In a few short days I will have a 14 year old. Given the diagnosis of Spinal Muscular Atrophy (SMA) handed to us when he was just 10 months old, that is pretty astounding. Fourteen on the 14th; I was recently told that is a golden birthday and considered extra celebratory. For us it means lots of gold décor and a family game of Risk, per the birthday boy’s request. What’s even more impressive is that my husband will be home to celebrate with us, which in our lifestyle is pretty unusual. You see, we are part of the super-secret society of special needs military families. We are our own rare breed, a small but mighty group. Each family unique in disability and dynamic, but similar in lifestyle. I feel fairly certain that the prayer St. Teresa of Avila kept in her breviary, “Let nothing disturb you; Nothing frighten you. All things are passing. God never changes. Patience obtains all things. Nothing is wanting to him who possesses God. God alone suffices.” was meant for military spouses and special needs parents, of which I get the privilege of being both.
Being a military spouse was never on a list of life goals for me and frankly, neither was being a special needs parent. Both involve being very comfortable with uncertainty and as a recovering control freak, I can tell you that is not easy. I know now there was a bit of Divine Providence in play, as I chose St. Teresa of Avila as my confirmation name. Of course, back then I just thought it was pretty amazing that she was the first female Doctor of The Church and had a slightly sarcastic sense of humor. She was basically my hero.
Maximilian was a mere 6 weeks old when my husband deployed for four months. By the time he returned home I was already noticing small issues with Max and growing increasingly concerned. It took another five months to determine an exact diagnosis of SMA. There was sat, hundreds of miles from any family, in Charleston, SC and heard the words that would change our lives. The neurologist explained that given the severity of Max’s condition there was a 50% chance of survival to his 2nd birthday. At the time of Max’s diagnosis it was not uncommon for my husband to be out of the country 10 or more days a month, and most of the time unable to communicate with us. How were we even supposed to function? Our closest family was 8 hours away.
The next several months were like drinking from a fire hose on many different levels. Obviously, we had to learn about Max’s disability and with that came feeding tubes and respiratory support, along with loads of other stuff like physical therapy and power wheelchairs. There was navigating our insurance, which was a huge learning curve for us right at the beginning, especially with nursing care. Our biggest question mark laid in my husband’s career. How the military handles each situation is so individualized based on branch of service and career field. Not traveling was not an option, so I had to get very comfortable with going it alone and my husband had to be comfortable with letting me make life or death decisions, which seemed to happen with a disturbing amount of regularity.
So what does life look like for us today, almost 14 years later?
Well, now we have two boys with SMA, as Alexander Dominic was born in 2012. We have moved three times, Charleston, SC to Pensacola, FL back to Charleston, SC and now outside of Washington, DC. This means that we have recreated the wheel four times. Four school districts, three children’s hospitals, all new physicians, power chair people, therapists. Housing is always a tremendous undertaking, as we try to always live off base for better schools (many bases tend to be in pretty difficult school districts). Last, but certainly not least, finding a new parish that accommodates both wheelchairs easily is quite a bit tougher than one might think. We plan for one year before we actually move. Change is exhausting and yet each move has brought us something unique and special. God’s faithfulness has been evident every single time.
My boys think moving every 3-4 years is completely normal, like any other military kid. It seems strange to them that people stay in one place for so long, which is funny because I never left my hometown until after I was married; that’s what a Florida girl gets for marrying a Minnesota guy. They think driving their power chairs inside of cargo planes, and Whitehouse tours, and exciting adventures in new areas are totally normal. All they care about is if a Target is near their new home. In many ways I think the moving has made them better advocates for their care and needs. They see zero issues with rolling into a 504 meeting and running that meeting. They don’t want me to talk to their new physicians, they want to do it.
Despite all of our moves and being far from family and friends, God has faithfully provided for us, sometimes in our military community, sometimes our parish community, always in our marital relationship. Living far from family means relying on each other in a way I don’t think I would have understood had we remained close to our families (but it doesn’t stop me from wishing we all lived on a compound together, especially right now).
