Friday, December 30, 2011

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.

Saturday, December 24, 2011

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.

Friday, December 23, 2011

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!

Tuesday, December 20, 2011

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…..

Sunday, December 18, 2011

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.

Monday, December 5, 2011

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.

Wednesday, November 30, 2011

Inspiration in Unlikely Places

A couple weeks ago Holly and I attended the ASHA (American Speech-Language-Hearing Association) convention in San Diego. This annual conference is the largest speech and language convention in the country.

While Holly was attending conference sessions I walked the exhibit floor. I had certain goals in mind, but found myself striking out by the end of the day. The massive convention floor took me an entire day to work through. By the end of the day my feet were killing me and I just wanted to call it a day.

Special Forces Medic, Staff Sgt. Marc Small
As I walked down the last isle a picture caught my attention. It wasn't the typical picture you'd expect to see in front of someone's booth; it was a picture of a soldier. Behind the picture was a woman with an inviting smile. So I moseyed over to her and asked what they do. She introduced herself as Mary and explained that her organization, Small Steps in Speech, is a non-profit foundation to help fund speech and language services for children who may not have the funds to pay for services themselves. I was astounded to hear this because I had never heard of an organization that helps fund speech therapy.

Mary went on to say that the foundation was created in the name of this soldier, Marc Small. She told me that Marc was engaged to the founder, Amanda Charney, and they had plans to open a speech and language private practice upon his return from Operation Enduring Freedom. Sadly, Marc was killed in 2009 after his third week of deployment in Afghanistan.

I was very taken by Mary's story. I told her I thought it was a wonderful foundation and I could see us working with them in the future. I also, loosely mentioned my wife and I had thought about establishing a similar foundation one day too. This perked her interest and she asked me more about what we were thinking. I wouldn't normally talk to a stranger about Grace in the middle of a convention hall but I did. I told her that we lost our daughter about a year ago and that we had thought about establishing a foundation in her name one day too. Her eyes immediately swelled with tears and she said that Marc was her son. I could feel the lump in my throat grow and tears fill in my eyes. We both share the common bond of losing a child and no matter how old they were when they died the pain is still the same.

We exchanged contact information and have been in touch a couple times since the convention. I remember texting Holly after leaving that day "I met a very special woman today. I can't wait to tell you about her." Holly's reply, "Great..."

Later that night I told Holly about my meeting with Mary. She too was very touched and made plans to go by her booth the next day. I wasn't there, but from what I heard they had a great meeting as well.

We hope we'll be able to work with them in the future. We're not sure to what extend or in what capacity. All we do know, is like Mary and Amanda, we want to turn our heart-ache into good and try to help others in Grace's name.

Friday, November 18, 2011

Zoo's are for Children ...and the Elderly

A few days ago Holly and I went to the San Diego Zoo. It was one of many attractions we planned to visit on our trip to San Diego.

I had a feeling it could stir emotions seeing so many kids. It's hard not to see kids a year or two old and not think about Grace. I tend to not dwell on my heartbreak but rather embrace the happiness of so many young families and kids having fun. Hearing children laugh and run around is so natural and inspirational. But even so, we can't help but imagine how much we would have enjoyed showing Grace all the animals and having that same fun. I guess we'll probably experience similar situations for the rest of our lives.

As we wandered about we found ourselves going into different gift shops looking for souvenirs. Not so much for ourselves, but for Grace's gravesite. We can't share any other life experiences with her. So all we can do is hope to find a meaningful trinket to leave at her gravesite to share our trip with her. I know that may sound irrational, but that's all we have.

Before leaving the park we visited the largest gift shop. After mulling around for a few minutes I went to sit down on a bench while Holly continued to shop. After about 10-minutes I saw Holly walk briskly past me leaving the store like I wasn't there. I immediately went outside to her and could see tears running down her face. I think the emotions of the day and our desire to find the perfect souvenir for Grace was just too much.

We both realize our actions are irrational but we're torn between our hearts and wanting to give something to her. I don't know what's going to happen. Maybe one day we'll come to terms with our loss and not do these types of things. But for now it's all we have and that false sense of sharing a token from our travels will bring a little happiness to us.

Tuesday, November 1, 2011

DNA in the Bank

Several months ago I mentioned we were looking to bank Grace's remaining DNA. We were a little skeptical of what we'd be able to bank since most of the tests had used everything available...or so we thought.

I wanted to wait until we were moved into our new house before starting the process. With the help of Grace's geneticist we were able to locate every sample that Kaiser had sent out. Once I had the list of labs it was a matter of calling them to find how much was remaining. It took me about two weeks to call them all and have them report back to what they had. Most of the labs had no more then a few micrograms of DNA or the residue in the test tube. But two labs had a significant quantity, 75 microliters and 300 microliters. I'm unable to give a comparison of what a microliter is other then to say it was definitely enough to bank.

