Not Alone

How to Cope with Your Spouse when You Have a Special Needs Child

"And the two will be one. So they are no longer two but one." Mark 10:8

It is every parent's worst nightmare: Learning that there is something wrong with your child. I remember that feeling all to well when a doctor told me that my son Luke probably had Cystic Fibrosis. I felt as though the room was shrinking, my brain went numb, and all I wanted to do was hold my baby and cry. It turns out that my son did not have Cystic Fibrosis, but a rare genetic syndrome called Shwachman-Diamond Syndrome. It was a very long and difficult road to diagnosis and there were many times that I almost forgot about the one person who understood how I felt the most. My husband.

When a couple is expecting a baby, you share your visions and dreams about that child. Who they are going to look like? What are they going to do when they grow up? When things do not go as planned and you have a child with a syndrome or an undiagnosed chronic condition it seems as though all of your hopes and dreams come crashing down around you into a big pile of hurt and pain. It is ok to grieve the loss of the child that you thought you were going to have, but do not blame yourself. When my son Josh was born with Down Syndrome, I was convinced that it was my fault. I felt as though I had let my husband down and that there was something wrong with me. Once or twice, I even thought that he might be happier with someone else. Someone who could have a �€Å"normal�€� child. My husband (God bless him) felt none of those things. You cannot deal with the situation and learn to cope with it as a couple if you are convinced that it is your fault.

One mistake that many couples make and should be avoided at all costs is blaming each other for what is wrong with their child. It takes two people to make a baby and, with most syndromes, it takes two carriers to produce a child with that syndrome. It is no one's fault. If you spend time blaming each other, then you cannot be the best parent for that child, nor can you cope with the situation in an effective manner.