"Walk of Remembrance"

Through this experience of having Connor, Spencer and I have met many kind people. One of them is Carolyn Kasteler, a nurse for a program called "Angel Watch."

On the day of our amnio, a genetic counselor came into our room and spoke with us. We already had a strong feeling that Connor did indeed have Trisomy 18, though we would not have the FISH results for three days and the official results for another two weeks.

This genetic counselor mentioned Carolyn and a volunteer group called "Angel Watch," and within a few days she made contact with us. She and Kay came to our home several times to meet with us, to find out how we were doing emotionally with our news, and to give us ideas of how to prepare ourselves and our children for the coming events.

It was Carolyn who presented the idea of celebrating every moment we had with Connor, of taking pictures of all the places we went and of talking about him with our children. It was all wonderful advice which we tried to incorporate and I'm so glad we did.

Carolyn & Kay have the tender job of meeting with families like ours, whose little babies have a fatal diagnosis. Year after year they meet with families all over the state of Utah, trying to prepare them as best they can.

Since Connor died, I have spoken with two families whose sons have the same or similar chromosomal disorder, and I have cried for them. I cry for people I don't even know. I cry for the sweet experiences they will have and for the pain they will feel afterwards.

And I wonder how Carolyn and Kay do it.

But I am so glad they do. I has been so helpful to our family to have had them in our home, to guide us, give us reading materials, to give us ideas, and to just listen. Carolyn helped me pull out of my initial shock and grief, enough to realize that I only had a few more months of carrying Connor inside of me, and that every day was a day to celebrate the life of our little boy. It was she who pointed out that he was alive, he was a part of our family, even though he had not been born. And she's right.

I received a note from Carolyn a few weeks ago- "Angel Watch" is at risk to be cut from all funding. If it were to be cut, what resource would people have?

Here are a few things coming up for those of you who are in the Utah area -

"Walk of Remembrance"
Saturday, May 9th
Thanksgiving Point, Lehi, Utah



Meet at the tulip gardens at Thanksgiving Point from 8:30 to 10:00 am. A short program will start at 9:00 AM. Refreshments will be served and there will be time to walk through the tulips and remember your little one.

This walk is done annually and is sponsored by Intermountain Healthcare, Utah Valley Regional Medical Center and others...for all those who have alost a baby due to stillbirth, miscarriage, or neonatal death.

It is done annually on the Saturday before Mother's Day.

If you'd like the name of your little one announced in the program, let me know and I'll forward the contact info to you.

also...

"Running With Angels 5K Walk/Run"
Saturday, May 16th
Thanksgiving Point
8:00 AM

All proceeds of the race are to go to Angel Watch to support the program.

here's the link: www.runningwithangels.com or if you'd like to make a donation to Angel Watch, their link is: www.mckay-deefoundation.org

If you live in a different state, know there are similar programs, just using different names. But all designed to help families who won't get to take their little ones home.

I think about my sweet aunt who lost her two little boys 30+ years ago, she did not have the kind of support I have had. I know I still feel alone at times and she must have really felt alone.

Angel Watch wasn't around then, but I hope a neighbor or a sweet friend who had experienced a loss was around to cry with you. Thanks for all your emails and the Easter card you sent to us Aunt Sue.

- Jennifer