So last week both samples were sent to Oregon Health and Sciences University for long term DNA storage. The remaining samples will stay at their respective labs for the foreseeable future. What I've learned throughout this process is most labs will save the DNA for an "unspecified" amount of time. Whereas a DNA bank guarantees safe storage for decades.

The reason we wanted to store Grace's DNA is for any future tests or research studies in which her samples could be of use. Maybe one day it could offer answers to us and others through additional testing and/or research. For Holly and I, the piece of mind knowing everything is safely stored is well worth it.

Sunday, October 23, 2011

Grace's Angel Day

It was one year ago today that we lost our baby girl. Unlike today, it was a cold and rainy day. As we held her tightly we watched the rain streak down her nursery window like tears. It was undoubtedly the worst day of our lives.

There hasn't been a moment that's gone by we don't miss her. She meant the world to us and her loss has hurt us deeply. I wish I could say it's gotten easier but it hasn't. Losing a child is simply too great a pain to get over. So we learn to live with our pain and go about our lives surrounding ourselves with memories of her.

We're grateful to have so much support from our friends and family who have helped make this last year a little more tolerable. Their willingness to share in our memories of Gracie has been a godsend.

Today, we're going to visit her gravesite like we do every weekend. We will be releasing balloons with hand written notes to her attached. Perhaps the winds of God will carry our messages to her. We want her to know how much we still love her and miss her.


Saturday, October 22, 2011

Money for Nothing

Here's a picture of Grace with her first purse, given to her by Sarah.

Several months after Grace passed away, we received a bill from the fire department for emergency services. Imagine how shocked we were, it was like saying “here’s your bill for you daughter that we couldn’t save.” I know someone has to pay for it, but the thought that it would be us was just devastating. I sent the bill to Kaiser and they, in turn, then directly billed us for it as well. Luckily, I called and got a hold of a nice lady named Lori in the claims department who was able to get the charges written off for us. We felt a little better knowing that someone listened to our concerns and appeared to generally care about making things right.
A few months ago we finally paid off all of the Kaiser bills that were related to Grace’s care and that was a relief. Finally, no more reminders would be coming in the mail. Then, a week before her angel date, we received another Kaiser bill. This bill was sent under my name (because Grace had passed they couldn’t bill under her name) and it was $250 for an office visit we had with her geneticist long after she had passed away.
In March, we met with her geneticist to go over all of the tests that had been performed with what blood samples we had from her before she passed. He handed us a list of tests and then basically told us that no cause was identified so we had to assume a one in four chance of having another child with EMEE. We learned nothing new. Imagine my shock getting the bill for $250 for basically…nothing. All it did was remind me that we still have no answers and no reasons for this reoccurring nightmare. The fact that it came right before her angel date was even more gut wrenching.
I was going to just pay the bill, as it seemed easier that way. Brien told me no, that I needed to get on the phone and dispute it, find out why they were charging us so much for a simple follow-up office visit where no new results were learned. We had to continue to advocate for her, and for us, long after her death.
So, this week I did so, and once again, tried to go through the story with the Kaiser representative without anger in my voice and trying not to completely break down. The person on the phone told me they would escalate the claim and we would receive an answer in two weeks, just like last time. I hung up the phone hopeful that maybe they would reverse the charges. Within a few hours I received a phone call from that nice lady Lori, who I spoke with months ago about the ambulance bill. Again, I had to explain the whole story, and luckily, she indeed remembered me from before. She genuinely apologized to me and told me she was going to expedite the claim to help out as much as she could. I can only hope that was her own angel deed for the day. I don’t know Lori but I am sure thankful that she handled the situation with compassion and grace.

Saturday, October 15, 2011

Light a Candle Tonight


Today, Holly and I placed pink and blue ribbons on all the grave sites in the Garden of Angels. We wanted to show our support and to let others know that October 15th is Pregnancy and Infant Loss Awareness Day. It's something we recently learned about and felt compelled to help spread the word.

Pregnancy and Infant Loss Awareness Day is part of a month long Proclamation signed by Ronald Reagan in 1988. It's goal is to Support, Education and create Awareness for grieving parents worldwide. Too many families grieve in silence, sometimes never coming to terms with their loss. Our goal is to help others relate to our loss, know what to say, do or not say, not do and to help families live with their loss, not "get over" their loss.

So tonight at 7:00 pm, we invite you to light a candle for one hour in memory of Grace and all the other babies who left us far too soon in life. Thank you.

Thursday, October 13, 2011

The Hardest 10-Days of our Lives

It was a year ago today when I found Grace unresponsive and I had to administer CPR for the first time to save her life. Over the next 10-days I would resuscitate her several more times to prolong her life.

I will never forget that terrifying day Our first call to 911 when I found her not breathing. It has forever changed me and is the root of so much anxiety when I think about the last 2-weeks of her life. Not to mention those early mornings when I was awoken by Holly screaming "she's not breathing, she's not breathing!" I would fly out of bed like it was on fire and run into the nursery to start resuscitating her. Such horrible and painful memories. Events that no parent should ever have to face.

