MEET JOYBOY, WILL JONES

BY: DR. DAROLYN “LYN” JONES (MOM)

I would love to introduce you to my family. My husband and I are Drs. James “Jim” and Darolyn “Lyn” Jones, and our son is Will. Will is 19 and has cerebral palsy and autism. He attends Hamilton Southeastern High School and is in the Functional Independence and Transitional Skills (FIATS) classroom. The FIATS classroom is designed for students with severe and profound needs. Students like Will, who are in this type of designated least restrictive educational environment setting, typically have complex medical needs. Will’s Individual Education Plan (IEP) states multiple disabilities, which requires him to receive multiple interventions.

Because of Will’s multiple disabilities and classroom setting, he can remain in school until he is 21. Will receives physical, occupational, and speech therapy through the school. He also receives weekly occupational therapy at home and, in the summers, weekly physical therapy. And this summer, he will begin recreational therapy.

Will enjoys going on walks. He loves playing with VCRs, playing videos, rewinding them, fast forwarding them. Will likes to bowl and to be read to. He loves to sort. And he loves company, someone to sit and engage with him. Will’s happy place is spending time at our family cabin, where he has a special VCR play area set up.

My husband Jim grew up in the Chicago region, and I grew up in three different communities in southeastern and southwestern Indiana. My family moved around often, and the longest place I lived anywhere was for five years. However, I have lived in the greater Indianapolis community now with my husband for almost 25 years and in my current home in Fishers for 18 years. This is the only home Will really remembers or knows, and we built it to accommodate his needs.

My husband and I have endured many challenges and struggles with our Joy Boy, Will. We waited to get pregnant and then, once pregnant, did all the right and healthy things. I had a storybook pregnancy — up until it wasn’t.

When we got pregnant, it was after 9/11, and my husband was an Infantry Combat Arms officer in the Army Reserves. He left his corporate position as a senior project engineer to take a military position with Ball State University’s Army ROTC to help train future soldiers — the country was actively sending many men to the Middle East to fight. Jim was also in command of his own Indiana Army Reserve unit.

Because we were expecting and making life and career changes, we sold our more expensive home, bought a simpler one with the hopes that I could stay home, finish my doctorate and we could lead a simpler life with a new baby. But when my husband was out in the field, and I was in my 32nd week of pregnancy, I woke up one morning, ate breakfast, and the baby wasn’t moving — something he always did. My doctor had me come in, and they sent me immediately to the hospital because while Will was still alive, his heart was racing, and he still wasn’t moving. By the time I arrived and was hooked up to a monitor, the baby had died. They heard a faint heartbeat, and then they didn’t.

I had an emergency C-section with half of my clothes still on because there was no time to prep for this emergency surgery, and after two Apgar scores of 0 and a hematocrit level of only 16, Will scored an Apgar of 1. A normal hematocrit or red blood cell count for a newborn is between 45% and 61%. Will had bled out in utero. He was the sickest baby in the NICU. He was born at 32 1/2 weeks, weighed in at a little over 6 pounds and was almost 19 inches long. My mother had very large babies, so his larger size was something that did help him survive. My husband did not arrive at the hospital until much later that day of his birth. Red Cross was trying to get him out of the field and back to us. When he arrived at my bedside, he had tears in his eyes, the only time I have ever seen him with tears. I told Jim I named our son Will— for will to live. And the name fits him because he has a strong will--- in so many interpretations and iterations.

After that Apgar of 1, Will had to have multiple blood transfusions, and his lungs weren’t fully developed. Every limb and orifice of his body had a line or tube running in and out of it. He was on an oscillating vent that breathed for him. His brain scans showed Burst Suppression Syndrome (BSP), no brain activity. At day 14, they told us we would have to make the decision to stop the vent because no meaningful recovery could ever be made past that point with the amount of time he had been on this kind of vent.

But on day 12, ironically, miraculously, blessedly, on Mother’s Day, he was able to move to a CPAP oxygen machine and was taken off of the vent. It was the first time I held him, and it was only for 15 minutes. It remains the very best Mother’s Day gift I have ever received. And the brain scan came back that same day, indicating no Burst Suppression Syndrome. The doctors determined that the initial BSP was a disruption in the brain caused by the lifesaving medications he had been given post-birth.

We knew then that Will was in there, somewhere. The doctors told us not to get our hopes up. After his birth, we were told he wouldn’t survive the night. And then, when he survived the first night, every day, we were told not to expect the next. Those were dark and difficult conversations my husband and I had to have. I had to remain in the hospital for eight days due to complications and to have 64 RhoGAM shots because I was RH negative and Will had bled out in utero impacting my own blood cells. However, I went downstairs to the NICU to be with Will and talk with the doctors and pump breast milk every day. Even when released, I drove an hour each way every single day to be with him, lugging my very sore body and breast pump machine, bottles, and cooler with me. I spent 8-10 hours every day with him and never missed a single day of the 39 days he was in there. My husband, then back from duty, would come after he had grabbed some dinner and stayed with Will in the NICU returning home around 10 p.m. after working 10-hour days. This was our routine for those long 39 days.

