Your marriage may not look like mine, and I know mine certainly doesn’t look like yours. I am married to my husband Vance, but I am also married to autism. My days are planned around autism and what it is serving up on that day. Over the 27 years, I’ve been married to autism, every day is different and no two days are alike. Sometimes there is an atomic bomb strapped to my body, and I never know when it is going to go off. Other days it is all happiness and sunshine, like the past two weeks since my son Kyle had a reprieve from autism for a bit, and honestly, my husband Vance and I felt a bit lost.
We are not used to calm, so we were thrown for a loop and were waiting for that bomb to be reprogrammed again … we dream of the bomb one day being permanently deactivated. We never lose hope that one day our son may live in peace.
Waking up each morning, not having any clue what your day will be like, is something we are used to. We still try to make plans, but we have cancelled vacations, dinners, church, sporting events and plans with our kids or friends.
We’ve been in the middle of meaningful conversations over coffee with a friend when all of a sudden we have heard water running down all three floors of our house. We have had friends over when our son has run through the kitchen naked, grabbing a breakable item and throwing it across the room, just narrowly missing the head of an innocent victim. Our life is like a juggler with flaming batons, we never know what end we were going to grab.
Our family was on vacation in Florida a few years ago, giving our kids an autism break when Kyle’s aid called us. He had swallowed almost a whole bottle of seizure medication and was hospitalized. One of us was going to fly home while the other stayed with the kids. I was sick with worry thinking he was going to die. Kyle’s body is incredible, and somehow his body knew what to do with the drugs and didn’t have an overdose. The hospital was trying to convince his aide to leave, and they would take care of him. This was right after they had wanted to give him a piece of pizza, even though he has celiac disease, and is on a gluten-free diet. Vacations can be unpredictable, they are not a for sure thing for us. Another time he was taken to the hospital while we were away, due to stepping on a darning needle.
Recently someone came by for a visit and said, “I hardly see you and Vance, you always seem to be on vacation.” I wish! Most people get up each day and plan out their day, we sit together and decide who is going to be home when Kyle come in at 3:30 to care for him. You may have small children, and you do this also, but my husband Vance is fifty-one, and I am forty-eight and people my age usually don’t do this anymore, they are starting to gain freedom due to their nests emptying out. Vance also works while we are on some of our holidays since he owns a business with his siblings and business keep going even when you’re on a break.
Yesterday Kyle had a bit of an anxious moment when he came home and took off running when he got out of the van. Vance was watching from the front door, he is always standing there at 4:00 waiting for Kyle to come home. I heard Vance say, “He’s running to the backyard.” I was in the kitchen and saw Kyle run by the window and unto the trampoline. Then he stripped off his clothes and threw his shorts into the woods. Vance told Sarah he would grab Kyle from the trampoline so she could get home. Sarah smiled and said thank-you. Kyle loves Sarah, he probably wanted to stay longer with her and got mad when she brought him back. Vance headed out to the trampoline and brought Kyle in and then went out and collected his clothes from our forest.
Just recently have I been able to be alone with Kyle again, since he is feeling better after starting a new herb called Samento. Vance has tried to be here every single day by 3:30 pm for the last year so I don’t have to wrestle Kyle when he has anxious moments. My husband is an unusual man, he is one hundred percent committed to his double marriage. He has wrapped his life around Kyle and me, and there are days when I wonder why he is still here.
In August I am going to Nova Scotia to see my ninety-four-year-old grandmother, and my husband will care for Kyle without my help, while I am away. I try not to take advantage of Vance’s kindness. He never asks for days off from autism, he is here every day when Kyle gets home, other than when he and I go on vacation together. Every morning he mops two rooms, cleans Kyle’s toilet, showers him, gives him medication, dresses him and gets Kyle out the door to go with his aids. Then he starts his workday. If an aide calls in sick, Vance cancels his whole day. It’s funny how someone would think my husband is always on vacation …
Why do we stay in this double marriage? We were gifted with this incredible young man who is worth more than all the fortunes this world could offer. Our hearts melt when he smiles at us, or he reaches out and touches our cheek. Our love for him is not conditional on his performance, IQ, ability to make money or make us look good. We love him because he is Kyle. God feels this way about humanity, but add on a thousand times more than we have for Kyle. We are only capable of imperfect human love, but somewhere along the way, God wove his compassion with our imperfections and caused us to fall completely in love with a child with autism💗
1 Corinthians 13:4-6
Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.
Believing and hoping