I know the next 10-days are going to be very difficult for us. There are so many memories both good and bad. One of the best memories we have took place two days before she passed away.

Our last bath together
Holly's sorority sister and dear friend Stephanie had come into town to meet Grace for the first time. Holly was so excited to see her that night and introduce Grace to Stephanie. Before Stephanie arrived Holly and I bathed Grace. We loved doing bath time together. Grace was so happy during her bath, it was one of the few times when there were no seizures and you could see the happiness and peace on her face. I think the warm water and gentle touches from us made her so comfortable.

When Stephanie arrived Grace was just glowing. You could see it in her eyes and the smile on her face. Perhaps it was Stephanie's trademark big earrings or neckless that garnered Grace's interest, either way she was clearly enjoying being held by a new friend. Holly told me last week she thought that was the last happy time for Grace.

Sadly, what started out as a happy evening ended with a living room full of paramedics attending to Grace. A few minutes after we all sat down to dinner Holly saw that Grace had stopped breathing again. I was having a hard time resuscitating her so Holly called 911. Grace never fully recovered after that night. For the next two days it was about care and comfort for her. There was very little we could do for her at that point. This was the beginning of the end and the worst time of our lives. To this day it is a vivid nightmare I can't shake.

Holly and I never left Grace's side for the next two days. Our friends and neighbors fed us and took care of us during this time so we could be by Grace's bedside. We slept on the floor in her room and talked to her endlessly. We must have told her how sorry we were and how much we loved her a million times. I fondly remember kissing her head and feeling her soft silky hair on my nose and smelling her innocence.

Last week Holly wrote a blog entry about Grace's Angle Day. And quite honestly, that's the only thing keeping me together right now. If it wasn't for that different approach to dealing with her death I don't think I could do it. The anxiety would be eating me up. But somehow thinking of the day she died as the birth of an angel is making it tolerable. I know the next 10-days are going to be tough for Holly and I. But we have each other and we'll make it through this difficult time together.

Sunday, October 9, 2011

Angel Month


Shortly after Grace passed away, a friend put me in touch with another local mother who had lost an infant daughter. One of the things she told me was that each year, on the day that their baby passed, they light a candle in honor of her and call that day her “angel day.” That term has stuck in my mind, and I think it’s very sweet. Rather than calling it a “death anniversary” or “anniversary of passing”, the term “angel day,” is much more uplifting. All babies are precious little angels sent to us from heaven. I don’t know why some have to return to heaven early, it just doesn’t seem right.

Brien and I have been discussing what to do when Grace’s angel day arrives on Oct. 23rd. We had planned to start her butterfly garden, however it now seems that spring would be a more practical time for that. We also thought about having a gathering of friends, however we are very hesitant to plan that, as we just don’t know exactly how we will feel on that day. What we know for sure is that Brien and I will definitely spend the day together, visit Grace, and include a special gift for her. She will forever be our angel.

Today I was shopping at Kohl’s and wandered into their Christmas section to look for angels. We wanted to find a special one for her day. As I was looking around at all the ornaments and figurines, I found these blocks with angels on them that spelled the word Grace. Next to the blocks was also a beautiful snow globe with an angel and her name on it as well. Of course, I had to buy them even though Christmas is still some time away. The discovery of the angels got me thinking….maybe I should think about angels all year round and how they are always among us. Grace gave me an idea.

I’ve decided that October will be Grace’s angel month. I think she deserves more than one day of commemoration. The enormous life lessons she has taught me I will hope to carry with me always. For the remainder of the month, and the days leading up to her angel day, I will try and complete one angel deed per day. It may be something simple like taking out the trash (which is usually Brien’s job) or calling up an old friend, or it may be something requiring more thought and preparation. Today, I thought of a friend and bought her a small gift. Who knows what tomorrow’s angel deed will be? I hope that others will join me in some small angel deeds during October, and think fondly of our angel lessons.

Tuesday, September 20, 2011

The Bonds of Friendship

They say you don't pick your friends, but rather your friends pick you. I'd like to think that's the case, but there are also the friendships that come about from a shared tragedy such as the loss of a child. We met the Morris' and Pops' back in January at our bereavement support group. Even though there were other wonderful people in our support group, we shared the special bond of losing an infant daughter.

Many times the facilitator would have the group break into smaller groups and we'd always be together. I think this was done because of the common bond we all shared. Not to take away from the loss of the other families, but we all lost our daughters under similar circumstances. Keri and Nathan lost their daughter Lily to leukemia. Becky and Steve lost their daughter, Elle, to Epidermolysis Bullosa, a rare skin disease.

After our support group ended we'd periodically email each other or meet-up. All of us have visited each other's grave-sites. In fact one evening while we were visiting Grace the Pops' pulled up to visit her too. It was very touching to share that time with them.

