‘How much more can we handle?’ Being a military spouse was the toughest part of my life…or so I thought.’: Military spouse learns to ’embrace the suck’ after daughter diagnosed with rare cancer

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“My husband, Matthew, and I met in September 2004. We were both students at the University of Connecticut, in Storrs Connecticut, home to the famous NCAA UConn Huskies. We were both active and involved in the campus Greek Life system and lived in the newly built ‘Greek Village.’ This was basically a townhome-style dorm at the top of a hill surrounded by cow fields. The story of how we met is as old as the age of time, boy meets girl, girl is dating boy’s fraternity brother, boy makes it his mission to steal the girl away.

Well, Matt was successful in finally getting in between my previous suitor. I set up our first date, and he promptly stood me up. It took him quite some time and lots of convincing to get a real first date after that. How did he do it? He did the only thing he could do, came by the sorority house after his weekly ROTC day in uniform. Hook, line, and sinker. I was a goner after that. We began dating. Matt was a Junior and I was a sophomore.

We ended up being college sweethearts, with him graduating in the spring of 2005 with his commission into the USAF and me left behind to finish my senior year and then graduate school. We did the long-distance thing during his first 2 years as active duty including a 9-month deployment (to Iraq) while I finished my M.S. to eventually become a teacher. If Matt and I learned anything at all from our time apart as students, it was distance makes the heart grow fonder. This would be a common theme throughout our marriage.

Courtesy of Sarah Kowalski

The Air Force is undoubtedly my husband’s first love, always has been, and always will be. I am okay with that. I knew he was driven from the second I met him. He signed up for the Air Force as a high school senior, getting the amazing ROTC scholarship the spring before the infamous September 11th, 2001. The Air Force, or any of the sister services, has an amazing way of becoming the constant in your life. The thing that keeps you grounded.

Courtesy of Sarah Kowalski

So many things about our lifestyle are ever-evolving, but the constants of the Air Force value, service before self, is always there. The first time we would encounter this was when my fiancé almost missed his own wedding. It was a very tumultuous time in 2007, the year we got married. Ultimately, he made a deal with another service member to go home on time, and that wonderful soul would stay behind and serve the extension that was ultimately for my husband.

Courtesy of Sarah Kowalski

The military lifestyle is like no other. Unless you live it, it is very hard to describe what it can be like. My biggest challenge as a military spouse is the contradiction of my type-A personality. The need to be able to go with the flow, and the hurry up and wait that comes at some point or another in Active Duty life. I have gotten very used to being able to say okay and throw all of my plans out the window. More times than I can count, I have gotten the dreaded phone call that starts, ‘Hey, so, guess what?’ and my answer is usually, ‘What now?’

We have moved 6 times in the almost 15 years my husband has been active duty. We have had 3 deployments, the first I already talked about, the second was a year in Afghanistan, and the third was another year in Afghanistan when I was 8 months pregnant with my daughter. One of the things you don’t hear about before you are a military spouse is how much your friends become family. You are all in the same boat. You all are facing the same challenges. You lean on one another and form bonds that are deep. Some of the best friends I have made in my life are people I have only known for a couple of months.

Courtesy of Sarah Kowalski

I have learned how special family time is, how the simple and mundane tasks of everyday life can be so important as a military family. Dinner together at the table? That is a blessing. Being home to put your kids to bed? That is cherished. Being able to see your child born, in person, and not listen to it over the phone or via video messaging? That is the greatest gift of all.

While it is exciting, to me anyway, to move every couple of years, there are some drawbacks. Things can fall through the cracks. For example, our son Jackson, was diagnosed with Autism at 3.5 years old. We noticed some subtle differences between him and our friends’ kids. As a family, we decided it would be best for me to put my career on hold, as my husband’s career field in the Air Force tends to be less stable. As a Security Forces officer or enlisted, the hours are long, there are multiple shifts, and there is always something going on. We needed a parent we knew could be home and be reliable for Doctor’s appointments, school, or even for a housework order.

I brought these differences up to our son’s pediatrician. He was only two at the time, and very smart. It wasn’t a major concern until we PCSd again, to a larger city. Our son’s pediatrician in the metropolitan area was not as convinced there wasn’t an issue. Of course, by this time, my husband was already set to deploy, and I was pregnant. It’s funny how major life moments seem to always occur right before or during a long deployment. I ended up doing the whole testing and screening process for my son alone. I was alone when he received his diagnosis, and I was alone to figure out what to do next. As a parent, military spouse, person in general, was the toughest part of my life…or so I thought.

