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Raising children with disabilities and how it can affect a marriage

Summer is such a busy time for my family as it is for all families with children.  I’m sure my readers have noticed I have slowed a bit in my postings on my blog.  I really hadn’t intended to change the pace of my writing, but can’t believe how quickly time slips by.  I was checking the date of my last entry and was stunned to see how much time had already passed.

Making me even busier than usual is the fact that my husband is out of town for more than a week.  This is the longest we have ever been apart in twenty years of marriage.  Not only do I miss his company, I do find my task of keeping three children alive, healthy and happy that much more challenging as a “single parent”. 

Rob and I just marked our 20th anniversary and it seems like a good time to reflect on how raising a disabled child can affect a marriage.  When you get married and decide to have children, the image in your head is never the reality, even if you have a healthy baby.  Babies are demanding and exhausting.  We are inundated with photos of perfectly fit celebrity moms traveling the world with their children and we learn quickly that is far from reality.  Without nannies, personal trainers, and assistants raising children is a full-time job that usually requires putting your personal health, fitness and sanity on the shelf for quite some time.

For those of us who are raising children with disabilities, the strain of being a good parent to our other children, a good wife to our spouses and a parent who can handle the daily stress of raising a child with exceptional medical challenges can be immense.  I have seen many marriages fail under these circumstances.  I did not know when I married my husband what kind of a father he would be…we were young and idealistic and hadn’t faced a single challenge in our lives.  There was no way to even begin to predict what kind of partner he would be when faced with the circumstance of watching his firstborn, healthy daughter fall completely apart medically immediately following her first vaccination.

We struggled with guilt, exhaustion, denial, fear, grief.  We had to readjust our hopes and dreams, I had to give up a career I loved, my husband had to make career decisions based on what was best for the family instead of what was most personally fulfilling,  and our personal fitness and well-being became a distant concern. We had to learn to develop a supportive and loving relationship with each other despite the difficulties that  we faced.  We had to decide together that this would not take us apart but would make us stronger.  In twenty years we have had some dark days, to be sure, and even now we make sure we take time to take care of each other as well as our children. 

I do not presume to have the answers to how to hold it together when you face such a tremendous crisis in a marriage.  We muddle along the best we can.  But, if I do have any advice to share it is this…raising a child with disabilities is hard.  It’s messy and scary.  Do not let high-profile, successful moms raising children with disabilities, like Jenny McCarthy or Sarah Palin, make you think that it is realistic to have it all.  There is a trade-off with every decision they have made.  Do the best you can and be proud of who you are.  Just as we see our children to be beautiful and smart and delightful we must view ourselves the same way.

Twenty years with my husband is a gift that I will not take for granted because for us this is just the start!

Tags: children, disabilities, parenting, vaccines