A few months ago Keri mentioned that Fairytale Town had bricks for sale along the yellow-brick road leading into the entrance. The bricks could be inscribed with anything you'd like. We all decided to get a brick in our daughter's memory. Shortly after we had placed our order Keri called them to see if the bricks could be laid next to each other. When they heard our story they agreed to do so. In fact the Morris' were there the day the bricks were laid down and the masons made it clear they knew the story and took great pride in placing all three together.

On Sunday, we all agreed to meet there to see the bricks. We brought some blankets and sat on the grass nearby. Keri brought us the lyrics to Over the Rainbow and little sculptures made out of the extra mortar from when the bricks were laid. She also lit a few candles to show our solidarity of this special time.

The Morris' also have a son, Jonathan, who is about 3 and the Pops' have a daughter, Chloe, who is about a month older then Jonathan. As we watched them play together we talked about a variety of things. About how the kids have been having a hard time adjusting to the loss of their baby sister and their fear of losing a parent. We talked about how we deal with family and friends who avoid talking about our daughters. And we spoke about the little things in life we all deal with. Contrary to what you may think, it's not all doom and gloom when we meet. We simply share stories about our lives in hopes of helping eachother learn through them.

Holly and I are very fortunate to have such wonderful family and friends who aren't afraid to talk about Grace. Sadly, lots of people are afraid of bringing up the topic for fear of hurting the parents. But like I've said before, talking about our lost child doesn't hurt us. It's ignoring them that bothers us. We don't want you to forget either. You might not have to live with the constant pain of our loss, but you can share in our memory of them.

I'm forever grateful we have met Keri, Nathan, Becky and Steve. I feel so fortunate to have met such down-to-earth people who share so much with us. I'm honored to have gotten to know Elle and Lily through their wonderful parents. I only wish we could have met them in person. There is no doubt if given the opportunity, our little girls would have been friends. Instead, they will forever be our little Angel BFFs.

Thursday, September 15, 2011

Living on Halo

Two weeks ago Holly and I moved into our new house. This is the same house in which our offer was accepted on Grace's 1st Birthday. Aptly enough the house is located on Halo Avenue. Definitely a sign from our little angel.

The move was very stressful for us. We had about 80% of our belongings in storage while we were temporarily living at a friends' house. So when it came time to move we had to coordinate moving from our temporary house and the majority of our other belongings in storage. On top of that we needed to get some painting and repairs done prior to moving in.

We've been in the house for two weeks now and we're finally getting settled in. Normally we would have already been unpacked but that has been delayed by flooring problems. We bought new floors and they were to be installed before we moved in but they were late in arriving so we had to move in knowing we'd have to move everything out a few days later. Then when the floors did get installed we learned they were defective. We're now waiting for replacement floors to arrive so we can get them installed and finish moving in. The majority of our living room and dining room is in the garage. Meanwhile all our garage items are in the backyard. So we're looking forward to finishing up.

The one thing that has been making the house feel like a home is Grace's pictures. We've been gradually hanging up pictures of her and unpacking personal mementos. It's also been nice to have her Hope chest in our bedroom which gives us a sense she's close by. The butterfly plants we'd purchased for her butterfly garden have already been attracting butterflies. We're hoping to start working on her garden in about a month. Gradually the house is becoming a home for Holly and I where we hope to create new memories but never forgetting our past. This house will be just as much Grace's as it ours.

Tuesday, August 23, 2011

D-Day

August 23, 2010

It was one year ago today Grace was diagnosed with EMEE. At the time it was the worst day of our lives. We were in complete shock at what we were being told. How could this beautiful little baby girl be so sick? We just didn’t believe it. Which is why I made the Neurologist go over her EEG with me line by line. I had to try to understand what I didn’t.

We knew something was wrong with Grace, but we thought maybe she was a little malnourished and excessively sleepy. But we weren’t prepared to be told our daughter only had a 50% chance to live a year. That was devastating. It made us numb to the world around us. We would have done anything to make her better. Every time a doctor would come into her hospital room we’d ask him questions on this that and the other. After he’d leave, we’d start complying a new list of questions. It took a week before we finally ran out of questions. There were no answers.

Grace needed us now more then ever. We had to be her advocate and caretaker. And we cherished every minute of it. We made the best out of the time we had with her and never took a minute for granted.

And that's Grace's legacy… to never take life for granted. To love and cherish your loved ones and live everyday like it’s your last. So on a day that changed our lives forever I hope you will find Grace in your life.

Saturday, July 30, 2011

Dust and Tears


Last weekend, Brien and I packed up and moved out of our house of five years. Doesn’t seem like too long of a time, however these past five years have been full of life changing events for the both of us. During these years, we got married, started a business, had our amazing little Grace, lost our Grace, and also both survived cancer (skin cancer for Brien and thyroid for me). These past five years have felt like a lifetime to us both. So many memories we have were entrenched in that house…especially with Grace.

