Photographer: Michelle Gifford Photography
Meet Julie. I met Julie more than twelve years ago. She was my one of my church youth leaders and was there for me during my formative years. Back then, I knew she was amazing. Her faith and dedication were unmatched. It wasn’t until after I left my small hometown to go to college that her faith was really tried and she has come out triumphant. When I think of resilience, grace under pressure and strength in adversity, I think of Julie. She has overcome tragedy after tragedy and with faith in Christ has found a way to turn her negatives into positives. Now, she speaks around the country and has a blog about her trials and the things they have taught her, inspiring others to have faith in Christ. Well, let me let her tell you her story.
In Julie’s words:
When I was 18 years old, in January 1996, I went on a first date with Jake Jorgensen, the man I would marry, and the love of my life. We fell in love instantly and had a great life. In the first 7 years of our marriage we experienced many ups and downs. We had 3 young boys who were all sweet and amazing. We moved several times, but built our dream house in 2002. Jake ran a cattle ranch that he loved, and I lived my dream as a stay at home mom. Jake worked as a mechanic in a coal mine in addition to the ranch to make that possible.
My best friend and his wife were standing on my porch. They asked if they could come in…(no this isn’t happening to me, don’t let them in). I must have let them in though, and they made me sit down. (Don’t say it, don’t listen, make them leave) I hear my friend say, “There’s been an accident at the mine and… (this isn’t happening, this is not my life!!!) and Jake didn’t make it”. Now my thoughts became screams as I sobbed uncontrollably. “No! Where is he? Take me to him right now! There has to be a chance! He has to be ok! I know he is alive! Just take me to him and he’ll be alive. PLEASE PLEASE take me to him!” They didn’t have any details or know where he was… they just knew he was dead.
We took Cam to many appointments with geneticists to find out what was wrong. The doctor ordered a special blood test and a week later, this time 3 days before Christmas we were told “Cameron has a genetic disorder called 22q11.2 deletion syndrome” (also known as DiGeorge Syndrome). This is a syndrome where part of the 22nd chromosome is deleted. In the next several weeks we learned that Cameron has 3 minor heart defects, 1 being potentially fatal that we will monitor his entire life. He was born with only one kidney, that is smaller than the Doctor would like and has a couple issues, that will also be monitored. Low immunity, over-all low tone, chronic fatigue, chronic rashes, and possible learning disorders. PVNH usually causes dyslexia and 22q causes issues with numbers and problem solving, so he is taking a hit from both sides. There is a 90% chance he will eventually develop a seizure disorder. His most recent EEG came back normal again though:). Cam had to have a sleep study done and they found he had sleep apnea. We removed his adenoids and tonsils to hopefully help his chronic fatigue. The surgery went well, but I’m sad to say the fatigue remains a big issue for him. It is likely that he will continue to have new issues come up through out his life.
The good news? Cam has beat the odds in many ways and his speech continues to improve. The mortality rate for 22q kids is extremely high in the first year, and a lot of 22q pregnancies result in miscarriage. He is the happiest, sweetest little boy I know. I can’t get enough of him. I am grateful everyday that he is alive.
My name is Julie and I see the miracles in my life.
I started realizing I could break under the pressure of being a widow, in a second marriage with 10 kids, not knowing what our employment situation will be or how we will get a new insurance to cover Cam or Jordy, and having two kids with special needs, on top of every other “normal” problem that most of us face everyday. OR, I could look for every blessing, every miracle, and every ounce of help I receive from God and my loved ones.