We always feel blessed to be part of any event that Primary Children's asks of Alex. These are things that children his age would never ever get a chance to do. It is very hard for our kids to have these extreme medical diagnosis, and in the middle of crisis it is really challenging and frustrating, but when they are healthy and we get to participate in so many inspiring, up lifting and fun things, it really really makes a difference. It alleviates the burden of worry and lets us hope a little. As Alex has gotten older, he has developed a more mature approach to telling his healing journey. The crowds have also changed. It was a pleasure to sit with Sister Gail Miller, Sister Brigitte Madrian who is the Dean at BYU Marriott School of Business, also her hubby, Brother Dave Madrian. We got to be seated near a dear friend Ms Katy Welkie CEO of PCH, and Dustin Lipson who is the Hospital Administrator. Many folks from NAC and spouses. The dinner was fantastic, a yummy salad followed by a chicken dish and cake. Alex has very little fear anymore for public speaking. I really admire him for that.
This is what he said.
-I am happy to share my story with you tonight, as well as my gratitude to everyone who has made it possible for me to be alive.
-I know firsthand the worries that a health diagnosis can bring and the bravery and strength needed to survive it.
- I was born with just half of a functioning heart. I have lived through strokes, an abscess removed from my liver, and over 50 total heart surgeries and procedures--including four open heart surgeries and a heart transplant.
-I take medication daily to make sure my body doesn’t reject my new heart, And I am going to have to do that for my whole life
-I don’t remember much from those early days of surgeries and hospital life
But I do remember at about six, my heart was sick and giving up and I needed a new one.
- I was listed and waited and waited and waited.
-The thing about waiting for a miracle like mine is, It is a really really hard day for someone else.
-My donor family’s decision was an act of love and compassion.
- While heart transplants are certainly miracles, there are loads of things to maintain. And because I was born with a heart defect, I have had a very tight relationship with everyone at Primary Children’s hospital, where I have receive all my medical care.
-Doctors, surgeons, nurses, Cleaning staff, techs, nutrition services, and folks at the lab.
-I have been seen by over 20 specialties. • But the amazing thing is, they’re more than caregivers. They’re my friends. ---One doctor and I connected over our love of gummies. We even had a contest to find the craziest Gummies to give to the other person. Did you know that there are anatomically correct gummy hearts? Cool Huh?
-But my favorite parts are the behind the scenes or places that help me feel happy, safe, and motivated to get better.
-Those places are……. the play rooms, the new teen room, a special tour to the helicopter pad and life flight helicopter, I have seen the basement of this Eccles building, Sophies music room, the Utah Jazz room and the pirate ship room (those two are for procedures) Even the nutrition rooms on the recovery floors (Which are cool because that is where you find all the snacks and slushies), I have been to the Riverton location’s doll hall, and I am helping to give back a little by making the new Lehi location, Teen friendly, as a part of the Youth advisory council.
-One of the incredible things about Primary Children’s Hospital is that when I’m with them, I know they care for me as a person, and I know they will do everything they can to send me home safe and in the best health I can be.
-I am just one of thousands to whom they extend the same care, compassion, and dedication.
- The Heart Center at Primary Children’s Hospital saves more than 1300 lives each year through cardiac interventions.
-Unique places, people, and innovative procedures that save lives. THIS is what separates Primary Children’s from other hospitals.
- Now that’s something to be grateful about. And it’s so important to take time for gratitude.
-I’m thankful to those individuals, families, and organizations who have donated funds to support the hospital’s mission. To all of you, I say thank you for helping me, and thousands of other children, to be treated. Thank you for giving us a second chance at life.
-Also, Thank you for showing up tonight, for thinking of others, for having a special place in your heart for this Hospital. You are making a difference in my life, and in the lives of so many families like mine.
(it's typed in a way that he can present, not with correct punctuation and such)
Ms. Katie gave him the coolest Cotopaxi backpack and some gummy candy. She knows he well.
I got to take home one of these pretty floral arrangements. They know me well too.
Friday was a big assembly at our school. This kids did a great job helping to raise funds for the PTA. I am so thankful. Our school community has really stepped up this year. Parents, students, teachers and school staff have done so much to make our school really great. We had a very fun assembly to celebrate.
Ms Adams was duct taped to the wall. Such a good sport.
Students got to silly string teachers
Saturday Jeff rode in the St. George Century with John Jones and Nic and Marti Dumas. 106 miles. The weather was so fantastic and he got a bunch of personal records (PR's) Grandma and Papa Clawson watched CrAsh; Eden and Alex had events at home, and May went to a birthday party. That meant I got to sleep in, go wash the car, thrift shop, and geocache all by myself. It was bliss. Proud of these guys for finishing this ride and doing so well. It amazes me Jeff actually likes to exercise for 7+ hours.
Ry's Missionary plaque is up!
Monday I took May and Asher to the Zoo. May swears she hasn't been when she could actually remember. The weather was perfect right before it has started to get yucky this week.
Tuesday we did some major cleaning, and have been cleaning out and organizing like crazy. My list is never ending. Once I get my list in good shape, meaning I have the majority done, then I start all over working on the top things on my list over again. Clean out the fridge/freezer was checked off. I took out every shelf and bin and washed them. I defrosted the frozen bits in the freezer and got rid of the bag of Totinoes that had exactly two very frost-bitten pieces left in the huge bag. The Trader Joes trial items. The popsicles the have burst open and melted a little in the freezer and took out nearly a handful of peas and corn that fell out of the bags. Yuck!
Also on Tuesday, I took my crew to get flu shots and Covid boosters. We have all been feeling the effects of our bodies trying to work with that whole thing. It is so important for our family to have these because of having so many kids with health issues. Though not fun.
Wednesday we permed Alex's hair. I was already perming another guy and I wanted to use the solution up. He has been asking for a while. I was afraid to use a red rod on him, so I used gray. It should look pretty awesome when he can wash it and have it be more wavy. Regardless, he is killing it, in this pink butterfly cape.
Ms. Katie gave him the coolest Cotopaxi backpack and some gummy candy. She knows he well.
