MANSFIELD LAHM AIRPORT, Ohio --
Ask just about any Airman about resiliency, and to some extent they will have experience in overcoming life’s obstacles while remaining ready to serve their country. It’s never easy, they would all agree. The proverbial pitcher known as “life” will throw curve-balls, fastballs, sinkers and sliders at Airmen who must physically and mentally train to face it all if they plan to make a career out of the military and maintain a healthy personal and family life at home.
The fact is, some strike out. There are resources available to improve their batting average for their next challenge at the plate but it takes the support of a team to find success together. As important as it is to reach out, it’s equally important to feel those resources are reaching out to you as well, imperative Airmen feel they have good wing men.
Those that know and understand what military members endure tend to thank service members for their sacrifices and for those that don’t know, most of those sacrifices are burdens shared by the service member’s family and friends. It’s extended time away from home, it’s reoccurring training across the country or even the globe, it’s missed family moments you can’t recover, it’s an understanding that there is always the looming threat of the unknown call to duty yet to come.
When a service member starts a family, everything compounds. They double down on the already risky adventure called parenting. They know there will be times apart and that one parent may be left to parent alone at times.
Military families understand the risks involved, but they also share an understanding of each other’s commitment to service and a trust that no matter what lies ahead, they’ll battle that together.
All of that can be terrifying in good health, it shouldn’t have to be harder than that. Until it is.
This is Colton’s Story.
Tech. Sgt. Jordan Reed, an Administrative Craftsman with 179th Airlift Wing Maintenance Group, Mansfield, Ohio, and her husband of eight years, Rusty, had their hands full. Both working full time and feeling their family was complete with their three daughters. Then came the unexpected news of a baby boy on the way.
“We found out we were expecting after we gave all of our baby items away.” Reed said, “We were shocked but very excited to be finally having a baby boy.”
Colton came into this world fighting. Reed explained that there were complications late in the pregnancy, the child was breached and prior to a C-Section he managed to flip on his own, surprising his doctors. During birth, he became stuck and dislocated his shoulder. Jaundice, bruised and unable to turn his head to the right, he began Occupational Therapy right away.
His first battles were the beginning of a war.
The Occupational Therapy helped Colton to move his head freely, but his head was misshaped, a severely flat area on the back, one eye smaller than the other, ears unaligned and his jaw was not straight. Doctors used a cranial helmet to address these issues.
“Colton had to wear a cranial helmet for almost 8 months, which corrected his head amazingly.” Reed said, “While dealing with his head issue, we started to notice Colton falling behind in his gross motor skills, like standing and walking. However, due to the helmet doctors were not concerned at this time, as they were hopeful he would start walking once the helmet was off.”
During this time period, Jordan’s aunt was battling unexplained health issues and had some testing conducted that found she was positive for Duchenne Muscular Dystrophy (DMD).
Reed explained how DMD affects males and females differently.
“This genetic disorder is found on the X chromosome, so women are carriers for this disease, and males are 100% effected by the disease. However, in very rare cases the woman’s “good” X fails and they develop the full DMD diagnosis. They immediately tested my Grandmother, my other aunt, and my mother. All were positive for DMD. So, I then was tested, and sure enough I was also a carrier. At this point it meant that Colton had a 50/50 chance of having DMD. His sisters also have a 50/50 chance to be carriers, however they will not be tested until later in life when they understand the outcome more. We were beyond scared at this point.”
After realizing the genetic risk, Colton had to be tested.
“We waited two weeks; it felt like the longest two weeks of our lives. Colton’s Creatine Kinase (CK) (muscle waste byproduct in the blood) levels were 22,666, and normal is anything less than 160. The genetic test confirmed our worst fears; Colton had Duchenne Muscular Dystrophy,” Reed said.
The news was understandably devastating.
“We instantly broke down. Our world was shattered. All of the dreams we had for our sweet boy seemed gone. Being told your child will lose the ability to walk around 10 years old, will need assistance with all daily activities, will be eventually on a respirator and feeding tube, then ultimately pass away around 20 years old is something you can never prepare yourself for. We struggle daily with this diagnosis. Some days are easier than others, but it’s always there hanging over you.”
The news of Colton’s diagnosis was an incredible amount to emotionally digest for the whole family, undoubtedly feeling the struggle between grieving and supporting roles.
“After his diagnosis I went to a low place for a while. I could not stop crying, and it was affecting not only my life but my family’s life. We have four children, three girls and one boy, who count on us. On the day we got his official diagnosis my mother was with us. I remember she pulled me to the side and told me to take a few days to cry it out, but then it would be time for me to be strong for my family. Colton is going to have a difficult life as it is, so our job as parents should be to make it as joyous, loving, and memorable as possible; so, that is our plan!”
Reed talked about how their support system has been vital to staying mentally fit through it all.
“Initially I think both of our families were in shock, and had no idea what to say or do for us. Colton was the first one in both of my husbands and my family to have something so severe like this. But that soon changed. Our family helps us daily get through our tough times. People ask how we can be so strong, and honestly it’s because of all of the support we receive from family and friends.”
Thankfully, neither Colton nor the Reed family would be alone in this war on DMD. The community rallied around their family and began reaching out.