Military community and church community are strikingly similar. The protective nature and generosity of our military family (for Air Force families, they are called squadrons) cannot be denied. During one of my husband's deployments, Max became very ill and had to be placed on a ventilator. The prognosis was not good. Aaron spent the next 24 hours on multiple different planes, finally landing back in the US after midnight. Meeting him was his commander and a fellow air crew member ready to drive him straight to the hospital. Fellow spouses have dropped everything to help me with the boys when one is in the hospital. They have brought me my favorite drink (McAlister’s sweet tea) to the hospital in rush hour traffic. When we totaled our van and Max’s power wheelchair, it was the commander’s wife who sat at the hospital with us and gave us a ride home.
At this point, you’re probably wondering what hasn’t happened to us, or maybe you’re nodding your head in agreement and for that I’m sorry. I don’t wish our chaos on anyone. For a while I was telling people that we were permanent meal train recipients. I can never repay the generosity that has been shown to us through the years, generosity that I had to learn to humbly accept. I can only try to pay it forward whenever possible. Most of our parish communities have been equally as welcoming, but unlike the military community, which makes an almost professional effort at engaging families and showing up in times of need, with parishes you really have to put yourself out there first.
Now don’t get me wrong, when I say God is faithful, I mean it. Each move has provided us a truly wonderful parish with priests who you can tell love the Lord with every word and deed, and even some gifted homilists. We always set up a meeting with our parish priest shortly after arriving. Max doesn’t eat by mouth, so he consumes the Eucharist with a special spoon for the Precious Blood. This is something that many priests haven’t done before and requires a little preparation and planning for when we attend mass. I love that my boys are so comfortable with our priests. Our youngest son asked our current pastor how he was supposed to be an altar server without a ramp to the altar, something our previous parish did actually have. I sense a future advocate.
The biggest challenge we face as a military family is the starting over; and I don’t mean the doctors, hospitals, schools or even parishes. I can organize my way through that. It’s not housing, we’ve always figured that out. Nope, all those things, despite frustrating moments work out just fine. We can roll with those punches. The most exhaustive part of moving is relationships, making friends, establishing meaningful connections. I have had to force myself to attend spouse socials and parish bible studies. It is my biggest challenge every single move, but the alternative is isolation, which is something special needs parents are all too familiar with, never mind the added layers of a completely new community. God has sent all of us some truly wonderful friendships. For me, personally, I have had the joy of meeting extraordinary women, whether it be from church, the Air Force, or our neighborhoods.
With all of that being said, our current location has probably been our most difficult, present world events not withstanding. We live in a small rural community, which we love. The town is super cute and ridiculously convenient in crazy ways. For instance, the boys’ physical therapist’s office shares a parking lot with our parish, so I can walk over to Adoration while the boys are in PT, which means I have zero reasons not to go to Adoration on PT days. However, I’m not sure if it’s the people, or me, or perhaps I am just weary of starting over at this point, but following this particular move, both Max and I have struggled with making friends. For Max, the older he gets the more difficult it seems for people to take the time to get to know him. For me, a lack of consistent care combined with my husband’s schedule means I can’t join volunteer groups or bible studies (back when you could do that sort of thing). We are the farthest from family we have ever been, so visits are less frequent and driving the boys to either of our hometowns is impossible. Aaron is still gone quite a bit, so many weekends and holidays it’s just the boys and myself. Most homes aren’t accessible for the boys’ chairs, so even if the invites were there, it wouldn’t make a difference. I’m not sure why this particular season of our lives seems so isolated, even before pandemic. Truth be told, the pandemic didn’t really change too much for us- who knew we were so ahead of the curve? Despite all of this, I have learned to trust. I trust there is a reason. I trust it’s only a season. “Patience obtains all things. Nothing is wanting to him who possesses God. God alone suffices.” St. Teresa of Avila, pray for us.
Tracey High lives with her military spouse, and two sons in Maryland.