On Saturday I presented at the Jett Foundation Family Workshop. I wanted to post what I presented as my newest blog. It took me a long time to gather all of my thoughts that I wanted to share with other families but I believe sharing our story helps others not feel so alone. It was a great honor to share our story again.
I’m Jessica Rownd, many of you know me already but I’ll introduce myself and family anyway. I live in a house full of testosterone. My husband Patrick and I will be married 20 years in November. I have 2 sons, Wyatt my 17 year old with DMD and Wynston is 14 and we have a service dog Wrigley who turned 7 a few months ago.
Some of you might already know me and have heard me speak about the behavior challenges we have had with Wyatt. Today, I am not going to give the same talk though I think it is very important and has made me the person that I am today. I wanted to talk about something that I find just as important.
So if you don’t know my story, here it is in a nutshell…Wyatt was diagnosed in 2007 at just 15 months old. I was working as a Pediatric ICU nurse and at Wyatt’s 1 year check up I raised concerns about his poop which led to many tests and lots of roads that led to nowhere. When he was finally diagnosed we could not believe it, we have no history of DMD in our family. Unlike Trina I am not a carrier.
Wyatt really didn’t have any of the symptoms, probably because he was so young though he did have the “football calves” but we just thought we were going to have an LSU football player to watch on Saturday nights. But low and behold it was the tell tale sign of Duchenne. We were given the diagnosis on Halloween 2007. We were sent to a doctor in Texas who told us “there is nothing you can do right now so just go home and love him.”
These words broke me, how could I just go home and do nothing but love my child. I was ready to fight, and find a cure, and raise money, and run marathons, and start a non profit, and help advocate for other families…but in reality I could not do all of it, that was all exhausting I really just wanted to curl up in a ball and cry. Yeah I tried to do some of those things and as I look back on it I see this was just a way to distract myself from focusing on the future and what I thought our life should/would be like. I was grieving but no one told me that’s what I was doing.
So now when I hear of someone’s son or daughter getting diagnosed I try to think of what I would want to know. And something one of the physicians told me when I went back to work has always been in my head and heart.
He asked how I was doing and I began to cry. I told him my worries of the future and explained how Wyatt’s behaviors had been so extremely hard to deal with. I was so tired of thinking of what our life was supposed to look like and tired of being judged and tired of feeling that people were always looking at us when Wyatt had a meltdown. Dr. Finger looked at me and said, “Jessica, think of it like this, for 9 months while you were pregnant and for the past year you thought you had an apple and on Halloween you were told you actually have an orange.” I looked at him and he said, “you still have your sweet son but he’s just not exactly the same, but just like there are differences between an apple and orange there are so many things that are the same. Stop looking at the differences because that is not all that Wyatt is…he is not Duchenne he is still your little boy.”
I wanted to tell you that story because lately I have been thinking about the differences in what my life has turned out compared to our friends’, our neighbor’s and even just acquaintances. Are there times of jealousy of course but when I look at all the things that have happened because of this diagnosis my heart is full. We have met so many people who want to make sure we make the best of every moment. Wyatt has made friends that include him and when he can’t do it like them they have figured out a way to keep him involved.
For homecoming this year, he took pictures with his brother and his neighborhood friends and then had a small gathering with some other friends at our house. No, I didn’t get the formal pictures but I got a lot happier Wyatt than if I would have forced him to go to the dance. I have learned over the years that what is expected of the high school years may not be what Wyatt experiences and that’s ok. We have worked extremely hard to make the high school years (and all previous school years) the best yet and I feel we have been able to finally get teachers on board with seeing Wyatt’s success is different from the success of other High School students. I needed to understand this (and grieve the High School years I thought I would have with him) and so did the teachers. It took years for Patrick and I to come to terms with the school expectations and it might have taken 11 years of school for it to happen but it finally did and I am hopeful his senior year is going to be great. He will graduate in the Class of 2025 and he is getting his senior ring next month that says I Survived!
As I look back on the past 16 years, I wish someone would have told me that this is a marathon and that not everything needs to be done NOW. Marathons are EXHAUSTING. At diagnosis, I wish the doctors would have given me a handout that I could read when I felt ready to acknowledge the new life changing diagnosis. I wish I would have had a list of groups that were out there to help (there were not as many as there are now) and I wish I could have had a mentor to help guide me thru clinical trials, the best clinics for care, the advocacy groups that help with raising awareness and the ones that can help with financial issues. I needed a friend because this diagnosis is lonely. Many of you may have had the same experience of losing friends that you thought would be there for the long haul. I am here to tell you that if they left they were probably not the people who you needed for this journey and the friends that you make and accept you and your orange are the ones you really need at the time.
I do want to say, especially since we are about to hear from the pharma companies who put their hearts and time into finding a treatment for our boys that over the years we have chosen to get Wyatt into multiple trials (4 medical and 2 research studies). Not all were great experiences but I believe we were put in those trials for a reason and we learned so much from them. As he has gotten older he makes the decision because this affects him even more than it does myself. I’m just here for the ride and heavy lifting (literally). He decided he wanted to stop a trial shortly after he stopped walking in 2022, we discussed the consequences and he was able to make his own informed choice. Months later we talked about screening for another trial that was again out of state. We had to travel, but if he was on board I would work on getting everything set up. Traveling has gotten increasingly harder but he agreed to screening for the trial. He has now been in it for over a year and we are all happy that he decided to do it.
Participating in a clinical trial is not for the weak. It is hard on everyone in the family. With time away from school and work and priorities of other family members it is not easy for everyone to be in a trial. But it is rewarding knowing we are able to forward science and hopefully get some more of these meds available for our boys and girls.
I want to leave you with this….I have been a mentor to newly diagnosed families in my community. I have actually created a packet with the information that I mentioned earlier if you would like a copy give me your email address. I have started a blog www.laughingthrutears.com in order to process all the emotions that go on through my head. It’s easy for us as parents to get lost in the everyday of living with DMD but finding a purpose beyond that is important to and will help you to be a better caregiver to your son or daughter.
Please feel free to share with anyone who is going thru a hard time because our journey is unique but similar to others who are on a special needs journey.
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