“As soon as people heard about our son’s diagnosis we had instant support. Strangers we never met were reaching out to us. Family and friends were asking what they could do to help us. We were overwhelmed with love and support, which meant the world to us. My brother-in law, Cory Young, and his girlfriend, Brandi Brown, created T-shirts and wrist bands for the whole family in support of Colton. They also even started a GoFund Me page to raise money to help the cost of making our home more accessible for Colton as his DMD progresses.”
Reed said having a special needs child makes you appreciate the small things more, and makes you slow down and enjoy the moment longer. It really gives you better perspective on what matters the most.
“We are more forgiving, and I am learning that a messy house is a happy house. My husband and I are determined to try to give all of our children the same attention. Our other three children are all in different sports, 4H clubs, and many other community activities. We never want to tell them they can’t try something because of their siblings. It is a battle to juggle everything all the time. Honestly, if it wasn’t for our parents (Dian & Terry Adkins, and Schirlie & Jay Baker), Rhonda Hiesser & Family (close family friends), Kathleen Bartow (close family friend), and many more people, Rusty and I could not do this. We have learned that it really takes a village to raise a family.”
Airmen helping Airmen.
Family and friends are a vital part of anyone’s support system. That system gets a boost when it belongs to another family, like Airmen find they have in the Air National Guard.
“Since day one, all the members of the 179th who know about my son, have been beyond supportive. I was working in Force Support Squadron, and Recruiting & Retention when I first found out about Colton’s diagnosis. They helped me get through the initial shock, and they all continue to make sure my family, and I are alright. My “new” family in Maintenance Group are beyond supportive too. Everyone has been so nice, and offering help whenever needed. It is definitely a family base atmosphere. Master Sgt. Newson and Staff Sgt. Jones keep me going every day at work. One week they noticed I hit a low point, so they sent me flowers. They have been a blessing, and they help me tremendously.”
Reed has also found a fellow Wingman who has not only shown her support, but offers a shared experience.
“Another member of the 179th AW, Master Sgt. Michele Roark, reached out to me and we instantly started a friendship. Her beautiful daughter has health issues as well, so we tend to lean on each other when times get rough. Even though our children have different diagnosis, it helps talking to another mother who truly gets what you are going through. She has helped me set up home therapies for Colton, and additional resources I had no idea existed.”
Having someone to talk to who can relate to what you are going through is an excellent coping mechanism.
“I always thought ‘Being there for your Wingman’ was something we just said. I never understood what kind of impact that could really have on someone. We have been overwhelmed by the love and support we have received from the 179th.”
Airman & Family Readiness Program Manager, Emily Bachman, is one of the resources that assist an Airman’s family when they are in need.
“Emily Bachman is absolutely amazing. She is very kind and attempts to help anyone in need. I have multiple friends on base that wear Colton’s bracelet every day, and seeing them supporting my son like that is a great feeling. Some continue to remind me how they are praying for us, and how they are educating their friends and family about Duchenne Muscular Dystrophy. I have had multiple different individuals from our leadership reach out, ask questions, and offer their support. It blows me away how much others truly care and support each other.”
Working full time at the base, Reed spoke highly of how being a part of the unit has helped her during these tough times.
“Being a working mother of four is hard enough, but when you add this diagnosis to the mix, it makes things more chaotic. The number one challenge is being away from your child. Not knowing how many “good days” your child will have, or even how long your child will live, makes it incredibly hard to leave for any extended amount of time. Also, you never know how his health will be while you are gone. Life doesn’t stop, and that scares me the most. However, we are beyond grateful for the Guard. Working at the 179th AW full time was always my dream. The benefits we receive, the insurance, and support is untouchable.”
The ability to lean on a Wingman or utilize resources available to Airmen are essential parts of our culture that keep the organization fit to fight and ready to serve.
“Resiliency is absolutely important.” Reed said, “After the doctor confirmed our fears, I wanted to disappear. I wanted to hide, and stay in bed all day. However, my family needs me, my work needs me, my son needs me. I needed to be strong, and be a good role model for my children. Colton is a true warrior. His smile lights up any room, and he has an amazing personality. He needs to know that we will not give up, we have to fight for him every day. We NEED to find a cure. This disease is 100% fatal. As a parent, you will never stop wanting the best possible life for your child, and that is our goal.”
While leaning on her support systems, Reed expressed that there have been moments of clarity.
“I have learned that some days will be harder than others, and it is okay to feel those days. We are not perfect, we aren’t strong all the time, and that’s alright. However, you have to keep going, and cannot stay in that low place. I am in a DMD support group for moms. They understand our pains/frustration/and heartache completely. It really helps talking and getting things off of your chest. My husband is also great at listening, and opening my eyes to other point of views that I may be missing. He keeps me level.”
All throughout The National Guard, people often refer to it as ‘The Guard Family’.
“The Guard is 100% a family. When someone needs help, or is going through a difficult time, members step up to help out. You honestly build friendships that will last a lifetime while working here.” Reed added, “As a small local base, so many members have connections outside of here, longtime friends from school, relatives, neighbors. This base is really like a big family.”
Colton may have a rough road ahead of him, his battles have likely just begun, but with the support of his extended family spreading awareness and fighting DMD by his side, he too has an army of support.