When we left the NICU, Will’s prognosis was still not good. Born dead, part angel/part boy, we had to figure out how to help him get out and grow and be who he was going to be. We grieved who he would have been while at the same time finding joy in who he could become. The doctors told us he wouldn’t live 6 months, then a year, then three years. And then, oddly, one doctor said he wouldn’t live past 8 years. He is 19 and still here, loving, living, and learning.

But his birth/death came with consequences. Will has had 39 surgeries and procedures in 19 years. He had seven therapies a week for the first three years and then three to five therapies a week until he was 16. After a certain point, insurance just wouldn’t cover his therapies anymore, so now we privately pay what we can and rely on the excellent therapists he has at school. His school physical therapist, Deb Gastineau, has been with Will since he was 3 years old in developmental preschool. They have a special relationship.

So much about caretaking Will and raising Will has been hard. Fighting for the best doctors and surgeons and therapies and school services and resources — it’s never-ending — is both simultaneously exhausting and rewarding. But we wouldn’t change anything. Because of Will, my husband and I are better humans, better parents, better Christians and better friends to others.

Because of Will, we changed our professional careers and directions, opting to move into higher education and becoming professors, something neither one of us ever thought we would do. My goal was to finish my doctorate and work as a curriculum specialist; my husband wanted to go back to the Army full-time. Because Will transformed us and gave us purpose, we wanted to also transform — to pay it forward. Going back to school in your late 30s and early 40s with a sick baby was not easy. Money was always tight. Will was born before Obamacare and 39 days in the NICU plus all of the medical and therapy expenses afterward, me not working for six months and Jim taking a reduced salary in the Army compared to what he made in the corporate world made living this new simpler life even more burdensome. But we got through it. I look back and am not sure how, but we did it. We were younger and had more stamina and didn’t know any different, I suppose.

And when we earned our doctorates and took our positions at Ball State University, I opted to work as a nontenure line contract faculty member, which means I have much more flexibility and do not have the same kinds of commitments my husband, who is a department chair in the College of Architecture at Ball State has. I have a flexible schedule, and I can still be a mom and a momager to Will — which is very important to me. I never missed a single day in the NICU, and I have only missed one of his 39 procedures. I had to have surgery myself and was not allowed out of bed, so my husband had two to take care of that week. But that’s it. Otherwise, I am there for everything. And my husband, Jim, despite his demanding once-military schedule and now-work schedule, is there for so much. We are partners and parents in Will’s care and happiness.

And I am grateful that I even get to work. I recognize that privilege. Unfortunately, I hear from so many mothers of children with disabilities who want to work, who have brilliant experiences and skills but cannot because of lack of care for their child or lack of flexible work options that pay a decent salary. I wish that society would 1) pay women equal pay and 2) recognize that mothers have so much to offer the workforce. Work with us around our schedules, and we can show you that we have some mad skills. I can talk on the phone with a home health care company organizing needed supplies while changing Will’s gastronomy tube (GTube) and keeping him entertained.

One thing I have learned is that when you have a kid like Will, go through what we have gone through and are still going through, folks gather or scatter. My mother and father-in-law were the only family that stepped in to help us. Elderly themselves, they would come and help do laundry or mow or cook or change a diaper or just read to Will, so I could get homework done or prepare presentations when I was a literacy consultant and coach. And we had good friends. They are our family, too. They come to the hospital and give us breaks, bring us food, help us with errands and household chores, stay with Will and include Will and us in their plans.

We love our son very much. He is our joy boy. Everyone who is willing to look past Will’s very visible disability and who gets to know him loves him. Even though Will is nonambulatory, nonverbal and intellectually disabled, he knows when folks are afraid or don’t like him or are “freaked out” by him, and he mirrors that response back. He knows who the good people are. If you aren’t sure if someone you are dating is a good person or not, Will can help filter that out for you!

I could write volumes about the pain and challenges. Will has been near death several times, and he has endured more medical pain and trauma than any human should have to. Even now, he lives with chronic pain. And he and we have had to deal with more exclusion, discrimination and ignorance than this article has space for — in every space you can imagine. We have experienced it with medical professionals, school professionals, disability services professionals, in the community at the grocery store, the park or on a walk.

But If I dwell there, if I dwell in the hard, it isn’t productive. What I know how to do is keep Will at the center and keep moving forward. I will keep fighting and advocating for his medical care, his waiver services, for his Social Security, for his education. He is not just my son, but a young man and a beautiful soul deserving of everything humanity has to offer someone who is “neurotypical.” He deserves to be included, loved and participate in this world. And he can do that with the right support. And do you know who has taught me the most about how to find, access and fight for those supports?

Other moms. Sitting in offices with our children, waiting to see doctors or to get called back for therapy services … we talk. There is this immediate and intimate connection because we all get it. The “it” is this life we live that, like our children, isn’t considered typical. I learned about the Medicaid waiver from a mom when Will was 4. He was born in a NICU, had multiple doctors, First Step therapists and yet, none of those specialists and interventionists told us about the Medicaid waiver. A waiver that could have helped us with those early thousands of dollars of medical bills. I learned about good orthopedic surgeons who specialize in cerebral palsy from a mom who had an older kiddo with cerebral palsy. I learned about accommodations we could make to our home using waiver dollars from a mom. I learned what a mobility van was and the kinds of mobility vans that are out there from a mom. I learned about caregiver pay you can access as the mom from a mom. The list goes on and on.