There were days I had to remind myself ‘you are enough.’ Whatever decisions I made, they were the right ones. When you don’t have anyone at home to bounce ideas and strategies off, it’s easy to second guess yourself. I had to learn to not do that. I had to go with my gut. I had to teach myself today is done and tomorrow you get back up and you do your best again. Every day, YOU are enough. With the amazing help of the school system on base and the MTF Developmental Pediatricians, I was able to get my son in every single therapy I could. He is now almost 7 years old and thriving. He is talking, playing, interacting, and so so amazing.

Courtesy of Sarah Kowalski

We left DC in the summer of 2018. My husband had completed his deployment, graduated from the National Defense University, and he had received his first Command. We were thrilled. Not only was it career advancement, but the Air Force took into consideration our family situation (We are EFMP) and sent us to San Antonio, Texas.

There are amazing services here for Autism families and we had lived here 10 years ago, so we knew the lay of the land and had an established support system. Since we have moved to San Antonio, I have found I am not able to be as involved as I would like for the first time in 13 years. My main focus has been getting my son to his various appointments. He has 4 appointments outside school and home every week and 25 hours of in-home therapy appointments a week, on top of going to school full time.

Our resilience as a family would truly be tested this year. I thought I had seen it all and handled it mostly with grace. However, in December 2019 our world was turned upside down. Our daughter, Charlie, was diagnosed with Stage 2 Rhabdomyosarcoma. What we thought might be pink eye or maybe an eye infection, is one of the rarest childhood cancers you can get. It is estimated less than 500 people are diagnosed with Rhabdo each year. We were shattered. For the first time in my life, I found myself asking ‘Why our family?’ ‘How much more can we handle’ ‘Why do BOTH of our children have to struggle?’

Courtesy of Sarah Kowalski

Within a week, our phenomenal Doctors at Brook Army Medical Center had her diagnoses, biopsied, port surgery, and had started frontline Chemotherapy. Our Air Force family rallied around us. The amount of love we have felt from the members of my husband’s squadron, group, and base leadership is astounding. We already had a hectic life with all of Jackson’s therapies, but now we need to add in 18 months of frontline chemo.

Courtesy of Sarah Kowalski

Everything seemed to be going smoothly until the introduction of Covid-19. Obviously, this is not an issue that is just ours. However, the virus making its way to the US just happened to coincide with Charlie’s 7 weeks of radiation at MD Anderson Cancer Hospital in Houston Texas. This means my hard thought out therapy schedule for Jackson, treatment schedule for Charlie, and parent schedule for us went poof. Gone. Obsolete.

Jackson is suddenly no longer in school, therapy centers are closed. They aren’t doing home visits any longer. The hospital has enacted strict new policies for everyone’s safety. This means only ONE parent may accompany a child to treatment; they do not recommend parents switching for treatment. This means my husband will be responsible for living in a hotel with my 3-year-old, alone, for 7 weeks while she receives daily radiation and chemo. He is now her sole caregiver. My position of the holder of the schedules, comfort queen, and Mom…is reduced to only caring for one child.

Courtesy of Sarah Kowalski

This sent me into a wave of guilt. I cannot physically teleport myself to Houston like I want to, so FaceTime became our new friend. Finally, after 4 weeks of isolation, we were cleared for a visit. I haven’t even ventured to the grocery store in 4 weeks! Grocery delivery is amazing and has helped so much!  My son and I were able to spend one wonderful week in Houston. We were finally together as a family. Charlie began sleeping better, smiling again, eating better. We have always been able to keep a smile on her face throughout her treatments, and the isolation from family was making it fade.

Courtesy of Sarah Kowalski

We now have 2 final weeks of radiation and being separated. My son and I are lucky enough to be able to go back to Houston for her final week of treatment, and then I can bring my lovebug home where she belongs. This doesn’t mean she is done with treatment for good, or we no longer need to worry about Covid-19, it just means we are all together again.

Courtesy of Sarah Kowalski

Our family motto has always been to ’embrace the suck.’ I know that sounds horrible, but trust me, it isn’t. It just means you need to tackle your challenges head-on. You need to embrace them. If you don’t, they only fester and get bigger. You can’t fix or surpass a challenge if you don’t meet it head-on. It’s okay to cry, it’s okay to vent, it’s okay to scream, it’s okay to ask for help. So far, as a family, we have been able to preserve through deployments, separations, medical diagnoses, and now a pandemic. And you know what? We are stronger for it.”

Courtesy of Sarah Kowalski

This story was submitted to Love What Matters by Sarah Kowalski of Schertz, Texas. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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