Showing posts with label Duchenne Muscular Dystrophy. Show all posts
Showing posts with label Duchenne Muscular Dystrophy. Show all posts

Monday, November 11, 2013

07/22/1997 ~ 11/02/2013

My sweet baby brother passed away on November 2nd, 2013 at 3:20 am. He was the light of my life. Luckily, on November 1st, 2013 before I left his home I was able to read a sweet letter from a family friend. This letter had a lot to do with the after life. Jt told me he was no longer scared. That even though he was going into the unknown, for him, he knew it would be beautiful. I wanted to stay, something was pulling me to stay, but I left around 8:30. I was a fortunate person to be able to sit and hold his hand. I was able to tell him how much I loved him, how much I looked up to him, and how proud I was of him. I told him he was the strongest person that I knew, and he thanked me, so humbly. Jt was very emotional with me that evening, which surprised me. Usually he tells everyone to be strong, but as he choked back the tears, he told me he loved me. He asked me to hold his hand, and we cried. I was able to have the last deep conversation with my brother, and I will always be thankful for that. 

As the viewing ensued, emotions were raised, and many a tear fell. Jt was loved by EVERYONE that he met. How amazing is that? Many talked, including grandma, mom, aunt Nonie, Jessie, Trevor, Noah, many friends from school and myself. My sweet students from Hillcrest drew/wrote me cards. I broke, and that was okay. I needed some sort of sign that I needed to get back to Hillcrest. Dres Anderson, and Reggie Dunn came to his viewing as well. When they walked through the door I broke down so hard, because I knew it was what Jt would have wanted. I was separating Dres and Reggie from football, and seeing them in their true light. I rushed up to Dres, and he stepped back quickly. I hugged him, and didn't want to let go. I was SO happy he was there for Jt. Jt was wearing a number 6 jersey, which is Dres' jersey number. He felt honored. 

Tonight was Jt's Remembrance - at Hillcrest. There was a lot of food, including dessert. My brother Chris was there, and that was really nice. It was like a breath of fresh air. He also came with my new friend Annika. My friend Alexis came with her mom, and her baby. Matt and Stacey performed Who You'd be Today - by Kenny Chesney. Which was amazing. After which my mom spoke a little bit, and then my grandma, Rickie, cousin Danny, aunt Mare, Ryan, myself, and a few of his friends spoke. After we let the balloons go for Jt in Heaven his friends Nate Orchard, and Jeremiah Tofaeono (J.T.) stopped by and watched the picture video that Rickie had put together. They hugged my mother and I, and once again I found myself separating the football aspect, and fell in love with their kindness. They are true gentlemen, and were so needed in the moment that they were there. Jt will definitely bless them for their good works.  

My mom talked about how Jt's everyday hat was not in the stuff we had packed, but yet was in my car ready to be placed out to show. Which is proof he is here with us still. Then, many of his friends talked about how Jt probably saved lives by being so loving and kind toward everyone. Also, one of his girl friend's said that one of her girl friend's wanted to ask Jt to a dance, but that she was scared of rejection. Little did she know that Jt was scared of rejection as well. 

I can honestly say that I have learned a lot on how to be a better person by knowing Jt. As his sister I never saw these sides of Jt, because well, I'm his sister. But, hearing of these stories makes me love him ten times more than I did before, and I loved him a lot! Jt was an amazing human being. To be so perfect, that Heavenly Father wants him back early, is amazing.

Bro, I cannot wait to see you again. Please get paradise ready, and make it to where the Utes win every game. Only if you have some extra time! Watch over those of us who need you most. I love you, and you're always welcome in my pad. Lord knows you never came to hang out when you were with us. Please make your presence clear, that would be legit AF. 

God knows how I miss you. All the hell that I've been through, just knowing no one could take your place. ~ You're always in my heart, never forgotten. Rest in Paradise 


Balloon Bouquet 

The set up at Jt's Remembrance.

Letting the balloons free, to fly to Heaven. 

All of our sweet notes for Jt in Heaven. 

Balloons sure do know how to put a smile on my face. 

Do what makes your soul shine.

Thanks for the insight. Keep it coming. Love you, times infinity. XOXO

~ Sissy


Sunday, October 27, 2013

Keep Calm and Fight Duchenne Muscular Dystrophy

I have heard J.T. referred to as John far too much the past few weeks. John is my great-grandfather's name, my grandfather's name, my uncle's name, and my brother's name. But, J.T. doesn't go by John. Typically we correct people on his name, but it's hard for doctors with all their patients, to call someone by their nickname. After a week of them being around at Primary Children's Hospital, they soon all called him J.T. 

J.T. has been my rock, although he may not know this, because I've never told him (that I can remember). He is the reason I am the person that I am. Granted, those that helped raise me, my friends, my past, and present experiences, etc. have a lot to do with why I am the way I am, HE is the biggest reason. I am a Social Worker because of him, I am a Program Director working with people with disabilities because of him. I am wanting to do Special Education because of him. EVEN though he wants nothing to do with the SPED. he is my reason. 

God sends us special people. I have seen him change people, just by them knowing of him. He is an inspiration to all the lives he has touched. J.T. is the reason so many of us in the family have patience (HEY! Imagine the patience some of the adults had before he came along ;)). It is the reason so many of us in the family have a deeper relationship with God, and Jesus Christ. It is the reason so many of us have a deeper love for football. It is the reason so many of us have more grey hair. It is the reason so many of us have more migraines. Okay, back on track. What I am trying to say is that we ALL love J.T.!!!

At this point, I find it my duty as his big (not that way!) and oldest (not that old!) sister to help him with one of his last wishes. He wants our mother to be able to be home with him. No one can fill a mother's spot, no one. He wants her there, and I want to make that as possible as I can. She has run out of PTO (paid time off) and has no sick/vacation time as she has not been with her company long enough. 

If you would read the following, and help donate, even a dollar or two! Everything helps. Rent, bills, car payments, any of the odds and ends that J.T. may want or need, etc. It is helping out my baby brother, and my mother. They are my loves, my faves, and my family. I want them to both be able to have this time together. If you're unable to donate, pass this on to a friend, maybe they can, or they know someone who can donate! MUCH LOVE to everyone who has been apart of this entire process. Thank you, from the bottom of our hearts, thank you :) 

J.T. is a sixteen year old young man. He is currently in extreme Congenital Heart Failure, because of his Duchenne Muscular Dystrophy. He is a lover of the University of Utah football team, and his favorite player is Dres Anderson. He loves all of the guys on the team, and all of the coaches. If you have any questions concerning football, he is your guy. He has been blessed to have met some of the players, and the head coach, Kyle Whittingham. At this time we are asking for assistance in bringing together some funds so that his mother may be at his bedside, as it is one of his last wishes. J.T. is amazing, and we love him more than words can even attempt to say.
Also please be praying. PLEASE, PLEASE try and help. Thank you. You can donate at Wells Fargo under JT Nimmo or herehttp://www.gofundme.com/4yypgk"