Over the past several months we really have tried to look past our emotional attachment to the house, and to Grace’s room. Keeping the house just didn’t make much sense any more and we knew in our hearts that Grace would always be with us no matter where we were. I have hope that things are working out for the best, however as I was sweeping the floors of the empty house last weekend I found myself breaking down in tears. I felt like I was sweeping up some of the past and the emptiness of the house was just eerie. It was no longer a home, but a blank canvas for someone else to come along do what they may, to make their own memories.

As I was sweeping, Brien came in and went into Grace’s empty room. I heard him talking with her and asking her to come with us. I sure hope she was listening. We then packed up the rest of our odds and ends and loaded Bodie into the truck with us. As we were pulling out I started to tightly hug Bodie in my lap and then saw my neighbor walk up and tap on the window. She wanted to give us a good bye hug. This was especially difficult for both Brien and I because we had the best neighbors who have become our close friends, especially over the past year. Home is truly where the heart is and it’s the people you surround yourself with that make your home the best.

So now, a week later, I’ve tried to sweep up the dust and the tears while we settle into a new temporary house. We’re doing the best we can to make it into our home, as long as Bodie is here and Grace is here in our memories, things will be okay. We still have hope that our house on Halo Ave. will come to fruition, but if it doesn’t, that’s okay too. As long as we are together, we are home. Grace hopes the same is true for you.

Sunday, July 17, 2011

New Angel BFF

As you know last week would have been Grace's 1st Birthday. I know this may sound abnormal, but Holly and I started talking about what we wanted to do on this date months ago. We had already decided we were going to take the day off work. Initially we wanted to spend the day doing volunteer work. We really wanted to work with families that are dealing with a sick or deceased child. I contacted several organizations and even spoke with Kaiser about doing something. Unfortunately, our options were very limited on her actual birthday. So about a month before her birthday Holly had an idea. 

She suggested we ask our therapists to nominate any families that they thought would benefit from a toy (a.k.a. materials for my speechie friends) to help facilitate the child's communication. The program was to be called Gracie's Gift. After reviewing the nominations we selected five families as recipients for Gracie's Gift. What makes this unique is we're able to have our therapists work with the families on how to use the toy with their child and not just hand it to them as a gift. For us it's all about fostering communication. We were able to communicate with Gracie via music. And we feel any child should be given the tools needed to be a better communicator too.

One of the things we decided to do on Grace's birthday was start going through her room and packing things up for our move and putting memorable items into her Hope chest. It needed to be done and her birthday seemed like an appropriate day to do it. I think we were a little hesitant at first knowing our emotions would be running high. But I think it was rather therapeutic and gave me a certain sense of closure... or at least order. The feeling of accomplishment by being able to narrow all of her items down to those that fit in her Hope chest was nice. We boxed up the rest of her belongings and plan on keeping them as well. However, some of the items didn't really qualify as storage worthy. There were tons of diapers, baby wipes and misc. baby items we didn't need to keep. We weren't exactly sure what we were going to do with them, we just knew we didn't need to keep them.

Then yesterday while reading the paper I saw an ad for a diaper drive at the Rivercats game today. The diapers were going to the Sacramento Crisis Nursery, which offers emergency drop-off care for infants if the parents are too stressed to take care for them. So today on our way to see Grace we stopped off at the Crisis Nursery to drop off all our diapers and baby wipes. As you can image they were very grateful for our donation.

On our drive up to see Grace we knew things were going to be different. You see on Wednesday when we went to see her there was a gravesite dug out next to Grace's. At first I was shocked and incensed. I know it's irrational, but why did they have to squeeze in between Grace and the sidewalk when there are plenty of other spaces available. But later I thought maybe they choose that gravesite because of Grace. She is the greeter you know.


Meanwhile Holly knelt down next to the empty grave and started to cry. It's so sad to see another baby die and know what that family is going through. The service was to take place on Friday so this was our first time back since Wednesday. We were stunned by how many flowers and gifts were left at the gravesite. We couldn't make out the name, but it appears to be a baby girl. 

We said a prayer and asked all the other babies, including Grace, to welcome her and take care of her. She will be next to Grace for the rest of our lives. We will come to know her birthday and when she passed just like Grace's. It's so sad to see such little lives taken from us so soon. We hope her family will survive this difficult time and find solace in knowing their daughter is in the hands of angels. 

Wednesday, July 13, 2011

Baby Signs

Baby Signs is a sign language program developed to help infants communicate long before they are able to communicate verbally. This system is often very helpful for parents of children who are speech delayed. It gives a child who is not yet successful verbally another means to express himself and often helps the child become less frustrated, and, more importantly help strengthen the bond between parent and child that is developed through successful early interactions. Although Grace never had the opportunity to learn Baby Signs, I think that she has communicated with us this past week in her own ways, sending us her own “Baby Signs,” during this week, the anniversary of her birth.

