Gerard Update 2018
It takes a quiet day to have enough time to reflect on blessings and Thanksgiving.
Today is that day.
It’s been a little over a year since my last update about Gerard, his health and our family, and there is much to share.
Please excuse any typos or writing tense errors as I’m trying to rattle this off while I have time. Gerard is ten years old. He will turn 11 on December 24, 2018. He is still a very good-natured, sweet boy and is fighting IBD like a warrior. He makes good grades and would love to be able to do more than is possible on any given day, just like most young boys.
Last fall, we moved Gerard to a new school for his mental and physical wellbeing. The school he attended for third grade was fancy and new, a great big building with the latest and greatest technology and close to our home. It was amazing that there were some great Title 1 programs, and his teacher was too fabulous for words. But the bullying on the playground and on campus was unbearable to hear about -and well, Gerard is a sensitive kid who was acting as a “decoy” so his friends wouldn’t get beaten up. Not a great situation. So we moved him and it all worked out for the better. Of course, he misses those friends that he made, but he's easily adapted to making new friends, partly because he's an only child and it's necessary for him.
Last year, fourth grade, was probably our most “normal” year ever because he had access to a nearby teacher’s restroom, and it helped him tremendously to be able to use it. Nothing quite as confidence-building as that. This year marks Gerard’s second year at that wonderful school south of town. Some of his preschool and kinder friends attend there, and it’s nice that he has friends who we can rely on to really care about him. His teachers have been super-understanding, the principal is supportive, and we gave them the educational information that the Crohn’s and Colitis Foundation provides. It’s so very helpful, because the teachers usually don’t know very much, if anything about how IBD works. They often confuse it with IBS – not the same thing at all. Restroom challenges are especially difficult to navigate. This year, I’m happy to report that for the past twelve months he’s had fewer accidents, and his personal management of his disease and coping skills are much stronger. I’ll give an example later. Still, you can imagine how a developing young man can be a little skittish about sharing this personal information.
We are so proud of Gerard for being able to manage his schoolwork (straight A-s), extra-curricular activities, and his illness(es) like a champ. He even entered an art contest and placed last year, as well as his school science fair.
Last December, Gerard had the honor of auditioning and performing in the Ballet West Nutcracker for the second year. He was a party boy, and big brother! This December, he’ll be a party boy once again, and gets to help open the scene. He auditioned for Fritz and got a call-back, but didn’t get the role. He was disappointed and it was fun to see a competitive streak in him. He’ll try again! Three years of commuting to Salt Lake City at least four days/week is quite a sacrifice. But it’s one we’re willing to make because he gets into the car every night after rehearsal and says, “That was great!” And I mean every. Single. Time. It’s amazing. Last year, Gerard was also invited to attend the Ballet West Academy, and he continues to do so again this year, provided his grades stay up. Most people would say it’s just too much considering his health – but ballet has been the one constant - the one steady activity that helps Gerard detox his body as well as his mind from five auto-immune diseases. When I think about all the classes, rehearsals and performances that he’s done over the past three years, I can only say I’m amazed. I’m amazed and grateful at all of us for being able to manage all of it. It’s a lot of travel. His doctors are supportive and they are extremely happy that Gerard has found a sport and art that can transport him to another place that makes him feel happy and like every other kid in the room. In fact, he managed the (good) stress last year by telling his ballet mistress five minutes before curtain call, “Miss Heather, I have to go to the bathroom, and I have to go NOW!” Off he went down the stairs backstage, took care of business, no accident, and returned in time for the scene with a minute to spare. We all were relieved that we could rely on him to manage himself with maturity. Proud Mamma moment! Especially because those new costumes are layers of gorgeous expensiveness. He also performed as "spring" fairy in Cinderella last spring. See the photo.
As for the illnesses, we still struggle some days, some weeks, and triumph others. At one point in time, Gerard was all too happy to share with others regarding his health challenges. Now, however, we’ve reached the “tween” ages where he’d rather not discuss anything that has to do with (bloody) poop or accidents, or stomach pains, or medicines, or getting poked four times before nurses find a vein. He will not share with others about the severity of his food or pet allergies, but he is careful to not eat the foods that he’s allergic to, either. He graciously declines with a “no thank you,” because he hates to not be invited due to his allergies. It happens sometimes that he's excluded. He visibly will scratch his arms until they bleed (eczema and allergies) and he sneezes and blows his nose all through certain outings (church, movies, outings, restaurants)…but he doesn’t like talking about it! And that’s OK.
