This is the holiday letter that I sent to CHARGE families in our Christmas card exchange. I thought it summed up Joshua's year in a positive way. Joshua is doing so much from above that we cannot see, but know that his hand is in a lot of the joy we have, here is just a small example.
2009 was a very bittersweet year for our family. Last Christmas we were overjoyed having Joshua (CHaRGE) and Joey home with us. Joshua smiled and laughed his biggest Christmas morning giving us the best gift of all.
January we took Josh and Joey's 6 month pictures, and celebrated with a half cake! Josh had a bronchoscopy to see if we could start weaning him from his trach. No luck at this point, but we were optimistic.
In February Josh received his hearing aids, which made him look so studious. Unfortunately Josh also had some sort of infection where he was admitted to the hospital. He was here for a fairly long stay, and in the beginning part of March we moved into the Ronald McDonald House to be closer to Josh at the hospital. Josh was discharged, but readmitted just a few days later. On March 14, Joshua earned his angel wings and went to heaven at just 8 1/2 months. We have been so blessed to have him in our lives and have learned more than we ever could have imagined about life, love, and this wonderful CHARGE family.
In April, we decided to continue Josh's memory and share his stories on our blog through "Joshua's Journeys." We recall memories, procedures, and many pictures of his life here on earth. Our neighbors got together and had a tree planted in the park behind our house for Joshua and a placard with his name. It didn't take Joshua long to whisper into God's ear...we found out early this month that we were going to be expecting another baby!
July was the celebration of his and his twin brother Joey's first birthday. We were delighted to have another CHARGE family help us celebrate (thanks Crystal and Eva!) and remember the life of Josh. Later in the month we attended our first CHARGE conference, an experience we will never, ever forget. It was so comforting and heartwarming to meet so many CHARGE families and hear their wonderful stories, and see how far they've come. We left the conference feeling like we had not lost Josh, but gained a whole new community of friends.
August 1 was our Inaugural Joshua Kurby Charge for CHARGE 5K, a 5K run/walk that we started in memory of Joshua, to raise funds for the CHARGE Syndrome Foundation, and to raise awareness in our community about CHARGE. The race was quite a success and we are excited to see the turnout this year!
In September Josh was remembered at Crystal's Bowling for CHARGErs fundraiser. She put together a beautiful picture montage to remember Joshua as well as another CHARGE chile that had passed, and to honor her beautiful daughter Eva. It was a fun day of bowling, raffles, food and drinks, and spending time with other CHARGE families. Another great event!
October we went back to CDH for their annual NICU party. Joey decorated a pumpkin for Josh, and we visited with many of the families that we met during Josh's 126 day NICU stay. We caught up with some of his therapists, nurses, and doctors, while still having time to eat, dance, and play in the bubbles!
Now we are anticipating the holiday magic, reliving many moments with Joshua, and awaiting the arrival of his little sister, Jillian Grace, due in December. We hope you have a blessed, healthy, and happy holiday season. We thank you for all that you share with us. Merry Christmas, and Happy New Year!
The Kurby Family:
Phil, Sandy, Joshua (8 1/2 month CHaRGE angel), Joey (17 month surviving twin), and expecting Jillian Grace--now here!