As many of you know, Brien and I have been searching for another home for quite some time now. We have had many disappointments along the way, more than one house that we tried to purchase fell through for reasons that we had no control over. It has been a very long and frustrating process and each day that passes we have been growing more and more doubtful that we will find a house that will work for us. Last weekend, we looked at a couple more houses, and one of them was on a street named Halo Ave. The house was still occupied and one of the rooms was decorated in pink with a Tinkerbell boarder on the wall. I opened the closet to see how big it was and was immediately awestruck by a closet full of the prettiest pink infant dresses. Now you’d think that would have maybe upset me or made me sad, but, for some reason it didn’t. Instead, I had a very peaceful feeling in that room, and in every other room of that house. Today, on Grace’s birthday, we received a call from our agent who told us it looked hopeful that our offer was going to be accepted for the house on Halo Ave. Of course, we aren’t getting our hopes us because it is a short sale, so the bank has to approve the sale and hardship of the owner, etc. and we have been burned before by banks selling houses at auction that we were supposed to buy. But…I can’t help thinking maybe our angel Grace brought us to the house on Halo Ave. I wouldn’t mind having that address at all. Baby Sign number one.

Baby Signs numbers two and three came earlier this week at work. One of my clients brought her sister with her to therapy this week. Her sister and mom sat knitting in the waiting room while my client and I had our session. At the end of the session both sister and mom came back to the room. Her sister had a cute little blue baby bonnet that she was proud to show me she had completed. She asked if I knew anyone who could use the bonnet. Immediately, I remembered Gracie’s cute pink baby bonnet we received when she was born. I told her that Kaiser has some great volunteers who knit bonnets for babies and maybe she could donate her bonnet to a local hospital. She thought his was a good idea and replied “I have four more at home!” Then she asked if we wanted the bonnet for Bodie, our therapy dog. She brought much humor to a situation that she had no idea was probably tough for me to talk about. Gracie’s pink bonnet will surely go into her hope chest later today as we begin packing up her things.

Baby Sign number three I’ll leave right now as “to be continued,” as this will probably be a whole other post in itself. For now, I am comforted to know that she is still with us in many ways. We just have to continue to look for the signs and discover our own truth in the meanings.

Tuesday, July 12, 2011

A Day of Grace

Tomorrow would have been Grace's 1st Birthday. As you can imagine, this has been weighing heavily on Holly and I lately. We've been reflecting a lot about what she would look like now or what milestones she would have achieved. I know deep down inside that's not healthy, but you can't help but wonder.

I remember this day one year ago like it was yesterday. It started with an 11:00 am pre-natal appointment at Kaiser. We met with a new nurse practitioner that morning. She proceeded to examine Holly to see if she was dilated. Being two weeks before her due date I didn't think she would be so I was surprised when she said she was 1-2 cm dilated. I remember afterwards teasing Holly about the nurse's man-hands. She had the hands of mechanic not a nurse.

After the appointment we walked downstairs to the health center to buy our breast pump. We waited until the last minute since the 1-year warranty starts from the date of purchase. As we drove home Holly kept saying she was cramping up. We figured this was due to the invasive exam and it would stop after a while... but it didn't.

Later that afternoon I suggested Holly get into the pool. I thought the neutral buoyancy might help. As Holly floated in the pool I sat at the patio table reading the 10,001 baby names book. I hadn't cracked it open since we got it and figured now was a good time. We had already been leaning towards the name Grace but we hadn't decided on a middle name yet. As I read through the book I would toss out names to get Holly's opinion. When I got to Elizabeth we both really liked it and no other names after really mattered.

By 5:00 pm we were tracking the contractions that were coming more regularly. We called Kaiser and kept them abreast of the developments. Finally they gave us the go-ahead to come in. We were already prepared so it was easy to load up the car and head out.

When we got to the hospital they whisked us away into the exam room. The nurse checked Holly who was at around 5 cm at that time. The nurse smiled and said we're going to have a baby. So Holly was admitted and we were transferred to her delivery room. It was a very spacious room with all the modern instruments you'd expect to find.

Within a couple of hours Holly had the epidural and was no longer in pain. At that point it was a long waiting game with occasional checks on how dilated she was. By around 5:30 am Holly was dilated to 10 and it was game time.

After maybe a dozen or so good pushes Grace came into this world at 6:00 am. We were so overwhelmed at the time. My immediate concern was Grace's lack of crying. I knew this wasn't normal but I wasn't overly alarmed at the time. The nurses continued to fiddle with her trying to get her to cry. After about 30 minutes they started to bath her and then she started to cry a little. Obviously in hindsight this lack of crying was more serious then any of us knew.

All we did know was we loved this precious little baby so much. She was so pure and innocent. We were honored to be able to hold her and take care of her. It was such a joyous time that we wish would have lasted a lifetime. Unfortunately our journey took an unexpected turn in the weeks to come.

