Patch Blog: My life With Katie, the Aftermath

I have been procrastinating writing this. As if putting it down in the written word would somehow make it all real.

My husband moved out this week. We have been together for nine years, although married only two. Our relationship and marriage courtship is a very over the top soap opera saga that I will not bore you with. Although I expect him to be a fairly engaged parent, I am now on my own.

Today is my 40th birthday. A single mother of three young children is certainly not where I expected to be on this birthday. I truly expected to be in Las Vegas with my husband (and not the kids) having an amazing time. 

When you receive difficult news as my husband and I did about our daughter Katie and her diagnosis of Down Syndrome, the outcome can go one of two directions. It can either strengthen your marriage in ways you never thought possible, or it can make every slight blemish seem catastrophic. My marriage ending is not what I had expected or wanted.

Having a child with Down Syndrome is not what I had expected or wanted. It would be easy to put a “but” here and say something like “But now that she is here we wouldn’t have it any other way. She is a blessing.” Of course I wouldn’t have it any other way and of course I know she is a blessing. But at the same time, it is hard not to beat myself up over the “what if’s.” If I didn’t get pregnant, would I still have my husband? If we didn't get the diagnosis, would I still have my husband? If I had made the decision to terminate the pregnancy, would I still have my husband? 

The hard sell from my doctor and my husband to terminate the pregnancy came almost immediately. My periontologist's method of trying to convince me was crass and medieval. He stated I should think of my other kids and how it would affect them. I should think of my own future and how I would be this child’s primary caregiver for the rest of her life.

At the end of that doctor appointment, I was given two days to make up my mind if I was going to have an abortion. I thought about my other children and the life lessons of patience, understanding and love having baby Katie in their lives would bring them. I thought of myself as her caregiver, and I couldn’t think of a more meaningful way to charge through my life.

My husband’s campaign for me to terminate was much more subliminal. Let me just say now that my husband loves Katie with his entire heart and now that she is here I know he can not imagine life with out her. But as with many people who receive this kind of news, the unknown can be terrifying. He reacted with long absences from his family and had a curt manner and short fuse with me at all times.

For me the news was devastating. My shock and grief went on for several weeks. In fact, I was sad for the rest of my pregnancy.  Even with all the blessings I knew would be coming my way with the arrival of this child, I was drudgingly sad. But not once did I ever consider termination. 

In the weeks after I made the adamant decision about not having an abortion, I found out that there are a higher percentage of women who are in their twenties having children with Down Syndrome than women my age. This is because women over the age of 35 are given a huge laundry list of tests since they have a higher chance of birth defects. Older women who find out the results of these tests have the option of choosing to continue the pregnancy or not. Many are choosing not to go ahead.

I am not here to judge anyone. You have to know yourself pretty well to make this kind of decision, either way. It is not easy. Oddly enough it was for me. Although my husband and I had our issues, I did not think for one minute we were in jeopardy. It is unfortunate that I was wrong. I could go on about how unfortunate the last year has been. How age 39 is a year I would never want to relive. 

But it is now a matter of waking up every morning with a smile or at least a smirk on my face to show my children that everything will be OK.  When my three girls are together, my older ones are always trying to make Katie smile. Her smile comes from a place of trust, security, hope and love. I wish I could say I am able to radiate all of that every second of every day. But at the moment I am falling short.

Katie is now four months old. She is healthy and making significant strides everyday that we (I) did not expect possible. We (I) have been fortunate in that Katie’s health issues have not been life threatening just life refocused and intensified. 

Every bowel movement has to be mentally charted as to frequency and substance.  Many children with Down Syndrome have rectal muscles that are not as strong.  For Katie that means constipation and hard stools. We (I) began giving her prune juice twice a day to help soften her daily output. Unless a more serious condition arises because of this, she will continue having her morning and afternoon juice cocktail for the rest of her life. Not to bad considering what other problems she could have.