Last week I left us with a challenge – “Let’s each take a moment today and ask ourselves what is one thing I can do this week to reinforce the foundation of my marriage and show my spouse that they are my number one priority and focus (after our relationship tie God of course).”
How did you do? I heard from some of you who were thinking about it. That’s a wonderful first step. I too, though I wrote it, needed some time to ponder how to implement that myself. For me it came down to voicing my questions or expectations to Jerry rather than expecting him to read my mind. For me that reinforced our foundation that though we are “one” we are still two individuals created male and female. For me to expect him to know what is going on in me is unfair. Bringing those thoughts into the open strengthens our foundation with increased communication.
Now on to this week, and the impact disability has on marriage. When one boils down the various ways disability impacts a family, there are two ways:
1) Becoming a Family affected by disability by choice. Examples include marrying a spouse you know has a disability, marrying someone who has a child with a disability, adopting a child with a known disability.
While this couple knowingly enters into marriage and/or the world of disability seemingly with “eyes wide open” the full understanding of the daily relentlessness of disability on the marriage and family is often not realized until further down the road.
2) Becoming a Family affected by disability by surprise. This occurs when a child is born with a disability, a child or spouse encounters an illness or injury that leaves them with a disability, or the process of aging may create an unexpected disability.
Both ways of engaging in family life and marriage affected by disability can bring about a wide variety of impact to each member of the family. Among the couple experiences may include:
- “Super Hero Complex – I can fix this; they can’t make it without me
- Blame Game – Why did this happen to me/you/us? What did I/you/we do wrong?
- Out of focus care – life revolves around the special needs, ignoring self care, no time or energy left for spouse, the rest of the family takes a back seat, exhaustion rules
- Divided parenting – one spouse becomes the parent to the child with a disability leaving the other to parent the typical children.
- Woe is Me – allowing pity (from yourself or others) to reign because your life is so hard
- I’m trapped – resenting spouse or others because their life is so much easier (at least we think it is) and you are living the martyr role
- Increased character – built into each member of the family as they work and live with a sense of partnership and togetherness, and serving one another in love.
When disability is part of a marriage there are two options: face the challenges together and grow, or become resentful that your expectations are unmet and choose to go your own way. Of course these options exist in every marriage – regardless of disability. Disability serves as a great magnifier to the underlying foundation and character of the couple.
So how about you? Would you share which of the experiences bulleted above you have experienced in your marriage? Or perhaps you can identify a different way that is not included above. I would love to hear that. If you would rather not share publicly in the comment section below feel free to email your response to joan@joanborton.com and I will post it with a pseudonym, keeping your privacy.
Soon after we moved to PA we met a couple who had been married more than 10 years with disability joining their relationship within the first year of marriage. They had NEVER met another couple affected by disability until they met us. They felt so alone. We need one another, please don’t think your response doesn’t matter. You may have the words or experience that will meet someone else who thought they were all alone in this journey.
It began with a diagnosis in 1997. My husband and ultimately both of our daughters were diagnosed with a rare genetic disorder. Over the past twenty years our lives have changed dramatically. Countless hospitalizations. Surgery. Recovery. Complications. A new normal. Repeat. Repeat over and over. Our youngest daughter was about 6 years old when the cycle began and she admits she does not remember her father being healthy. His health and physical abilities have continued to decline. More than half of our 32 year marriage has been affected by his disability. It has not been easy. It seems like we are continually adjusting to a new normal. Yet, through it all, our love and devotion to one another has stayed the course. We are grateful for the simple things that we can share, whether it’s a quiet cup of tea or a favorite movie. Chronic illness has had a profound influence on our marriage but it has also taught us to appreciate even the smallest of victories. And yet, the loss of our dreams, the isolation, the exhaustion, financial strain, frustration, etc. is all real. I am not going to deny it. Couples dealing with chronic illness or disability have a unique set of life circumstances to deal with. It is time that is recognized.
Thank you Valerie for sharing some of your story. I love the way you hit on the blessings and challenges of life. Yes, constantly adapting to new normals is exhausting. It is my hope that we develop a community here to encourage one another!
How did you and Jerry met?
We were both invited to the first conference of the CCPD the year after it was formed. We continued then, as you know, to both stay involved year to year which grew our friendship.