Wednesday, July 6, 2011

Our Rest Stop

As many of you now know, Holly and I have sold our house. It was a very difficult decision and comes with great sadness. We have so many fond memories of our house from all the remodeling we did to our wedding reception to the 4th of July parties with our neighbors, and of course all the memories with Grace.

The memories of bringing Grace home are so bright and happy. We were so proud of the nursery we created and were exciting to finally be able to use it. Those first few weeks when we thought everything was OK were great. But after her diagnosis our house became a hospital of sorts with regular visitors from hospice nurses and therapists to weekly deliveries of medical supplies. Then that dreadful rainy Saturday morning in October when she passed away while we all knelt around her crib and cried. The pain is still so deep and raw.

In the weeks and months that have passed we have maintained her room as it was on that day, sans the medical equipment and supplies. It has been a sanctuary to enter and connect with Grace. A place we could go pray and cry peacefully. To this day I always say good-morning to her as I open her blinds and good-night as I close them. I can't help but want to believe her spirit is still in her room and she can hear me and feel my presence. And for me that is probably going to be the hardest thing about moving. The thought her spirit could still be here and we're not.

I know Holly and I have come up with some ideas to bring Grace with us and keep her close to us. We have purchased a Hope chest to keep personal mementos in and we are going to put in a Butterfly Garden when we find another house. But we will never have her room again...

So over the next two weeks we're going to start packing up our house and moving things into storage. Unfortunately, we haven't been able to find another house yet to buy, so we're going to stay at a friends house in the meantime. I know going through her belonging and packing them up is going to be very emotional for us. Especially since next week would have been her 1st Birthday. We have already been feeling the effects of that pending date.

As much as it pains us to move I think in the long run it'll help with the healing. By not walking by her room everyday and having that constant reminder of our loss will help us heal. We will never forget Grace, but maybe living somewhere else will help ease the pain.

Friday, June 24, 2011

No mutation found

A couple months ago Holly wrote a blog entry about a genetics test we were trying to do. The test looks at the STXBP1 gene, which is associated with Ohtahara Syndrome. If a mutation were found it would have meant Grace had Ohtahara Syndrome. However, only about 5% of children with Ohtahara Syndrome have a mutation on the STXBP1 gene. So it doesn’t necessarily mean Grace didn’t have OS either.

As it is, her seizure type (Myoclonic) alone is not what is typically seen in infants with Ohtahara Syndrome. So the test results could have been a definitive answer and not a diagnosis based on signs and symptoms, which didn’t fit her completely.

Anyway, it took us a couple months to locate enough blood from previous labs to do the test. About three weeks ago we found a sufficient amount of blood at Baylor University to perform the test. We were expecting the test to take 4-6 weeks to complete. However, on Tuesday we were told the test results were in and no mutation was found. Which may sound like a desired result, but it’s actually not what we were hoping for.

By not finding a mutation on the STXBP1 gene means the root of Grace’s EMEE is still unknown. If a mutation were found on the STXBP1 gene the reoccurrence rate would have been virtually zero. This is probably most relevant in our decision to have another child or not. Without an identifiable cause it means there is still a 1:4 chance of having another child with the same disorder.

As you can imagine this really bummed Holly and I out. I likened it to being hit in the stomach and having the wind knocked out of you. It’s just so deflating to be hoping for answers to only find disappointment.

So at this point there is no additional tests to run. All we can do is try and preserve whatever blood is remaining for a future genetics sequencing tests. Our geneticist is contacting all the labs to find out what exactly is remaining.

Once we know what blood and DNA samples are remaining we will be sending them to the Oregon Health and Sciences University for long-term storage. Since the storage of such samples isn’t covered by insurance we’ll be paying for this out of pocket. But it will provide piece of mind knowing all of her remaining samples are stored together in a facility designed for long-term storage. So be it in a few years or a few decades, we will have samples saved for future tests that could give us the answers we’re looking for.

Saturday, June 11, 2011

Gracie's Angel Friends

Those mysterious pinwheels made a reappearance today when we went to visit two of Grace's angel friends, babies Lily and Elle. Two amazing little girls who were taken from this Earth far too soon, but they both made an astounding impact on countless numbers of people. I have been just awestruck looking at their pictures lately, the bright twinkle in their eyes and those sweetest smiles just warm my heart. They are pure and innocent, and possess the most happy and untainted spirits.

Brien and I had the pleasure of meeting these babies' wonderful and caring parents during our support group meetings last spring. We finally got a chance to visit both of their memorial sites today and were amazed at some similarities between their sites and Grace's. Baby Elle had a cute musical baby ball, it was one of the same toys that Grace had, only she never got opportunity to play with it. Baby Lily had a couple of pinwheels at her site which Brien and I immediately recognized from Grace's site. I wrote about these about a month ago, someone had left them at every baby's site in the cemetery where Grace was located. So maybe it was Lily's parents who left them...but we don't know for sure. Probably just coincidence, or maybe.....another sign. If not for Grace, we would have never met such wonderful people.

