Saving Your Marriage after a Down Syndrome Diagnosis- One Mom’s Fight

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Saving your marriage after a Down Syndrome Diagnosis

Many moms have shared their stories on this blog and each brings a slightly different perspective to the table. We all experience so many emotions at learning of a child we have had, or are expecting, being diagnosed with Down Syndrome. Some of us lean on our partners and our marriages become stronger, but some really struggle and they are not alone, it is just not something that is often talked about. This post was written by one brave mom who wants others to know that she has been there too. One mom who bravely fought to save her marriage but wishes to remain anonymous to keep her husband from ridicule, that is a strong woman. This is one mom’s fight, saving your marriage after a Down Syndrome Diagnosis.

There is a video floating out there on social media that brings me to tears every time I view it. It’s a group of moms with their children with Down syndrome signing carpool karaoke to the song, “A Thousand Years” by Christina Perri. I play the song for my daughter with Down syndrome before her naps. Some days, I cry while rocking her. The lyrics bring me back to a dark time in our life. 

My daughter’s diagnosis was a shock to us. We found out on the day she was born. We had been through many heartbreaking miscarriages, and we had waited so long for this little one to arrive. Of course, I had concerns and emotions to process when the diagnosis was delivered, but I remember looking at her and thinking, “I don’t care. I love you and I will protect you for the rest of your life.” I also remember looking at my husband and watching him go into a state of shock. He appeared lifeless. He wouldn’t even look at her or me. 

I remember holding her in my arms in the wheelchair as we moved to our room after delivery. We were in the elevator with another family that had just had a baby. The other mom smiled, her bundle of joy in her arms, and congratulated us. I looked up at my husband and he was not there. He was physically there, but he was not with us. 

The lyrics take me back to that elevator ride every time.

The day we met,

Frozen I held my breath

Right from the start

I knew that I’d found a home for my heart

Beats fast

Colors and promises

How to be brave?

How can I love when I’m afraid to fall

But watching you stand alone?

All of my doubt suddenly goes away somehow

One step closer

I have died everyday waiting for you

Darling don’t be afraid I have loved you

For a thousand years

I’ll love you for a thousand more

I made a decision in that moment. This was our baby. This was the baby that made it after losing so many. I waited so long to have her and I would love her forever. I had to believe this was happening for a reason. I would learn everything about Down syndrome.

For the first year and a half of my daughter’s life, my husband disappeared. The man who replaced him self medicated with alcohol. He stayed out late and didn’t come home. I would nurse our newborn through the evening utterly alone. Even when I confronted him, he didn’t care. It was as if he didn’t care about anything at all. 

His career involved travel and he made a conscious decision to stay away from our home as much as possible. I would try to talk to him. His response was always the same. He was joyless. The only thing that brought him happiness was his career.

This was not my husband. The man I married had doted on our first daughter. He never wanted to take a vacation without her. He did all the things that Dads do. He threw her in the air. He was her playmate. He did laundry, cleaned bottles, and told me that I looked beautiful when I didn’t. He reveled in being a Dad. He was a good man and husband. Depression had taken him from us. 

I confided in very few people while this was going on. The people I did lean on didn’t know how to help me. They knew my husband had been a good man, but they worried. I worried. I would never leave him alone with the baby. He wouldn’t utter the words Down syndrome. I could go on and on about the pile of incidents that occurred that first year. He broke me. He broke our family. He even went so far as to tell me that he didn’t love our daughter, on my birthday no less. I was riddled with anxiety. I was terrified of something happening to me. Where would that leave our daughters? I asked his family for help. I asked his friends. No one could reach him. 

I pushed for him to see a therapist. I pushed for medication. He insisted he was fine. I wanted him back and I had to believe he would return to us. I turned to my support groups. Had anyone dealt with this? If they had, they weren’t willing to admit it. No one could relate to what I was going through. People would simply say, “If my husband didn’t love our child, that would be the end of our marriage.” It’s so easy to sit behind your computer and make proclamations like that, but no one was standing in my shoes. 

It all came to a head after another night of him not coming home. At the time, I didn’t even care if he was having an affair. I realize how crazy that sounds, but I had bigger priorities. I just needed resolution or closure. So, I kicked him out. He exploded and the rage came out. He beat me down with his words. He said awful things to me. He took everything he had been bottling up, and took it all out on me. It was all my fault. In the 15 years I had known my husband, he had never acted like this. I told him he was not allowed back in the house, until he started going to therapy. 

Eventually, he did start going to therapy. He moved back in. He started medications. Some of those medications brought on fits of rage and anger. One night, after drinking, he proclaimed he wanted a divorce and that he wasn’t happy. He took it back the next day, but it was too late. He had done so much damage, and I didn’t know if I was capable of forgiving him. He was not participating in our family or being a parent. He knew nothing about this sweet baby that I had fallen in love with. He had not been on any appointments. He had not met any of her therapists. I was clinging to hope that he would come back to us, but truthfully I was hopeless. This constant state of uncertainty ate at me. I wanted to protect both my daughters, and I didn’t want them growing up in a volatile household. I left him, both girls in tow, and went to my parents’ house. 

Eventually, he came to my parents, begging for forgiveness and asking me to please give him one more chance. I told him that he had been emotionally abusive. He had broken us, and I didn’t know if I could forgive all that he had done. I didn’t trust him. I agreed to couples counseling and I told him this was the last chance. 

Why am I sharing our story? I know that there are other moms out there, going through this right now. I know you feel more alone than you ever have. You are not alone. Anybody who says their marriage didn’t struggle after a diagnosis is lying. I remember reading articles the day after her birth that said, couples that had a child with Down syndrome had a lower divorce rate than the general population. That made me feel like a failure. I don’t want anyone else to feel as isolated as I did. There is nothing wrong with you. This is life changing stuff. 

I am happy to say that my husband has returned to us. It took work. We had to fall in love again. I had to learn to trust him. He had to prove himself to be a better man, husband, and father. It’s a work in progress. We started by carving out times for just us. Medications did not help him. Over time we realized that exercise was his weapon to fight depression. Truthfully, he needed to process it, in his own time. Little by little, I let him into the world of our daughter and her diagnosis. Our daughter is 2 now. He still doesn’t participate in her therapies, but our therapist told me that I need to let him get there on his own. He needs to look at her for who she is, not her diagnosis. He supports my advocacy work, and he listens and takes note of her progress. 

He has love in his eyes when he sees her. The other day, my daughters and I ran into his arms, after he had been gone on a business trip. I had a realization in that moment. When we were struggling, he would come home from a trip, and suck all the joy out of the room. His mood and demeanor would bring us all down, but now we miss him. He walks through the door and we are happy for his presence. 

At times, it feels like it took us a thousand years to get here. I cried more tears in that time than I have in my whole life, but we made it. I put one foot in front of the other and focused on being a mom to my daughters. They got me through that time. 

Some people think I should have divorced my husband, but they have not been through or faced what we have. Depression can change a person. It can make them unrecognizable. A diagnosis can send someone into a state of grief and depression. So, when you are looking at those photos of happy dads accepting their child and loving on them, don’t let it suck the joy out of your world. Not everyone gets there right away, and that’s okay. I wrote this anonymously, because I did not want to expose my husband’s journey, because it isn’t my story to tell. My fellow Rockin’ mom bloggers agreed to share it. My hope is that it reaches someone who needs to read it.