THE “SHARING OUR STORIES” PROJECT
February’s Story by Cari Kelley
We are delighted to present the first story in our “Sharing Our Stories” Project. Cari wrote this post on February 5, the birthday of her fabulous twins, Jacquie and Calvin. Cari’s story, “They Have Taught Me So Much,” beautifully describes her experience as a mother. Reflecting on that early birthday morning twenty-three years ago, Cari graciously shares her journey with the twins. She reminds us all of an important lesson: parents may be their children’s first teachers, but parents can also learn much from their children.
Happy February and Happy Valentine’s Day!
Love, Carol and VV
Cari Kelley is the very smart and very devoted mother of two loving and amazing children, Jacquie and Calvin. She works full-time as the Workplace Donor Relations Manager at United Way of Northwest Vermont. Cari also runs her own travel business, www.carimeawaytravels.com and with her daughter, Jacquie, she is the co-founder of www.wheelsforjacquiefoundation.org
THEY HAVE TAUGHT ME SO MUCH
I agreed to write the column for February a few months back and was happy to do it. There is a specific reason why I chose February and I have tried starting this article a number of times with no luck. Well, today, February 5th, is the reason and I am just going to let it flow.
Twenty-three years-ago today, at 7:15 am and 7:23 am, Jacqueline Marie and Calvin John, entered this world weighing in at exactly 5 pounds each. I entered the hospital, during the worst ice storm in Vermont, after a visit to my doctor who informed me that I was in labor. I was 30 weeks pregnant and it was looking like they would be delivered and end up in NICU. I am pleased to tell you that because of the tremendous team at then Fletcher Allen Hospital, now University of Vermont Medical Center, I was placed on hospital bedrest and we were able to postpone my delivery for another 30 days. They never needed to visit the NICU and came home with me two days after delivery. There is a whole story that I could write about my experiences during this hospitalization, but truly, the meat of this story is in the years after the birth.
For the most part, Calvin and Jacquie were healthy, happy babies and keeping up with all the growth goals that the doctors like to see. Jacquie did have a few years where she had febrile seizures (seizures that would happen when she would spike a fever), which were truly scary and caused lots of tests and ambulance rides, but we were assured that they would pass in time. She had her last at the age of six…thank goodness!
It was at the time that they started to learn to walk that there was some question about Jacquie’s gait. I took her to the pediatrician, and he thought that it was most likely knobby-knees and her gait would straighten out in time. Something about that diagnosis did not sit well with me and my mother’s intuition was telling me to explore it further. Luckily for us, she was also under the care of a neurologist for her seizures, so at our next appointment, I asked him to watch her walk. She walked and ran up and down the hallway outside his office, and by the look on his face, I knew something was not right. He ordered a test but was pretty sure he knew what the result would be. After a muscle biopsy, in which I had to lay on top of her to keep her still (something I will never forget), the diagnosis came through; Spinal Muscular Atrophy, or SMA for short, a form of Muscular Dystrophy that atrophies the muscles.
Her father and I were devastated and did as much research as possible on this disease. The good news is that it has no impact on the brain. The bad news, she would slowly lose her ability to walk. Jacquie was born determined and we knew that we would take this on, day by day, and help her along her life’s path. In first grade, she was given an award by her physical education teacher and I will always remember what he said about her, “When you look up the word determined in the dictionary, there is a photo of this person there. She never gives up and pushes herself hard, and for this reason, I am pleased to present Jacquie this award.” You can only imagine the pride and emotion that I felt for her. I have raised her to verbalize what she needs, stand up for what she feels is right, and lean on me when she needed to.
Through it all, that is exactly what she has done. Jacquie graduated Magna Cum Laude from Providence College in May 2020, with a degree in Political Science and a minor in Music. She is currently living in Santa Fe, New Mexico, while her service dog, Moose (a 90-pound Golden Retriever) obtains his international certification. She will be attending the University of Leeds this fall (after her program was deferred because of the pandemic) for her master’s degree in Disability Studies. She will go on and advocate for the differently-abled, and I have no-doubt, will make her mark in this world. She uses an electric scooter to get around and is very independent.
