How our marriage beat the odds

I was captivated when I read Heather Hamilton's blog: Diary of a Supermommy. So imagine my surprise when I looked out my office recently and saw Heather (above) and Zack (left) in Holland Bloorview's library. It was a wonderful meeting and now I have a fabulous guest blog to share that I'm sure many of us can relate to. Thank you Heather! Louise

How Our Marriage Beat the Odds
By Heather Hamilton

Marriage is hard work. Add that to a life with kids, even harder. And with a child with special needs, the odds are against you. In fact, some studies show the divorce rate among couples who have a special needs child is up around 85 to 95 per cent! Our marriage has taken its own journey dealing with issues that have been exacerbated by the stress of a child with serious medical problems. I know we are not alone.

From the start, my husband Paul and I each knew the other was “the ONE.” Paul and I adore each other – we have for almost 15 years now. Like most couples, we had certainly had our ups and downs. When our first son Ty arrived, we LOVED being parents together and had a great family life! We took Ty everywhere. When we couldn’t, babysitters were easy to find so dates were frequent! We could talk more when we only had one son around. It was certainly less chaotic with one than three!

When we decided to grow our family, we found out we were having twins! From the moment we heard the news, we were emotional and scared. I was worried about whether I could DO twins. My husband worried about supporting a family of five financially! We never imagined that money would be the least of our problems. When twins Jayden and Zack were born, our little Zack was diagnosed with a genetic problem resulting in many medical issues, including a rare and life-threatening heart defect!

Our family and marriage were forever changed. From the minute Zack was born, we became parents to a child with special needs and advocates, doctors, caregivers and cheerleaders. At the beginning, we were united in our fight to save Zack's life – and love our other boys as if their life had never changed. In those first weeks, we were back and forth daily from the hospital. I would stay all day and Paul would visit early mornings and late at night. We barely saw each other, but we cared equally for our boys. There was nothing that I did that Paul wasn't doing – whether it was late-night feedings, diaper changes with Jayden, driving Ty to JK or housework. We were a team through the hardest time of our lives.

But as time went on and Zack's needs began to reveal themselves – controlling feeding and GERD, discovering his hearing loss, failure to thrive, seizures and physical delays – my role as Zack's advocate/caregiver/doctor became all consuming. I was ‘CEO’ of his little life and I put my all into it. I handled all therapy appointments, with Jayden in tow. I took both boys down to Sick Kids for follow-ups and juggled the feeding and naptimes of two very different boys. The rest of my energy was for giving extra attention to Jayden and Ty. That left nothing for Paul.

My life was a circus, as any mother of a child with complex needs can understand. But while it was stressful, it was also empowering! My wonderful and complicated son brought out so many qualities in me that I never knew I had. I liked feeling confident that I knew my son and what he needed most. I loved connecting with other parents in the special needs community and found comfort in starting my own blog.

At the same time, my days and nights were exhausting and I was overwhelmed. I look back on those days and truly wonder how I did it. I was isolated. It was so hard to leave the house with the twins, carry all of Zack’s equipment and be constantly on alert for the next seizure. My maternity leave was not what I had planned. No playgroups, music classes or baby yoga time. We moved from appointment to appointment and our house was a revolving door of therapists.

I was desperate for adult contact and I was jealous that Paul had it. When my tired husband walked in the door I wanted to talk to a grown up. He wanted to stop talking after a day full of it.

Zack’s needs continued to grow, including insertion of a g-tube. Meanwhile, I grew more resentful, depressed and grumpier!

Why did I feel so alone in this? Why did HE come home for playtime and I had the hard work? Why was I the only one going to important appointments, fighting for our son to get services and caring for our three children? More and more I stopped asking for help from Paul and just did it all myself. Many days I just wanted a “thank you” from my husband, since my son didn’t have the words to say it to me. I just wanted to be appreciated. In fact, I really wanted to be a wife, not just a ‘mom’ and ‘nurse’ to my son.

At the same time, with our decision to give up my career to care for Zack, Paul became the sole breadwinner. He was consumed with his role of supporting the five of us and was exhausted when he came home. He put so much pressure on himself to succeed – meaning extra-early mornings and late nights in order to ensure his job was secure. He was great at helping with laundry and cleaning, but to me that was never enough.

