As caregivers for children with special healthcare needs, we often find ourselves pulled in many different directions trying to create the best possible life for our families. In many cases, the needs of our children are so great that taking the time to nurture other relationships, including our marriages, can feel like a luxury we can’t afford. We want to encourage couples to think differently about that. In reality, a healthy marriage can produce the resilience needed to endure the highs and lows of being a caregiver. Having a partner to lean on in the tough times and celebrate with when progress is made is huge as we try to stay in this race.
“A healthy marriage can produce the resilience needed to endure the highs and lows of being a caregiver.”
We’ve been married since 1986 and have two adult children – Justin and Hali. Hali was diagnosed with a seizure disorder as a young child along with other physical and cognitive challenges. Those challenges changed the course of our life forever. As a result of those challenges and the lessons we’ve learned along the way, we started working with other families who have children with special needs in 2000 with an emphasis in helping couples maintain healthy marriages in spite of the additional challenges that come with being caregivers. I (Brad) am a Licensed Professional Counselor. Karen had finished all of her classroom work for a Master’s Degree in Psychology before our family situation forced her to set that aside for our family. Together we have developed several programs to support parents in the journey with their children, including a marriage retreat titled “Beyond Our Dreams” that is specifically designed for couples who have children with special needs.
Life with Hali over 28 years has taught us many things. Trying to find the help she needs has certainly produced a significant amount of stress for us and our marriage. There have been times in hospitals where we played “tag” with each other being with Hali, working, and taking care of things at home including trying to be good parents to her brother. He didn’t ask for these challenges either and yet his life has been greatly impacted by having a sister with special needs. And we know families who experience this game of “tag” far more regularly than we do.
Every individual deals with having a child with special needs differently. As a man, husband, and dad, I see and experience this very differently than Karen does as a woman, wife, and mom. While on the same journey, these differences lead us to be in different places emotionally. This can be positive in that the things that discourage me or produce anxiety for me are not usually the same as for Karen. The down side of that can be that when she’s not feeling the same way I feel – or vice-versa - it can lead to negative thoughts about each other.
“While on the same journey, these differences lead us to be in different places emotionally.”
We don’t ever want to downplay the priority of the roles of Mom and Dad, caregiver, and provider. But we want to encourage couples to fill those roles from a position of strength that comes when we prioritize our marriage. Far too often we see marriages degenerate into something that looks like a small business partnership than an intimate relationship. Our time together can start to look more like a staff meeting where we budget our time and other resources to keep the business going. I can tell you that is not why I got married! And Karen would have fired me a long time ago because I am not a good businessman!
In our work with couples, we stress the importance of maintaining space in our routine for “Us” – the unique relationship identity between husbands and wives that has to be cared for. As mature adults, we should recognize that the challenges that come with a child with special needs are going to make finding this time more challenging and probably even less frequent. But making sure that we are connecting regularly just for the purpose of taking care of each other will not only keep our marriage strong, that strong marriage will strengthen our ability to handle the challenges we face with our children.
A word of warning here. Our culture has diminished the definition of intimacy to mean sex. While the physical part of intimacy is important, it is only one part. Intimacy means being emotionally, spiritually, and relationally connected as well as being physically connected. And, I just have to tell you – if your spouse is emotionally exhausted, spiritually discouraged, and relationally disconnected their interest in a physical relationship will be almost zero. Being intimate means caring for the “whole person.” We believe that not taking the time to care for the “Us” in our marriage is the primary reason that divorce among couples who have children with special needs is so high.
As time moves along and seasons of life change, so do the challenges we face. Having a partner that we truly share life with is certainly a blessing as we navigate the journey.
A few of the lessons we’ve learned after 31 years of being married and 28 years with Hali:
1. THIS IS A MARATHON, NOT A SPRINT.
Caring for a child with special needs is a long-term commitment that will require a great amount of resilience. A healthy marriage can go a long way in building and maintaining that resilience.
2. THERE'S NO ROOM FOR SELFISHNESS.
To be a good, healthy spouse and caregiver we have to develop a servant’s heart. This does not mean becoming a martyr. In the long run, martyrs don’t serve anyone.
3. WHATEVER YOU DO, DO IT TOGETHER!
However you define your roles within your marriage and family, don’t use it as a measure for who does more or who is more important. Do it because it’s your best contribution to your family being its best.
4. HAVING A CHILD WITH SPECIAL NEEDS DOES NOT HAVE TO BE A DEATH SENTENCE FOR MARRIAGE.
It will require effort and special attention at times, but “happily ever after” is still available!
More articles from Brad & Karen that delve deeper into their work as counselors across topics such as: making other children (siblings) without special needs feel special too; being a single caregiver; stress and the caregiver burden; and more.