On October 23, 2010, our precious angel Grace passed away from a rare seizure disorder called Early Myoclonic Epileptic Encephalopathy (EMEE). We hope to share her story and the challenges we face as a family through this blog. So please join us as we set out on Gracie’s Journey.
Today was a good day. I’m not sure why…maybe it was the cute kids I saw at work who were very excited to tell me about Christmas, and what they were hoping to receive from Santa. Lately, I haven’t had much hope for the future. Seeing their eyes light up definitely helped to lift my mood. I started thinking more about the concept of “hope” and realized that we have many friends whose stories embody this concept. Although there are less than 12 days left until Christmas, I would like to share with you 12 stories of this year that have inspired me to have hope. Some you may know and others you may not. In any case, I feel honored to have so many great friends and family. During my darkest days, know that your stories have helped give me hope. Thus, I “hope” you don’t mind that I share your story or accomplishment with others! In an effort to not make the blog too long for anyone to read tonight, here are the first six stories:
Alli and Dan- These friends went through years of navigating the system that would lead them to their dream of adopting a child. After many ups and downs, heartaches and heartbreaks, their persistence finally paid off this year. Much to their surprise they were blessed to be able to adopt two wonderful twin girls. From them I’ve learned that in those moments where it seems all hope is lost and you just want to give up…you may just end up with even more than you could ever wish!
Nicole- We were so excited when Gracie’s famous pink letters arrived to display above her crib, and these were made by a gal who ended up being touched by Gracie’s story. Nicole kept in touch and when her daughter was later diagnosed with JRA (Juvenile Rheumatoid Arthritis) she started a blog for her and, more importantly threw herself into fundraising to search for a cause of this disease and to help others understand the condition. Her daughter, Bevin is now the poster child for the 2012 JRA fundraising walk in Sacramento! You can read more of Bevin’s story at: http://bevinsadventureswithjra.blogspot.com/
Debbie-My dear friend and neighbor found a lump in her breast earlier this year and was diagnosed with breast cancer shortly thereafter. In addition to continuing to be the most awesome mom to her twin toddlers, Debbie’s spunky and vivacious attitude towards getting through treatments as well as life’s ups and downs has inspired me. When her first doctor presented the worst doom and gloom scenario, she promptly went out and found a new doctor. When her hair fell out, she found the cutest wigs and looked at is a great opportunity to try out many different hairstyles! I’m happy to say that her hair will be growing back soon as she just finished her last round of chemo treatments this week. She is truly beautiful, inside and out.
Dad- That’s right…my dad is awesome! At 65 years of age, he packed up his entire life of the past 25 years and moved to Sacramento from Las Vegas on his own. Not only did he move his life, he also decided to get healthy! Thanks to help from the Hernried Medical Center, my father has lost over 120 pounds since February of this year. His health has increased dramatically and he is now a swinging single senior! From him, I’ve learned that anything is possible at any age, if you just put your mind to it and don’t accept failure.
Renee and Carl- On Labor day, we got a call from our dear friends telling us that their house had caught on fire while they were out of town. Thanks to the fast actions of their caring neighbors, their home was not totally destroyed. After months and months of battling with the insurance companies they finally got approved to start rebuilding their home last month. In the meantime, they are now living in small apartment and making the best of a bad situation. From them I have learned that life can change in an instant and how you deal with that makes all the difference in the world. Renee and Carl are looking forward to this remodeling opportunity and to hopefully hosting this year’s Super Bowl party in their new home!
Melanie- this amazing young woman I met on Facebook. She lives in NY and has a daughter, Layla, who is an infant. Layla was born with NKH (Nonketotic Hyperglycinemia) disease. This is a metabolic disorder, which is very severe and also causes Layla to have seizures. What struck me first about Layla was how similar some of her symptoms were to Grace. Although Grace didn’t have NKH, Layla reminds me of how sweet and innocent these babies really are. I know that Melanie does everything she possibly can to ensure that Layla receives the highest quality of care. She believes in Layla and when the doctors told her that Layla wouldn’t live past one month of age, she ignored them and kept Layla on life support. Her daughter kept fighting hard to live and eventually was able to come home with her family. Layla receives lots of early intervention and they are still struggling to get her seizures under control but they are extremely grateful to have her home and healthy. Melanie has inspired me with her story of hope and courage for Layla. Every time she posts a new picture of Layla in one of her ultra cute sleepers, I see her and think of Grace….and I like thinking of Grace.
So, there you have it, six stories of lives and life’s little events that have touched me this year. When I think of these stories, they give me hope and, well...that just makes me feel better. I hope that one of these stories may resonate with you during this wonderful holiday season. Tune in later for six more stories to round out our twelve days of Christmas…..