Not Alone

"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 �â'¬Å"normal�â'¬ï¿½ 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.

Many times parents of special needs children are so wrapped up in their child that they forget to give time, love, and attention to the relationship that gave them that child in the first place. It is extremely important to invest time into your relationship. Any relationship that is ignored cannot thrive. Try to have a date night once a week, even if it just means sitting in front of the TV watching a movie together (without children). Take at least 15 minutes a day to sit down and talk to each other about anything but your children. Share your goals and dreams that don't involve your kids. Kiss each other as much as possible. Taking that time to be with each other with out a medical discussion can be one of the best ways to cope with the situation. Yes, you have a child with a syndrome, but the syndrome is not your child, nor is it the ruler of your life and relationships.

Sometimes we all just need a break from the stress of raising a special child. You should take some time for yourself and allow your other half to do the same. It could be something as simple as taking a bath with your favorite music playing in the background to going on a weekend retreat with a few of your best friends. I usually feel as though I am a better wife and mother if I try to take a few moments for myself. It helps me to keep from getting overwhelmed with all that is going on in my life.

People cope with the difficult situations in their lives in many different ways. Just don't forget that you are not alone in this. Lean on each other. Love each other. Spend time with each other. Life does go on and it is meant to be lived to the fullest.