A New Lead and New Hope for 2012

As 2011 comes to an end, we have new hope for 2012. A few weeks ago Holly and I were talking about our future family plans. With so much uncertainty we have yet to make any definitive decisions as far as having another child. I asked Holly to take the research reins and continue where I left off. I felt as though I had reached my breaking point and couldn't mustard up the energy to continue the research. The mental and emotional fatigue the research has taken on me was too much to continue. Plus I thought a new set of eyes and renewed energy could help propel us into a new direction. I don't think people realize how overwhelming and difficult it is to research diseases that are so rare. And sadly, it's really up to Holly and I to continue the fight.

Holly went back and revisited emails, lab results and medical records. She started to identify a rare cause to EMEE that we were unable to pursue. It's called Sulfite Oxidase Deficiency. I can't even thoroughly explain what it is as we barely understand it ourselves. But essentially it is a metabolic disorder that has very similar symptoms to what Grace had. There were some abnormalities to Grace's urine tests early on that in hindsight could be bringing us closer to this diagnosis. It is a condition brought on by a gene mutation in which Holly and I could both be carriers. Unfortunately, we were in the process of getting enough urine from Grace for the test when she passed away. So we were never able to test for it.

Holly has been in touch with Grace's geneticist, Dr. Lipson, who is seeing if we can test for it via DNA, but best of all, using only our DNA. Meaning Grace's DNA samples that we recently stored would not be needed. We've really been wanting to find more testing that Holly and I could do and not use Grace's precious samples and this could be it. Dr. Lipson has been in contact with Duke University, where they test for Sulfite Oxidase Deficiency to see if testing can be done with our DNA samples. If so, this could lead to a definitive cause of Grace's disorder and subsequent death. It would also tell us the likelihood of having another child with the same disorder.

I am incredibly grateful for Holly taking over where I left off. When I felt I had reached my breaking point it's nice to know my partner is there to take over. The next few weeks could be very telling for us and give us the answers we need.

Christmas Angels

Tonight Holly and I went out to dinner, our Christmas Eve tradition. During dinner we reflected on this last year…and what a year it’s been. Aside from the loss of Grace we have endured so many challenges this year. I don’t know where we’ve found the strength to survive everything.

At this time last year Grace had been gone for 2-months. We were kind of just going through the motions of Christmas with very little to look forward to. Life just seemed so pointless at the time. I guess it’s like this for everyone who has suffered the loss of a child. You find yourself asking why. Why you, why your child, why why why…

I remember a few days after Grace passed away talking to my dad and step-mom, both are in their mid 60’s, and neither had ever known anyone who had lost a child. Yet this year it seems like that’s all I’ve met, other parents who have lost a child. Some through our bereavement support group but others in unlikely places. It’s like I have a scarlet letter on my forehead. I have spent time getting to know all of these people and we all share so many similarities. No matter how old their child was when they died, we all feel the same empty void in our hearts. It’s almost a physical pain that doesn’t go away.

There seems to be two different ways people go on. There are those who let the pain consume them and eat at them with no end in sight. They can never come to terms with their loss. And then there are those who look to fill the empty void with some sense of fulfillment. For many it’s helping others in the name of their lost loved one. Clearly this is the road Holly and I have taken. We strive to help others in hopes of finding some satisfaction to help fill that void. In all honestly, I don’t feel any better. But I know I’m helping someone else who is in need, so for that I’m grateful.

The one thing we all have in common is in keeping the memory of our lost children alive. So on this Christmas Eve, I want all the Christmas Angels to know how much their families still love them and miss them. You may not be with us on Christmas morning, but you’re in our hearts always.

12 Days of Christmas Continued….

Tomorrow is Christmas Eve, and I hope that this year has been good to you and your family. As promised, here are my other six stories of hope and inspiration of the past year. I feel honored to know all of these people, and they are just a few of many, many others who have helped me end this year with some hope.

Jen- My old grad school buddy, who is a super speech pathologist, mom, and now romance novel author! Jen said that one day she woke up and just said she wanted to write a book. Now, her book, The Marker, was just released at Amazon.com. Set in the late 1800’s in Sacramento, this novel is a perfect blend of romance meets history. Check it out at: http://www.amazon.com/The-Marker-ebook/dp/B006MMYSR6/ref=sr_1_1?s=books&ie=UTF8&qid=1324701071&sr=1-1

Although I had not seen Jen almost ten years, when Gracie passed away, she rushed to our side and attended Gracie’s memorial. From her I have learned that old friends are the best friends, and also that following your dream is easy if you just say what you want to do… and then do it!

