What happens when a husband and wife have very little left for one another?
AG and her family
Second in a series on marriage
By AG
My husband and I make a good team. Where I am weak, he is strong and where he is weak I am strong.
We met and fell in love in September 1999 and have been crazy about each other ever since. We wanted children, and I got pregnant 10 months after we were married. We were so excited to begin our journey as parents but then at age two our son was diagnosed with autism. I threw myself into research, new therapies, diets, conferences, and anything I could get my hands on to get my baby back from the dark hole he seemed to have fallen into.
He also acquired an autoimmune disease at about 7 1/2 years old, and it took us 7 years to get a diagnosis. Our help and treatment was scattered, and we went out of state to find answers. Shortly thereafter, we discovered our second son suffered severe brain damage in the womb. We knew from the beginning that his diagnosis would be lifelong, but we jumped in with both feet. That seems to be what we do. We give all that we have to our boys and then what's left to each other, which isn’t much.
This way of operating through our marriage is beautiful and bitter — beautiful in that we have truly learned what it means to sacrifice for another person’s wellbeing. To be in love with someone and see your life together passing by so quickly without being able to enjoy what you have with this person you vowed to love, honor and cherish, that’s bitter.
Or enjoying a rare moment together, which is often rushed and frequently interrupted with questions, phone calls from nurses, therapists, teachers, medical supply companies, doctors, business, or medical crisis. My husband and I long to spend more time together and drift away for a few days, but the care is limited for our boys. There are only a couple of people who are able to help and only for a short amount of time (hours at best), and care for our two boys is expensive. Finally, there's no line of autonomy or privacy when you have two bathrooms and one is used as wheelchair accessible and the other for our 20 yr old autistic son.
Neither of us is ever functioning at our best. We deal with immune issues from chronic stress, degenerative bone disease, and regular joint pain. We sit outside as much as possible for a quick cup of coffee or sneak away for a couple of hours if the therapist has our oldest and a nurse has our youngest, but it's hard when neither of us has time to process our trauma because we just go from one duty to the next. I've seen evidence of PTSD in both of us. Sometimes when I touch my husband while he's sleeping or try to wake him gently, he jumps out of his skin. We also both deal with depression and wonder when we will be able to do anything either of us dreamed about.
There are also things we argue about that would not be present without special needs children. A stupid argument might arise when one of us is trying to handle a meltdown and then the other’s anxiety starts to flare. I snap at my husband and feel the need to protect my child even though my child is attacking me. My trauma and fear of losing either of my children has caused me to micromanage at times, which makes my husband feel helpless. He goes inward sometimes and shuts down or gets lost in distraction to numb all that is going on. I don't blame him because it is a lot to handle.
One child is battling breathing, needs cathing and full medical care and the other is dealing with severe behaviors, epilepsy and needs to be active or he gets agitated. We have two very different levels of ability that we are always juggling. My husband simply turns off those moments when he's processing the loss of our children's abilities whereas I process externally and that weighs on him as well.
“I am thankful for my family, but I didn’t think it would turn out this way. We long for normalcy. We long deeply for mental, emotional and physical rest. We long for peace, hope and joy.”
I have questioned my faith many times over the years. I've had a lot of "why" questions and doubted the goodness of God. God always brings me back around and restores me. My husband does better in this area and goes with the flow, especially with God. I'm a fighter, a questioner and a doer. We've fought through a lot and grown together a lot. Sometimes, we have nothing left to give to one another because we've given it to everyone else, and we are simply trying to keep our heads above water, but in other ways it has drawn us so close together.
I am thankful for my family, but I didn't think it would turn out this way. We long for normalcy. We long deeply for mental, emotional and physical rest. We long for peace, hope and joy. We are always looking for these but they are hard to find when autism and medical fragility are present.
About AG: I'm a wife, mother, activist, lover of all things authentic and as transparent as they come. I love Jesus and my faith is as bumpy as my life. I’m also a wife to an amazing man with a big heart, creative abilities and a love for God. We have two children. Our oldest son is almost 21. He has autism, epilepsy and a rare autoimmune condition. Our youngest son has Cerebral Palsy, epilepsy and a spinal cord injury. I have found who I am designed to be when I love my boys. As challenging as it is, it has transformed me into someone I never knew I could be.