The Mighty Challenge....
Marriage and special needs parenting: it’s a topic not often discussed, but it’s important, and it deserves more discussion in our community. Can you share a moment on your special needs journey that strengthened your relationship?
I've thought about this topic quite often over the past couple of years. When we received Adele's diagnosis at 15 weeks, it didn't bring us closer together, but it definitely got us talking a lot more. The discussions weren't always light and fluffy, they were usually a bit tense and at times, frustrating. I read once that having a special needs' child, it brings couples closer together and that the divorce rate is substantially lower. Lower? This truly confused me.
Adele was born one month after our town was flooded; we were living with my parents, while our house was being rebuilt. I understand that we had extenuating circumstances that led to more stress, but after Adele's delivery, we were consumed by NICU visits, getting our home fixed and the stress of being grown adults, living with my parents.
Adele spent 6 weeks in the NICU; when we brought her home, we were anxious and still concerned about her breathing. We were focused on contacting FSCD, filling out government forms and trying to keep a newborn healthy. Once we got into a routine, we made sure to contact the necessary supports in the community and began occupational therapy and physical therapy out of the home. When Adele was born, Brinley was not even 17 months old, so we had two babies, one of them required more attention and time. Some days, we both felt overwhelmed and would take it out on each other. The stress of having a special needs' child, would sometimes consume our days and nights. There were times that I would lay awake, beside my husband, who had really turned into my buddy, my pal, my friend, and I would listen to Adele's breathing. I gained more weight; eating because I was stressed and worried and sad.
Marriage success rates are higher when you have a special needs' child?? I still didn't get it.
Adele spent some time in the hospital. They were only brief stays, but James and I were like two ships passing in the night. One would spend the night at home, then we would do a switch the following night.
I remember the first time that Adele spent some time in the hospital. We had recently returned back home from our 3 month stay at mom and dad's house. Adele's breathing was a bit laboured and her colour was off. My gut was telling me to take her in. My sister came with me. Our hospital was sending Adele by ambulance to the Alberta Children's Hospital. I had to take my car, so that I had some form of transportation, as the hospital is over an hour away from where we live. My sister and I stopped off at my house to pick up some stuff for the night's stay. I was short with James, I was mad at the world, I was frustrated and worried about my newborn baby. I was angry that she was sick. I was angry that I had to spend the night away from home. I was angry that the journey was taking another turn, one that wasn't expected. My sister told me that I wasn't being very nice and that it wasn't James' fault. I knew this but he's my husband, he's the one who I take my frustrations out on, he's the one who has no choice but to listen to my fears, my anger and my upset. He is my husband.
Our schedule is full. We have Brinley in extra-curricular activities. Adele receives therapy twice a week, two hours at a time plus she has other appointments at the hospital. I also try to have a life outside of my family and manage to fit in dinners with friends a few times a month. Where do you find the time to make a marriage work?
So here we are, 21 months into this journey. We have come to a place of comfort with Adele, which in turn has lessened the stress in our everyday lives. We worry a bit less with Adele, not completely, but it's less. We laugh a lot more and appreciate and enjoy the days with our beautiful children. We hug and snuggle and cuddle and revel in the excitement and love that our children have for each other. We stop, relax and are thankful for two healthy girls.
James and I have found a way to become a husband and wife again. We used to fall asleep holding each other's hands; we have started doing this again. We not only tell each other that we love and respect one another, we show it. We have slowed down. We work together as a team. We both take care of our home and we show the girls daily, the importance of family, a happy, healthy family.
We are on 4 journeys in this house; one with each other, one with Brinley, one with Adele and one as a family.
The journey with Adele.....
She has brought peace, joy, love and happiness to our family. She has brought light and laughter to those around her. She has taught our family about respecting others, about slowing down, about appreciating the journey that others are travelling.
She has strengthened the bond between James and I, although in the beginning, I feared that this unknown journey was placing a wedge between us. She has taught James and I that our girls need us to be strong, to love with all of our hearts, to give them the home that they deserve. I watch James with his girls and it brings me to tears. Our love for our girls is equal but when I see James interact with Adele, there is always a special moment, it may only last a few seconds, but in that moment, they look into each other's eyes and you know that there is bond that will never be broken, it's a bond that no matter what, he will always be there for her and take care of her and love her unconditionally. These beautiful moments strengthen our marriage. When Adele can't sleep and James snuggles with her late at night, this strengthens our marriage. When Adele laughs hysterically and her dad joins in, this strengthens our marriage. The moments are many and are savoured and cherished.
The journey is rewarding. The journey takes work. The journey is filled with ups and downs but it is our journey and we will walk this journey together.