Sadie- One day we received email from Sadie, and this email eerily arrived only a few days after Grace’s Angel Day last Oct, a time when things were very difficult. Sadie lived in Massachusetts and had somehow found Gracie’s blog on the web. She was astounded by the similarities of Grace’s story and the story of her own daughter, Eva. Baby Eva was born in August 2010, and diagnosed with EME a few weeks later. Despite all the medical intervention possible, Eva passed away in October 2010. We were just astonished to find that Sadie and her husband were, in essence, going through exactly what Brien and I had gone through at almost the exact same times. Given the rarity of Grace and Eva’s disorder, I have no idea what the odds are that Sadie and I found each other but I thank my lucky stars that we did. From Sadie, I have learned that as mothers, we did everything possible for our angels and will continue to do so for now and forever. I only wished that we didn’t live so far away!

Becky and Steve- I know we’ve written about Becky and Steve before, as well as Keri and Nathan, but their stories have also given me hope and comfort knowing that there are others out there who “know what it’s like.” Becky and Steve lost precious baby Elle to Epidermolysis Bullosa, a rare genetic skin disorder, at the tender age of eleven months. They continue to honor her memory in her blog and also by helping other families with children with this condition. You can read more about her at: http://sweetbabyelle.blogspot.com/

Keri and Nathan- Like Becky and Steve, we met Keri and Nathan last year through a UCD support group for hospice patients. These parents lost their sweet baby Lily last December to a rare form of Leukemia. Keri told me about the bricks at Fairy Tale Town and how they bought one for Lily because it was such a magical place that Lily and her older brother, Jonathan enjoyed so much. When we decided to buy Gracie a brick, Keri made sure to request that all three girls (Lily, Grace, Elle) be put next to each other. She even went down there when they were laying the bricks and brought drinks for the masons to thank them for their hard work and making sure our girls were together. Keri and Nathan also arranged for us all to meet and picnic there once the bricks were put in and gave us each part of the cement made into cute shapes. Keri and Nathan, and Becky and Steve are some of the most thoughtful people I have ever met and they are also making sure that their girls’ memories live on in all that they do.

Joe and Danielle- These two friends had the opportunity to move from Sacramento to Hawaii many years ago and fulfill their dreams of island living. Since then, they also gave birth to a wonderful daughter, Jilee, who is now two years old. Several months ago, she became very ill and was then finally diagnosed with Leukemia. Luckily it’s the kind of Leukemia that is very treatable, however in order to receive treatment, they had to move her to a hospital that is on another island from where they live. Thus, they have now made the Ronald McDonald house their home away from home and have put their lives on hold in order to help their baby heal and be there for her around the clock. Thanks to the help of their amazing friends and family, fundraising has allowed them to focus on Jilee’s heath and all of their efforts have been spent keeping Jilee happy and healthy, no matter what. From them I have learned that it doesn’t matter where you are or what your circumstances, as long as you are together, you are family, and you are loved. I truly believe that love will heal Jilee, and she has plenty of it!

You- I can’t tell you how much that YOU have helped me just by reading our blogs. Knowing that so many people care about us and about keeping Gracie’s memory alive gives me all the hope and inspiration that I need. I can only hope that you will continue to read. Happy Holidays to everyone and I hope you have the merriest of Christmases!

12 Days of Christmas

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…..

Deck the Halls

This morning I woke from a vivid dream about Grace. She was alive, and she was smiling, laughing, and happy. We were all in the hospital still but we all had hope for her. The doctors had hope, they were giving us good news, and there were no signs of doom and gloom. This morning I woke up and realized that hope was gone. I’m trying to get it back, but for now I’ll focus on getting things done today and not worry so much about the future.

While most people delight in decking the halls of their home for the holidays, Brien and I enjoyed decorating Grace’s monument for Christmas. Brien got her a small live tree and I found an ornament with her name on it. Luckily, Brien has also picked up a new hobby of arranging flowers for her. He went to Michaels and put together a pretty display to go next to her tree. I have been obsessed over the last couple of days with finding her a Santa figurine. Brien and I both agreed she had been good enough this year to warrant his visit! Yesterday I found an ornament of a small blonde girl sitting on Santa’s lap. Today I also found, while at the grocery store of all places, a very cute small LED Santa with a star above his head. This may all seem very odd to some people, but for us, it’s the least we can do to make sure she is included with our activities. Grace never got a chance to see Christmas here on Earth so I hope that somehow she is able to enjoy looking at her cheerful display from high above the clouds.

The Makings of a Butterfly Garden

I'm happy to report we finally put in Grace's butterfly garden. Although as you can see by the picture its still pretty barren. We won't put in the majority of the plants until the spring. But at least we can now start planning our garden.

We have a pretty good idea on the types of plants we want and where they'll go. It will be a matter of finding them as some are more readily available then others. Butterflies are also attracted to a variety of herbs. So we'll be incorporating a lot of herbs into the garden.

Our landscaper and his crew did a wonderful job on it. He donated all the brick which saved us a lot of money. They also ran electrical and drip irrigation into the garden. I put in the fountain yesterday (not pictured) which already makes it look better.

I put up chicken wire to keep Bodie out until the spring. Hopefully once we get the plants and decorations in he'll stay out of there. If not, we might have to add a little white picket fence around the perimeter.