Paul came home most nights in time for bath and bedtime with the boys and he loved playtime with all three, in particular Zack. Paul had been the one to travel with Zack down to the hospital his first night and he had been there when Zack arrested twice. What I learned later was that this was an image Paul couldn’t get out of his mind. It haunted him everyday – and still does.

Paul was exhausted and stressed to the limit. He had crazy demands at work and at home, a crabby wife and he didn’t feel his efforts to keep our family afloat were appreciated. Because I had taken Zack’s care as my priority, he felt left out of our son’s life and ignored. He had become my last priority.

Life, family and marriage were not what we planned. We were sad and overwhelmed by the magnitude of our responsibilities. But we weren’t able to see the stress on the other person. We were so wrapped up in our own daily priorities that we forgot and neglected each other and took each other for granted. We were stuck.

Our marriage was at a crossroads. We both had to change. The journey with our son had taken us to a place where we either needed to listen to each other again, make changes and put our marriage on our "to do" list, or we would become another statistic. We made a choice to make it work and be a team again.

Our first step was to get it all out!

We talked and talked about what we’d been feeling, drank a lot of wine, saw a counselor, read lots of fabulous books together and cried A LOT! It turned out we were feeling the same things: pressured, stressed, neglected, unappreciated, exhausted, guilty and even jealous. We acknowledged that we felt grief...grief for the loss of our dreams for our family and for our son. We were scared for Zack’s future, the future of our other two boys and ourselves.

Paul had never really spoken the truths about Zack’s delays and health issues. While I was living them each and every day, Paul had never used the word “special needs” when referring to Zack. Through this process he learned to accept the diagnosis and the words that came along with our reality. I realized that I needed to begin to let Paul into that world, not shelter him from it. He was willing to share the burden of the tough visits so we did the “big” appointments together. Paul became a partner in Zack’s journey and I accepted his help, so that I could have time to be a wife.

It was great to finally be listened to and to be a listener. Feeling vulnerable and being totally truthful reminded us of just how much we loved and needed each other.

I know that we are not the only couple who have been up against similar struggles. Having a child with special needs seems to amplify all the regular problems that a husband and wife go through. This might not have happened in your marriage yet, and it may not ever. But we wanted to share our story and some of the tricks that we found to allow our marriage to be the special, loving and long-lasting relationship that we both deserve.

1. Find books to help navigate your way through. Married with Special-Needs Children, More Than a Mom  and any of John Gottman’s books on marriage are our favourites. 
2. Admit that you both need to make changes to make this work. It takes two to create and repair your problems.
3. Talk to each other first! Speak honestly about problems as they exist and speak the truth – it’s hard to admit that you're frightened, sad, angry or even disappointed, but it can be liberating to have your best friend, your greatest love, be the only one to know how you are feeling. Share the good, the bad and the ugly.
4. Build a network of good babysitters and supporters. So easy to say but look everywhere – grandparents, godparents, neighbours, even nurses or nursing students can all be a great resource.
5. Date again and bring back the fun! A movie, dinner or if you are truly lucky – a romantic night or two away! Even a “home date” after the kids are asleep...turn off the TV, ignore the blackberry and reconnect! Flowers “just because” still make my days!
6. Find individual therapists, marriage counselors or spiritual advisors for regular or monthly "check-ins." You do this for your child, so why not each other? The needs of your child can be like a roller coaster and have peaks and valleys. Have supports in place for those valleys.
7. Give each other time to do the things that you love to do alone. For Paul, it’s soccer each Saturday. For me, a mani/pedi with some friends!
8. Be IN it together! While one of you will be predominantly responsible for your child's care, go to the BIG visits together, make the BIG decisions together and be advocates together.
9. Take one day a week to send reminders to each other! Send each other a text, email or letter with reminders from your past. What brought you together in the first place? Paul and I both look forward to hearing what attracted us first, what we admire in each other, our funniest story or even our most embarrassing moment together!
10. Renew your commitment to each other –  write a letter, poem or renew your vows. We were fortunate enough to have my parents stay with the kids so we could go to Vegas together. Paul surprised me with an Elvis wedding to reaffirm our vows, celebrate what we had learned about each other and get excited about our future...whatever comes our way!