great strength.  I am sure Landon loved all your basketball stories and all the times you did things with them.

Bryce you showed love to so many people.  You were loved by many.  My greatest thank you to you was when you told me that Mike was a really good guy and I was really lucky to have him in my life.  I had made some not so great choices in the past but you always told me, if they are good to you and good to me they are good to keep around. Mike was so grateful to have you with us,  All of you kids made him feel welcome and I knew he would love you and he does.  Mike will always treasure the Jazz game and the talks you two would have. 

Bryce your life here was too short because of Cystic Fibrosis.  I would have done anything to take that pain away   from  you  and your brother.   The pain you went through was something no person should bear.  You held on as long as you could.  You held on for us.  I will always be grateful and humbled by being your mom.  I feel honored to be the one who heard your first cry and held your hand on your last breath.  My heart will never be the same.  Brittney and Beau are trying to be strong.  They are both great people  because you were their brother.  You were the one they looked up too.  You were the one who gave them strength, you were the brave one.  You will never be forgotten. I am so lucky you had your entire family and friends with you your last week of life.  What a family you have,  Two sets of parents, many sets of grandparents and many aunts, cousins, uncles, friends and loved ones. So many loved you. Your brother, sisters and nephews.

Your last month was the hardest month of my life I thought.  It doesnt even compare to what we have lived that past year without you.

Bryce just know we were proud of you always.  You had a great heart and wanted to fo the right thing.  You were dealt a set of cards no one could play. 

You are always in my heart and always with me and I am so happy I got to be your mom.

love mom

 

Please donate to our team  Bryce Crue

Anything will help and I know this will help find a cure for this disease that has already taken so many lives

No parent should have to lose a child at any age.

Let's start now....donate today  Team Bryce Crue

thank you for reading My Great Strides Story

http://fightcf.cff.org/site/TR/GreatStrides/128_Utah_Salt_Lake_City?px=3556718&pg=personal&fr_id=6680

Frankie and Jess

Frankie and Jess

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