Thursday, May 7, 2009

Marriage and special needs children

There have not been many strong studies on the impact of caring for a child with disabilities on marriage, according to an article in the Wall Street Journal, which reviewed a such few studies. I have known quite a few families who care for children with disabilities who stay together, and of many single parents caring alone for a child with special needs, and know also that many, many of the children in foster care have disabilities. 

Does the stress and grief bring us closer than we would be if all of our child were typical? 

There are times when I know we would have been happier with a different experience. I could have lived my whole life without hearing the diagnosis over the phone. And there are times when  I knew I was with the right person. After getting the diagnosis over the phone, where else in the universe could I have been but in his arms?

But I do know this. Life would have been easier, but I have known many people with much easier lives who are unhappy. 

On the other hand, would I, would we, be happier without Rett Syndrome? Hell yes. I would trade every happy moment, my very life, for a cure. Take me, only take this from her. From us. 

Really, 'would we be happier?' is not a productive question. There is no imagined other happier life, only this one. All we can do is play the hand we hold and we hold hers. 

And I do know another thing: I could not have done this with my first husband. That marriage  could never have been improved with the stress of raising a special needs child. 

And this: If my marriage now has not been improved by the stress and grief of raising a special needs child, what has drawn us closer is our ability to hold each other in grief, to turn toward each other with compassion when one of us is ready to lash out or collapse, and to work together in adversity. And sometimes sheer stubbornness. 

As my husband says now while I write this: I suspect it is all in how people respond. 

It is about the marriage, not the children, not the stress, not the mortgage.

Do you have some tips for keeping a marriage strong while caring for a special needs child? Here is our starter list:
  • keep a sense of humor: raising a child is life in the theatre of the absurd. laugh. cry when you need to and laugh a lot. 
  • keep a united front: the outside world can be rugged. be each other's champions
  • keep asking for help: don't be to proud to use all the public and private resources you can, raising a special needs child is a marathon, and an expensive one. You may be doing this for a long time, and without help, the task can easily outstrip your financial, emotional, spiritual and physical resources.
  • take breaks. with each other, with your other kids, alone, with friends. build a community and let them refill your cup. refill theirs as well. make friends before you need them.
  • build a marriage team. Know which of your friends are also friends to your marriage. talk with them when it gets to be to much so that you have a safe place to vent, talk and problem solve.
  • know when to slam a door and when to let things go. apologize. forgive.
  • know when to get help or even to walk away: our pediatrician told us when we were spending hours walking a "colicky," inconsolably sick child that colicky babies are often abused. The same goes for children with very challenging behaviors. Protect yourself, protect your child. Get help, get away, get out before anyone gets out of control
Got ideas? love to hear them...