Now there are prolific social media outlets where families share this information. Three outlets I belong to and recommend are CP Warriors, Our Journey, and Indiana Special Needs Equipment Exchange. These outlets were not around when Will was younger. Social media had not yet emerged. For me, it was those quieter conversations with other mons in doctors’ offices or standing in the hallway or parking lots after doctor or therapy sessions that I learned the most.

Two moms sitting in a sterile space, anxious, nervously trying to feed or calm their child. Inside, you want to run out the door and just go back home to your safe space, but you have to be here, you have to show up and you have to advocate for answers, for help for your child. Your eyes meet up with that other nervous mom, and there is this unspoken acknowledgment, “I get it.” And after that look, then you just start talking rapidly before one of you has to go back. The exchange of phone numbers means meeting for coffee or margaritas, phone calls and texts. I am now one of those older moms that people often lean on. But I still lean on some older moms who taught me: Beth DeHoff, Mimi Hyuber, Jennifer Akers and Marie Kennedy, among a long list of others. Talk to other mothers. Gather strategies, ideas and resources from the moms who get it.

A mom moment and milestone for Will was when I first met now Fishers City Councilwoman Cecelia Coble. Her daughter is close in age to Will. We were sitting in a waiting room, waiting for our child’s respective therapists to come out and take our kiddos back to Hippotherapy at TherAplay. And somehow, the topic of crawling came up. I explained that at almost 2, Will still couldn’t crawl. And Cecelia told me not to give up hope because her daughter finally started crawling after a year and a half. And after doing absolutely everything the therapists told us to do and trying every incentive I could conjure, one day, Will started crawling. It was ugly, but he did it. He was 2 years old. And he became Super Crawler — that kid was lightning fast and got into everything and was everywhere. Suddenly I had to baby- proof the house. But what a victory and what a joy.

And one of the saddest days for us was when he couldn’t crawl anymore because his hips were coming out of place, and he had to have them surgically placed in a way that would not allow him to crawl anymore. But then we looked forward to the mischief he was able to get in rolling himself around in his wheelchair. He once decided he didn’t like the music in his teacher’s class and rolled out in protest. I love that he got in trouble and that I got a call from the school. We celebrated that call!

Here is my advice to newer moms.

Grieve the loss of family and friends. It will happen. And then knock that dust off and celebrate in the folks who want to support and love your family. The folks who don’t get it, aren’t willing to get it, or who don’t want to get it aren’t worth your or your child’s energy. In the medical profession, they practice medicine. Don’t be afraid to question, to get second opinions, to seek answers. Find medical professionals who are willing to work with you as though you were part of the team, not a passive participant.

Connect to other moms and to older moms — they are the ones who will share with you what the school, medical, and social services either don’t know or don’t have access to. And they don’t have to be moms whose child has the same condition as yours. Widen your perspective. One child with down syndrome, cerebral palsy or autism is one child. No two are alike. I learned so much from mothers of children whose children did not have cerebral palsy or autism.

It can lonely and isolating, and marginalizing to live this life. Find ways to socialize or work or live somehow in a space that isn’t all disability. My position as a professor at Ball State University is not easy, and it does often require me to work very late nights or very early mornings before Will gets up, but I love having something for me, something different. I love engaging with my students and with my community partners in Muncie. And Will has impacted my teaching and scholarly work in such positive ways. I don’t think I would have ever been as productive and successful a professor as I have been had it not been for Will. Don’t feel guilty about accessing available resources. They are there for your child and your family. Take advantage of what is available to your child and family. Raising and caring for our children is very expensive. I can’t just go to the grocery store and buy formula. It’s not that easy.

When folks give you those looks of pity or ask questions that are sometimes phrased offensively or ignorantly, I try very hard not to overreact but to take on the role of educator. Now, have I “momma beared it” a few times? Oh, yes, I have. I’m human. But I try to take a breath and then respond. I am often asked, “What’s wrong with him?” or “What’s wrong with his legs?” or “Why can’t he talk?” I’ll reply that nothing is wrong with him but that he has cerebral palsy, and he gets around on wheels and uses a smart device — just like we often do — to communicate. And when folks then reply with, “Oh, I’m so sorry,” accompanied with a look of pity, I reply, “Don’t be. He’s a great kid!” And if a child asks, I always invite them to come meet Will and answer all of their questions. Because kids ask out of genuine curiosity and interest. Their motives are pure and unfiltered because they are innocent.

Finally, and this is how I will end this article. This last piece of advice is something that didn’t come to me until Will was several years old. I admit that early on, I asked, “Why me? Why did this happen to me?” And now I say, “Thank God it was me,” because I can’t imagine Will landing with any other family then mine. My husband and I knew how to do hard before we had Will, we had the resources to caretake and advocates for him, and we can't imagine anyone else getting to enjoy that Cheshire cat grin or belly laugh but us. He’s our joyboy. He was meant to my son.