I take you to have and to hold from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, until death do us part. I will love and honor you all the days of my life.
Twenty years ago, I stood in front of a church with a man I had dated for five years. We exchanged these vows confidently, feeling we could face anything together.
When reflecting on our wedding day, I remember the joy and hope in those two young people. The future was ahead of us. Many plans and dreams filled our minds, but neither of us could imagine the reality to come.
Photo by Leonardo Miranda on Unsplash
We have two children who are now both teenagers. Our daughter was born with Down Syndrome and a heart defect. She has had two open heart surgeries, a couple of heart catheterizations, and other minor surgeries. Respiratory issues plagued her health for years and caused us to be in many emergency situations. My husband and I have spent countless hours in the Pediatric Intensive Care Unit and in pediatric hospitals in general.
Over those twenty years together, we have faced stress and heartache. But we have also experienced so much joy and laughter.
It has not always been easy, but we have stayed together. Here are some words of advice that I have for other couples parenting children with disabilities:
1.You do not need to agree on everything.
Two people often look at situations differently. When making decisions for our daughter, the stakes felt higher, and our disagreements often seemed bigger than they were. One of us may be worried about an aspect of her development, while another does not care about it. I have often been the one who pursued new doctors, private therapy, and extra caregivers for our daughter. My husband may not have had an opinion or seen a need for them. Some of our more heated issues have come in the halls of a hospital as we have struggled to agree on what’s best for our daughter.
Here's the thing we realized many years in this process: we do not need to agree on everything. It is frustrating when there are different opinions, but there is usually room for compromise. We care about and love each other, which keeps us centered in heated moments.
2. Give each other grace.
Everyone needs to be cut a little slack at times. In our marriage, we have faced many high-pressure situations. Worries about health compounded by stressful medical emergencies have not always brought out the best in us. We realize that when stressed and exhausted, we may say or do things that hurt the other person. Things can happen, but we never set out to be mean to each other. We give each other grace in those times. After a conflict, we find time to discuss our issues, apologize, and forgive.
One thing good about being in the hospital for dozens and dozens of admissions is that we have had time to watch other couples. We have witnessed many spats in the hospital, most of which are over nothing. It helped us realize this is a common response to stress. We learned to recognize our situation for what it was and know that we need to show favor and kindness to each other at times when it may be undeserved. No one is perfect, and we both need to extend and receive grace from each other.
3. Make time for each other.
I won't offer the normal advice to go on dates. We are the worst examples of dating your spouse. It has not always been feasible to spend time alone or plan romantic dates. However, we make time for each other in other ways. We talk on the phone or text often when our work schedules are opposite of each other. Whenever we are both home at the same time, we have dinner together. We have a few shows that we both like and watch together—he usually has to explain them to me afterward! While the children are at a youth group meeting, we have a quick date. Every so often, we take a trip together and do what we consider a year’s worth of dates in a few days. In one way or another, we make time for each other.
I recall those early days of parenting and being fearful that our marriage would not be able to take all the stress. However, God has helped us stay rooted in something bigger than ourselves. Our relationship with God has certainly been the reason why we have celebrated twenty years of marriage.
If you are married with a special and/or medical needs child, I pray that your marriage stays strong. I hope you can love and appreciate each other through all the difficult situations that arise. May God can strengthen you through all the better, and for worse times.
Evana is a wife and mother of two children. Evana is a pediatric speech-language pathologist and serves children with autism, feeding disorders, and other developmental delays. You can connect with Evana on Twitter, Facebook, and her blog, A Special Purposed Life. You can also read more about her family’s story in her book, Badges of Motherhood: One Mother’s Story about Family, Down Syndrome, Hospitals, and Faith.