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| Easter weekend at PCMC |
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| 2018 Camp Oasis last day |
Another great blessing…For a week in June the past two summers near Denver, Colorado at (Camp Oasis), Gerard has had the opportunity of hanging out with other kiddos going through the same things he’s going through medically. Another blessing we can count on for helping him – and us, to manage being a little more “normal.”
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| Everything is dirty after camp! |
In fact, this year at camp, Gerard met someone from St. George and they became pals. Both boys have the same gastro specialist at PCMC in Salt Lake, and that’s something he enjoys…meeting other boys his age with the same struggles and challenges. I’m so grateful to both the Crohn’s and Colitis Foundation and the Ballet West Academy for offering us partial scholarships to be able to afford these activities that we would not be able to otherwise. So much gratitude for just a little piece of normal.
Speaking of challenges, Michael and I are challenged every day by the exorbitant expenses of health care and living while trying to manage under one salary. I’ve picked up 4 part-time jobs (writing, teaching and Door Dashing) – yes, four jobs - and we are still on the ledge. Yes, we have health insurance, thank goodness, but it doesn’t go very far. Gerard’s infusions cost over $6,500 every month, that’s just the medicines, plus all the other standard visits he needs for maintenance. Our insurance covers all but about $2,000/month. And that is a LOT of money to us. It’s hard to explain to people why we can’t just take off and go on a vacation, or attend certain functions in town like we used to, or even move closer to Salt Lake City where his doctors are located. Michael has picked up additional teaching loads to help, so we see less and less of him. Financially, it’s super-challenging. And no, Michael doesn’t qualify for military health care until he turns 65. So thanks to our many military friends who donated to the Go Fund Me account that my friends set up, Gerard has been a happy kiddo at Christmas the past two years, and we have always, miraculously, been able to make payment arrangements for healthcare where we can pay monthly installments. However, having said that, our nonprofit healthcare system has not helped us. We could have purchased a mighty find sportscar fleet by now!
Not even once has Intermountain helped us financially. And it's because Michael “makes too much” and we aren’t on State assistance. And our insurance has repeatedly denied medicines that doctors prescribed Gerard because they aren’t covered under the policy! We spend at least 9 hours every month in hospitals. That's a lot of time.
So where do we get the money? Credit cards, Go Fund Me, lots of late night odd jobs, and the kindness of friends. That’s why I’m writing this update, well before the holidays to thank all of our friends, many of whom we don’t even know because my friend Misty Erikson set up the account and gets the reports.
Most of the children I teach can’t sit and read an entire book because they don’t have the attention span. Why? I don’t really know. If you get a chance, print this out and read it to your children, friends, or share it with someone you love. It’s powerful to share with children how one child’s struggle can be helped by family and friends. That in this world of so much stress and hatred love prevails. Teach your children about Crohn’s disease and Ulcerative Colitis and help them understand that it’s not scary, it’s not something to be afraid of, and it’s not something that is contagious. Teach them about cancer. Teach them about friends helping friends. There are really angels among us. Teach your children that sometimes health is the luck of the draw. We need compassion. We need for doctors and healthcare workers to listen. The system is broken. We feel like Crohn’s allowed us to rely on our friends when we didn’t think that we could.
For years, before Gerard was born, I raised money for thousands of college students to be able to afford to go to school with scholarships. I raised thousands of dollars for professors to get their masters and doctorate degrees. And I also raised money to fight polio for Rotary International and to fight Alzheimer's through the Alzheimer's Association. We donated thousands of dollars to our church for various causes and gave to the United Way and the Red Cross. Now, we can say that our friends helped us to be able to afford to keep Gerard fed and cared for with “health scholarships” and the fortune of going to Mayo Clinic for answers when our local doctors couldn’t help us out. Gerard and I still talk about that trip being the best trip of our lives. We got to receive the absolute best possible care when we had nothing left but the generosity of friends. And through our friend's generosity, we were able to save him. Nothing feels better than that. Never give up.
We’re so grateful to all of you, friends. Because of you, our handsome Gerard is thriving beyond our wildest dreams.
Here’s wishing all of you a very happy holiday season, and a very blessed Thanksgiving.
Much love,
Rebecca Ory-Hernandez (Gerard’s Mom) oryhernandez@gmail.com
And
Michael W. Hernandez (Gerard’s Dad) mhernandez@weber.edu
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| Playing doctor before he comes in |
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