My oldest son, Julian is now 18. He has severe Hemophilia A that is very well managed. But when he was little he had an inhibitor and his father and I had to access his port for daily infusion for over 2 1/2 years. That’s not what happens to a “normal” kid.
When his port was taken out, switching to peripheral sticks (IV with a butterfly needle) was traumatic for him. He fought so hard that the kitchen table moved from one side of the room to the other. That’s not what happens to a “normal” kid.
Things finally settled down, he learned to infuse himself peripherally and life has been good. With only a few significant bleeds his hemophilia is well managed.
What a lot of people don’t know is that he was tormented by bullies and assaulted in high school. We even had to take him out of public school for a while. Living as a pastor’s son was not easy for him in a small town and he struggled because he loved music and wanted to be on stage.
We finally moved to the city and he was back in public school without any bullying. As a three- time All-State Choir member he was part of the choir and drama programs and even starred in “Shrek: The Musical”.
Hemophilia was good for him but not his brother. Julian saw his little brother suffer with complications from hemophilia and was often called in to help his father and I out. He saw and heard his brother scream in constant pain, hospitalization after hospitalization, plans and vacations cancelled and life so often in chaos. But he was always amazing at going with the flow.
To our surprise, Julian was gifted a wish by the Make-A-Wish foundation right before his 18th birthday. He struggled with feelings of unworthiness. But when we told him to look back on the issues he had faced it completely made sense. Make-A-Wish is not just for children with terminal illness, but chronic, life-threatening illnesses, which is a reality for him and his brother.
Our family just returned from a wonderful trip to New York City where Julian was invited to sing on the stage of the Ambassador Theater, where the musical Chicago is playing.
The welcome we received from the cast and crew of Chicago was amazing! I was absolutely speechless. The stage manager, David Hyslop, met us, took us on a tour backstage, introduced us to the musical director, Scott Cady, who then ran through Julian’s music with him (and the man can play some mean piano), and while Julian was rehearsing, several members of the cast and crew came out, including Jennifer Nettles in her pin curls, Carly Hughes (playing Velma Kelly) and they came up to meet us, gave us hugs and made us feel like it was the kind of family reunion you don’t dread 🙂 Just real, normal, compassionate, loving people. People who truly took time to love my son.
And if you have children you know that there is nothing more meaningful than when someone loves your child.
After the show, well, why don’t you take a look and a listen!
The extra special part is when Carly Hughes told Julian she knew the composer of the song he was singing and after Julian sang, Carly came up to Julian and read a text from Jason Robert Brown saying that he wished he could have been there 🙂
How cool was that?!
My son’s passion was ignited that night. His love for music and the theater was evident as he was surrounded by people who had the same love and passion just like him.
I know God exists.
I’ve seen him in my life in numerous ways and times in my life, but this night at the Ambassador Theater, we were surrounded by people being the hands and feet of Christ like never before. They may have not even realized what they were doing, but God used them well. They were encouraging him as they cheered him on, staying after the show to be his audience, giving his old mom a hug through her tears and even loving his little brother.
It was the night of a lifetime, not just for Julian but for all of us.
We all shared in a moment to bring joy to my firstborn.
All of the yuck he had been through was redeemed at the Ambassador Theater.
From the bottom of this mama’s heart all of my love and blessings to the cast and crew of Chicago and the Make-a-Wish folks in New Mexico and New York.
You touched our lives deeply.