While Jacquie was struggling with her health, Calvin started to show signs of his own struggles. At one point, one of the mental health workers that was part of his team told me that he has, “survivor’s guilt”. It took me a long-time to get my head around what was going on for him, but as I reflect on it, I can see what they were trying to tell me. He just didn’t understand why his twin sister had SMA and he didn’t. I remember one day, when they were very young, he said to Jacquie, “Jacquie, if I could take your weak legs, I would.” That’s a lot for a little guy to carry.
It really all started in kindergarten when the decision was made to separate the two and give each of them their own classroom of kids. Calvin started to show signs of anger and aggression, something we never saw in preschool. There were lots of meetings and discussions about whether or not we should put them together, but in the end, it was decided to try and continue to help him in his own space. By the time he was in first grade, kids were starting to understand that he was different than they were, and many of them would push his buttons to see him explode. Once that happened, he would be sent to the principal’s office, and most of the time, sent home. This would happen regularly, and it came to the point where the school felt that Calvin needed different schooling.
During these formative years, he was learning the skill of “fight or flight” and his anxiety and depression was of major concern. The public school pushed us to enroll him in a school that addresses behavior concerns that is run through a mental health agency. After receiving a call at work that Calvin was under the table in his first-grade classroom, refusing to come out, and driving to the school to help him through this situation, we agreed that the move might make sense. So, he moved to The Baird School in the middle of his first-grade year.
He stayed at Baird until his 5th grade year, when I demanded that he return to the public school because he had lost so much of his academic learning. It was a fight. During an assessment meeting, the principal of the public school (who was different than the one that was there when he left) insisted that he be able to stay in the classroom 80% of the time. I looked at him and said, “I want everyone to be quiet for 30 seconds. (After 30 seconds) Now, you tell me that you could stay in a classroom with all the screaming, yelling, and swearing that is going on in the hallways right now.” He looked at me and gave in. Calvin would be returning to school that fall.
Calvin continued to struggle through school. I was so proud to see him walk across the stage of his high school graduation in June of 2016. He had worked so hard, and even though his internal struggles were something that we fought head-on, and still do to this day, he has the best sense of humor and the biggest heart.
Calvin currently lives in Wisconsin, which is close to my family, and is doing very well. He has a wonderful girlfriend, who is solid, and they truly make a great team. For Calvin, it is all about his love of helping people. He has served as a Volunteer Firefighter when he lived in Vermont and is anxious to re-engage with a fire department where he finally settles. He loves the work and the firefighting family. I know that he will always be in a job that he is giving back and giving the best of himself.
Their father and I divorced in 2010, and shortly after, I found my true partner in life, Greg. He has no judgment, has been a positive father figure for my children, supportive, kind, and loving. He is truly my best friend and I am truly blessed. In the midst of all the pain from years ago, I would have never thought that I would find the peace that I have today.
I love my work in the community and I work full-time at United Way of Northwest Vermont as the Workplace Donor Relations Manager. Being a part of this incredible team and seeing the impact of the work that we do is inspiring. I am pleased to be able to help raise the funds needed to help others.
In November, Jacquie and I formed the Wheels for Jacquie Foundation (www.wheelsforjacquiefoundation.org) a non-profit Foundation that works to provide transportation for the differently-abled. We do need to start by fundraising for Jacquie’s van, but will continue the work to help others. I could write an entire article just on the process of obtaining a driver’s license and accessible vehicle. I also own my own travel business (www.carimeawaytravels.com), and proceeds from the business will help the Foundation. Please keep us in mind as the world starts to travel again 😊.
My mother has been my rock and supported me throughout my life. I feel both of my grandmothers with me always, who shaped my core values. This morning, after wishing Calvin a Happy Birthday, he sent me this text:
“You’ve helped me more than you know Mom. I couldn’t ask for more. I am grateful for everything. Your life lessons are the best gift I could ask for…”
With that said, I would say that the challenges and pain have made us all grow stronger, and for that I am forever grateful.