There is a story that circulates throughout the world of special needs and medically complex children. Summarized it goes like this: You plan for a trip to Italy with all of the trimmings-visiting the Vatican, eating pasta, maybe a gondola ride through Venice. You make all of the preparations and get on the plane, only to have the plane land in Holland. Holland is beautiful with its tulips and windmills and there are canals in Amsterdam just like in Venice, but it’s not Italy. It’s not what you planned for. You can either complain or make the best of it. This is an excellent metaphor for our journey. Nobody has children expecting them to be sick. You make plans; have expectations and high hopes for the future. But in an instant, without your permission or input, the plan gets changed.
When my daughter Siobhan (pronounced ‘Shi-van’) was born, her stubbornness and strength were evident from the get-go. She was five days late, weighed over nine pounds and had no interest in entering this world until the doctor forced her out. That was our first indication Siobhan was special and that her unique qualities would be a huge benefit to some of the challenges that would come her way.
When Siobhan was four years old our family moved from Colorado to Utah. There were many reasons this was necessary for our family, but I’m positive that one of the reasons Utah was the place for us, was the medical care that Siobhan would need. At five years old, I noticed Siobhan’s right knee was very swollen. However, she wasn’t in pain had no apparent injuries. After watching it for a few weeks and having many people tell me not to worry because ‘she’s a kid and kid’s play’ and ‘she was probably doing something that she doesn’t want to get in trouble for’ a doctor appointment was in order.
This is one of the many tender mercies that let me know our move to Utah had a purpose. Through a series of events that I can only accredit to divine intervention, we were able to get into see a doctor who knew exactly what he was looking at when he examined Siobhan’s knee. It turned out the inflammation was caused by Juvenile Idiopathic Arthritis. Not only did she have it in her right knee, but also her left knee and her right ankle. With that, a treatment plan was put in place, followed by another new treatment plan when we met with a pediatric rheumatologist.
When Siobhan was diagnosed, there was a lot of unknown. In an effort to understand the future, the new normal and all that Siobhan was going through, I threw myself, and by extension Siobhan, into volunteer and advocacy work. We did walks and 5ks. We even traveled to Washington DC to meet with lawmakers regarding relevant Arthritis research legislation. In the midst of all of that, Siobhan was on pills, supplements, shots and has had steroid injections three times. Siobhan has to deal with a disease that most adults don’t understand. No, it’s not the same as your grandma’s aches and pains; while that pain is real, it’s not the same. No, Siobhan’s arthritis isn’t something that she can ‘walk-off’. Unfortunately, we don’t have any idea what caused her body to develop Juvenile Idiopathic Arthritis other than conjecture. We have no cure. Her body is literally fighting against itself.
I often get lost in the numbers, facts, and statistics, when dealing with a chronic illness and being heavily involved in advocacy work. There is a bigger story to be told, a personal story, the face behind the number, and the person behind the statistic. Those pesky statistics are very important to the success that Siobhan has had though. There are approximately 300,000 children in the US who suffer from Juvenile Arthritis, but only about 200 pediatric rheumatologists. Hundreds of kids routinely have to travel hours to see their doctors. Sometimes it involves a plane trip to another state, which happens quite often. One of the many tender mercies (that I alluded to above) is that we happen to live close to a hospital that has four pediatric rheumatologists, and they are all amazing!
No child deserves to be sick, chronic or otherwise. Siobhan was dealt a hand that very few, if any, of her peers will have to deal with or even understand. As she enters her teenage years and deals with all of the teenage ‘stuff’ that comes along with it, she has something extra to deal with that is always there. There is always the fear that arthritis could flare up in other joints. We’ve seen that happen in recent years as it has moved beyond her knees and ankles, and now affects her right hip, left shoulder, and jaw. While she is in remission right now, there is always the chance that she will wake up tomorrow without the ability to walk. It has happened before. She could experience awful side effects from her meds; been there, done that.
With all of these challenges though, Siobhan has developed a strong sense of empathy and acceptance for those who are different than her. When someone is struggling, physically, emotionally or socially, I can always count on Siobhan to step in and try to help make the situation right. Through this trail and perceived weakness, she has been made strong, enviably strong. In the Book of Mormon in Ether 12:27 it says that God will ‘make weak things become strong’ and I can truly say that this has been manifest in Siobhan.
Through each stage of her experience, Siobhan has grown stronger and has been blessed by those that surround her. Ultimately she has been blessed with strength from our Heavenly Father. When asked about her experiences and all that she has gone through over the past 8 years, Siobhan had this to say:
‘I’ve been through everything. I even went gluten-free for years. However, my family was always there for me. My dad would carry me up and down the stairs, my mom put in so many hours dedicated to helping find a cure for Arthritis. My siblings had little to no idea what was happening at the time, but they supported me in any way they could. One of the things that helped me through it all was all of the priesthood blessings and prayers made out to me to help me feel better. Many neighbors came over to help my dad give me priesthood blessings. Many people have helped me and because of them and my family, I have gotten through every obstacle thrown at me.’
We are very blessed and extremely lucky that Siobhan has a full life without too much holding her back. She is able to swim competitively and has played volleyball, but it has not been without extreme effort. I would love for Siobhan to have a life where she doesn’t have to worry about giving herself a shot or multiple doctor appointments with blood tests and x-rays and the worry that a flare-up will come out of nowhere freezing her joints. That would be a proverbial trip to ‘Italy’. And maybe one day she will. But we were re-routed to ‘Holland’ and you know what? It was hard and disappointing at first, but the lessons of compassion and empathy she has learned and the beauty we have witnessed through service, healing, and faith are immeasurable. Our hearts are full of gratitude to Heavenly Father for trusting us, and mostly Siobhan, to go through this trial and to come out on top, closer to the version of herself He has in store for her.