Hard Conversations about Down Syndrome

The other day, I had lots of emails to answer, things to check off my lists, and meetings to attend to in the afternoon. Nino was out of the house early with meetings as well, and it was suffice to say it started out as a typical busy summer day for a mom who likes to multitask. 

I had to head over to The Viking Kitchen later in the evening for some special guests who were joining us for dinner, I had to try and get my schedule in order for the rest of the week. I also had to find the time to go food shopping and prepare an apple pie.

I whipped up a simple lunch of pan fried Italian sausage and peppers and some roasted garlic new potatoes so that we could all sit down for lunch together before Gelli had to take a nap. I brought out my favorite bread from BCC that is fruity and nutty at the same time in case I wanted to cheat a little and have a small piece with lunch, despite my wheat intolerance.

 

We were all talking and teasing one another, and I must admit I was enjoying the lighthearted banter that was going back and forth across the table. Gelli was doing pretty well while we were all eating together because even though she was full, she did not throw any food at anyone. (We are working on this. Promise.)

After Gelli got up to play, Miguel turned to me to ask if I knew that the life expectancy of someone with Down Syndrome is different than the life expectancy of a typical person. In other words, he asked me if I knew that someone like Gelli might not live as long as a typical person.

I explained that yes, because of their extra chromosome, that someone with Down Syndrome has a life expectancy that is slightly different, but that Gelli can live well into her 60’s as opposed to how it was before. (Years ago, someone with Down Syndrome might only live to sometime in their 30’s.) 

There was a silence that fell on the table.  It was heavy, and sad, and contemplative.

Gia and Miguel were digesting what I had just shared, and without thinking, I shared another sobering statistic. This was a statistic that kept me in bed…for three days while cuddling my baby when she was less than 6 months old.

Through a website, back then, I had read about the chances of Alzheimer’s and people with Down Syndrome. I shared this statistic with my children, and Gia began to cry. Miguel said he couldn’t finish his food anymore and when Diego came back to the table after playing with Gelli, (when she went up to take her nap) he could feel the shift in energy at the table and he started to ask what was happening…why were we all so sad…and why was Ate crying.

I also took the opportunity that as sobering (or maybe even depressing) these statistics are, that these numbers are teaching us quite an important lesson. (There’s always a lesson.)

I didn’t want my big kids to be sad about the possibility that Gelli might develop Alzheimer’s at a young age. I wanted them to understand that all of our time is limited on this earth.

We don’t know how long ANY of us will be here…but knowing what we know now, simply because Gelli chose us as her family-makes it even more important for all of us to be grateful for every single day we are given. 

I also shared that it is important that they LOVE EACH OTHER, and love their baby sister all the time, at the same time being grateful for her good health, and her presence in our lives.

After the kids stood up from the table, I whispered a little prayer of gratitude for ALL of my kids. For if I know anything…I know that they will take care of each other, and look after one another, long after I’m gone.