Friday, July 13, 2012
Monday, July 2, 2012
I remember taking this picture (left) shortly after Grace was born. I came home to get some more clothes and check on him. I decided to bring home one of Grace's blankets so he could get familiar with her scent.
From the very beginning Bodie was always very gentle with her. He would sniff her, but that was about it. I think he knew she was very young and fragile. Perhaps dogs have a sick sense about such things.
The morning Grace passed away Holly and I were kneeling next to her crib, Bodie was right there between us with his nose buried in between the slates of the crib. It was the last time we were all a family.
After she passed it was Bodie who helped us through those oh so painful weeks and months. He let us hold him tightly and shower him with tears. You could tell he knew we were in great pain yet he continued to always be there for us. Without a doubt, Bodie was our saving Grace during our darkest times.
Here's to many more years of companionship and joy, we love you Bodie!
Sunday, April 15, 2012
Sunday, February 5, 2012
Last July, for Grace’s first birthday, our friend Renee gave us a beautiful scrapbook filled with wonderful pictures and memories of Grace. She put so much thought, time, and effort into it and we couldn’t have asked for a more beautiful tribute to our precious angel. Renee left some of the pages blank so that we would be able to add our own memories as well. It’s taken some time, but finally, last weekend Brien and I trucked down to Hobby Lobby so I could find some materials to finish the blank pages.
I’ve never attempted any type of scrapbooking activity before so the whole idea was quite overwhelming! Hobby Lobby had probably about five isles dedicated to scrapbooking supplies so it was tough to know where to begin. Luckily, I took some pictures of the blank pages before we left to try and match up some of the colors of the pages that needed finishing. Even more overwhelming were the emotions that overcame us while looking at all of the precious baby themed scrapbooking items.
Looking through all the stickers, I found some cute yellow ducks and bath time bubbles. I turned to Brien and asked if he would like to see a bath time page in her book. He didn’t say anything but I saw the tears instantly well up in his eyes. Bath time was his favorite time with Grace and she loved to have him hold her while floating freely in the water. I immediately felt bad for bringing up the subject because I didn’t want to upset him. Later, I realized that what I felt during that moment must be what other people feel when they ask about Grace or mention something about her that may make us tear up. What people don’t know is that we really don’t mind becoming tearful and we’d rather have this happen then for people not to mention her at all. Not talking about her would be like leaving those pages blank rather than taking time to fill them with the wonderful memories that we will cherish for a lifetime.
Tuesday, January 24, 2012
This isn't the first research study we've participated in, but it is the most comprehensive and advanced study we've been involved with. Let me start with a little background about The Manton Center for Orphan Disease Research. An "orphan disease" is defined as any disease, syndrome, or disorder that affects fewer then 1 out of 200,000 people, mostly children under the age of 2. Statistically speaking, less than two-dozen newborns a year in the United States have an orphan disease.
In 2008, Children's Hospital Boston received a $25 million grant from the Manton Foundation to establish the world's first and only center for research on orphan diseases. Children's Hospital Boston in conjunction with Harvard Medical School is home to the world's largest pediatric research facility. With 1,100 researchers and support staff, The Manton Center is the nexus of arguably the world's richest concentration of research talent.
Holly and I have been very protective of Grace's remaining DNA samples. We had very specific requirements before we'd use any more DNA for testing. Not only does the Manton study meet those requirements, it exceeds them.
They will also be doing some comparative testing with another family. In December, Holly wrote a blog title the 12 Days of Christmas Continued.... in which she talked about Sadie and Art. Sadie emailed me back in September after finding Grace's blog doing research on EME. They had a daughter, Eva, who was born in August 2010 and passed away in October 2010. She too was diagnosed with EME. Due to the extremely rare nature of EME/EMEE we were probably the only two families in the country caring for our daughters' with the same disorder at the same time. Being in Massachusetts they were fortunate enough to have Eva cared for at Children's Hospital Boston. The Manton Center has DNA and tissue samples of Eva that they want to compare to Grace. We feel so fortunate to have met Sadie and nothing would bring us greater joy to have our babies find the answers together. It would be the greatest gift they could give us.
We're very confident we're taking the right road. Even if no immediate findings are discovered, our participation will be in the hands of the world's finest researchers for years to come.