When bad things happen...

I belong to an email support group for parents of children with rare trisomy disorders. I haven't been very active in this group over the last year or so. Caroline has been doing fairly well, and I have just been caught up in all the other stuff in my life - my kids, my photography etc etc.

In the early days, when Caroline was just a tiny (and I mean TINY, like 4 pounds) struggling baby, I found this group and it quickly became my lifeline. Seriously. To find a group of parents who knew exactly what I was going through was amazing. And when they were able to provide insight and suggestions for my questions on meds and tube feedings and seizures. I knew they were a Godsend.

There is a mom on the list that I felt particularly close to. She is such a kind lady and her daughter (diagnosed with trisomy 18) was only a few months older than my Caroline. When I became pregnant with Kallie, she also soon found she was expecting her first "after trisomy" child. It was a scary and exciting time and it was so nice to have someone to share all those fears with. We both delivered healthy baby girls within a few weeks of each other. It was an incredible experience that only someone who been in the same situation can truly understand.

This morning, I woke and went to check my email before starting my day. I noticed a message in my group from my friend. And the subject was "with great sorrow". I couldn't believe it. I read through the email in shock. Her daughter (with T18) had been fighting a cold and fever. It wasn't anything too unusual and they weren't too concerned. However, a few days later, when her breathing became odd, and she decided to take her to the hospital. As they were driving, she looked back and realized her daughter was completely unresponsive. She pulled to the side of the road, completely frozen with fear and knew her little girl was suddenly gone.

My friend is obviously in despair. She is also trying to help her 3 year old understand where her big sister is. She knows her sister is now running and laughing and talking up in heaven. But she still wants her sissy home with her.

This really hit me so hard today. Many parents in this group have suffered losses over the years. Most children with rare trisomies don't survive birth, let alone long after. This little girl baffled the experts when her "fatal condition" allowed her to live over six years. Even though we all know our little angels don't have the life expectancy of a "normal" child, it still hurts just as much when another is lost.

I woke Caroline for school and she just smiled and laughed as I kissed and hugged her way more than usual. I know people often question why bad things happen. I honestly feel that, as hard as it these times are, we need these time to give us the shock we need to remember that life is so precious and so fleeting. When things are good, it is way too easy to get caught up in every day life. It is often only after we are hit with the "bad things" in life that we realize we all need to kiss and hug our loved ones way more than usual every single day. Unfortunately, it is a reminder we probably all need.