Gracie's Grace

Brien and I just ended our eight-week bereavement support group through UCD Hospice program. We learned so much and met a very small group of amazing people who had also lost young children. One night of the group was devoted to discussion and ideas on how to memorialize our children. For us, one of our recent accomplishments was completing her grave site memorial.

We recently found out that one of our friends had also decided to memorialize Grace in her own special way. Our friend, Sarah gave us an amazing gift the other day, it was a notebook with several hand written letters to us from her son's sixth grade class members. Brien and I cried as we read the heartfelt letters written by such tender and innocent children. Sarah later shared with me that she started a behavior incentive program for her son's entire class. She calls it Grace's Grace..an Act of Kindness Program. Three days a week she goes into the classroom and rewards the children with pink (Grace's favorite color!) raffle tickets whenever she sees acts of kindness or great behavior. She tells the children that she ignores bad behavior and rewards only good behavior. She then has a raffle at the end of the week for prizes and she also gives out two other awards, MVP= Most Valuable Pupil and MIP=Most Improved Pupil. Sarah also calls the students' parents to congratulate them on their accomplishments for that week.

I guess the students eventually became curious and started asking who this "Grace" baby was and what had happened to her. So, Sarah gave them an assignment to read one of our blog entries and then to write us a letter. She asked them, "What would you say to comfort these parents?" Everyone who participated got one of those prized pink raffle tickets. I must say we truly enjoyed reading all of the letters and I was amazed that children at that age could have such compassion and to be able to convey that compassion through writing was a wonderful thing to see and experience. Even more wonderful to us was just knowing that Sarah and the students are memorializing Grace in such a special way, and that touches us very deeply. So thank you Sarah, Austin, Rachel, as well as all of the talented and special students of the Sixth grade class at Pacific Technology School. Your thoughtfulness and kind words have meant the world to us. Grace is very proud of all of you!

Remembering Grace

Grace is never far from our hearts and minds. There isn't a day or hour that goes by where we don't think about her. So for us to remember Grace is easy. Fortunately, we tend to remember all the happy times. The simple moments we all take for granted in our busy lives. Like bath time, smelling her sweet soft hair and those little cute smiles that brought us so much joy.

One of the things I've discovered at our bereavement group is we all appreciate it when friends and family still want to talk about our lost loved ones. That is probably the one uniform thing we all agree on. Before all of this happened if I encountered someone who had lost a child I probably would have avoided talking about it for fear of upsetting the person. But what I've learned is it's actually the opposite. It means so much to the parents of a deceased child to know others still think about him or her and want to talk about them.

I was reminded of this yesterday when we went to the cemetery to visit Grace. We noticed someone had left two red roses there. And I couldn't help but think about all the times we've come out to visit her to find someone had been there and left something special behind. To Holly and I this is probably the greatest gift and form of support anyone can give us. Knowing you still think about her really touches Holly and I. To know others have not forgotten her is what helps Holly and I heal. So we hope you will continue to visit Grace and feel comfortable talking about her with us. It won't upset us; it makes us happy that you still want to talk about her.

Grace will always be with those who loved her. She taught us all a valuable lesson; to cherish the ones you love and never take your loved ones for granted.

Is the glass half full or half empty?

Today, Holly and I met with Dr. Lipson, Grace's Geneticist. It was a meeting we've both been looking forward to and dreading all at the same time. With all of her genetics testing finally done it was time to sit down and go through everything.


The first thing he did was hand us a sheet of paper with every test that was done. I have to admit, it was quite impressive. Most of the completed tests said the same thing, "no mutation found." Even so, there were still a lot of tests that weren't done due to a lack of blood and urine. He's been in touch with a couple of the labs to see if there is any blood remaining. If so, we might run some of those tests or send the samples off to researchers I'd been working with.


Because no root of the EMEE was found it's really anyone's guess to what brought it on. It could be Idiopathic, which Webster's defines as relating to or denoting any disease or condition that arises spontaneously or for which the cause is unknown. But most likely the origins of her disease was a recessive gene in Holly and I. What this means is if we have another child there is a 1 in 4 chance he or she would have the same thing. As you can imagine, this has been just heartbreaking news to us.

I guess that's where you have to ask yourself, are you a "the glass is half full or half empty" type of person. This is where Holly and I are right now. I view it as a 25% chance we could have a baby with the same disease and Holly sees it as a 75% chance we'd have a normal baby. So as you can see, we view the odds quite differently.


It will take time to deal with this impasse between us. I'm sure Holly will write her own post on how she's feeling right now too. But for now I wanted to share where we are at this time. I know there will be many more conversations between us. I hope we can find some peace and direction for our future.

A Fitting Tribute

On Monday, we installed Grace's monument. It concluded months of planning and coordination in the creation of her monument. Because of the importance of her monument to us I was actively involved throughout the entire process. The owner of the monument company and his assistant did a wonderful job. They made sure no details were missed.

Due to our weekly visits to her gravesite we have become acquainted with the cemetery personnel. Joe, one of the cemetery groundskeepers stopped by to say hello. He said her marker was the most beautiful one in the baby section. Which made me happy to hear.

Her monument was actually completed a couple weeks ago, but we had to wait for the weather to clear up before we could install it. So Holly and I have been anxiously waiting for this day. There are so many emotions associated with having it done. Words like joy, peace, pride and satisfaction all come to mind.

She's located at the entrance into the Garden of Angels. We call her the "Greeter" and now she has a fitting monument for that role. I think it kind of bothered me to visit her gravesite and see a temporary 3" x 5" marker. So to have a permanent monument that embodies her feels good.

Our graphic artist Sara and I designed the monument. Holly and I wanted something that was designed exclusively for Grace that had special meaning to us. The bronze plaque was made at a foundry in Utah. We then had a local monument company order an Indian red granite marker and mount the plaque to it. We're both so pleased with the way it came out. We hope you'll stop by for a visit and see it firsthand.