Perhaps, through these small coincidences, Grace was telling us that she is a dear friend to these sweet babies. In any case, we sure hope that babies Grace, Lily, and Elle are finding happiness together, "Forever Over the Rainbow!" God bless our little girls. May their spirits and kind hearts shine on through eternity.

Wednesday, June 8, 2011

Planning the Perfect Butterfly Garden

After a week of rain we finally had a break on Sunday to go visit Grace. Holly had picked up some fresh roses and I had my gardening bag in tow. Like many times we visit her, Holly will take the vase to a nearby table and start trimming the flowers and putting them in a vase. Meanwhile I use a little brush and water to clean all the nooks-and-crannies on her plaque. We take great pride in making sure her site is always clean and full of flowers.

When we were done we stood there admiring our work and thinking about our baby. I couldn't help but think about how beautiful the floral design is on her monument and all the flowers surrounding it. Then it dawned on me, we should start a garden in Grace's memory. But not just any garden, a butterfly garden. Holly loved the idea!

The notion of a living garden with butterflies that are so symbolic to us made perfect sense. Something we could create with a variety of flowers and whimsical garden fixtures seemed like a fitting tribute to our baby girl. Being part of something that would grow and evolve in her memory was just what we were looking for. It was also perfect timing since we had just been discussing where to put a Butterfly Bush our friends Jason and Alex had given us.

We had already planned to go to a nursery after our visit, so it was a good time to get started. We had been talking about getting a water feature for months. And we figured this would be a good start to our garden. After spending an hour at the nursery looking at different fountains and features we decided on this one. We really like the design and easy setup.

Since then I've been reading a lot about butterfly gardens and what it entails. There are dozens of local trees, shrubs, vines, perennials and annuals that attract butterflies. These types of plants are broken into two groups; nectar plants for butterflies to feed on and host plants for emerging caterpillars. And of course the types of butterflies varies by region.

So over the course of the next couple of months we're going to work on the plans for our garden. We don't want to put it in at our current house since we plan on moving soon. But as soon as we move we will probably start on it. In the meantime I will continue to work on my list of plants and design. We really hope this will be a labor of love and a place of happiness in memory of Grace.

Sunday, May 22, 2011

Speak up for Grace


Today was a day, much like any other Sunday for us. Taking care of house work, yard work, errands, and visiting Grace. Upon arrival at the cemetery today, Brien immediately noticed that someone thoughtfully put small pinwheels next to each of the sites of all the babies. They also put flowers next to each site which did not yet have a memorial stone built yet. How touched we were by such an act of kindness. Someone was advocating, telling us not to forget any of the precious babies and all of the lives they touched. That got me thinking about how important it is to advocate for yourself, and for others, for those who don't have a voice.

A dear friend was recently diagnosed with cancer. When she recently met with an oncologist who had a horrible doom and gloom attitude, she promptly went out for martinis afterwards with a friend. Then, she called and asked for a new doctor. She was certain to advocate for a doctor who had a more positive and supportive outlook, as well as a better bedside manner. When Grace was diagnosed with EMEE, the neurologist who first diagnosed her had a very stoic personality. I remember him saying that Grace "did not have epilepsy" which made me at first think that everything was okay then. However, after seeing him intently staring at her EEG, whispering to the technician, and then making notes which he did not let us view, we knew something was terribly wrong. The next day we asked for the test to be repeated, and for a new neurologist. Although, as we now know, the test results were the same, the new doctor sat us down privately and thoroughly explained the results in language that we could easily understand. He held our hands every step of the way. He prayed for Grace. And when I broke down in his office crying, begging for him to order us an apnea monitor for Grace, although he knew it wouldn't change the outcome, he wrote the prescription. He supported us every step of the way.

Grace was too young to have a voice, but she had plenty of advocates along the journey of her short life. Through her, we have had the opportunity to meet others who are also working tirelessly to advocate for loved ones. A friend's two-year old daughter was recently diagnosed with JRA (Juvenile Rheumatoid arthritis). What did she do? Immediately she set up a blog to inform others about this disease and her daughter's struggles. She then jumped into involvement and fundraising for the JRA foundation. Her family recently completed a fundraising walk where they raised over $3000 for this cause. She continues to make and sell items for the foundation and will continue her fundraising efforts all year round. Oh yeah, she is also full time mom to two small children, and has both full and part time jobs. She is an advocate, a hero, and a super mom!

This amazing mom told me that she really liked the blog entries where Grace suggests things to do....small tasks and challenges that can make your life better. So, in honor of this mom, along with my dear friend who is battling cancer, and for the person who remembered all of the babies with the wispy pinwheels, Grace asks you to speak up for someone. Do something to advocate for yourself, or better yet, for someone who doesn't have a voice. She looks forward to hearing your stories and your voice.


Saturday, April 30, 2011

Still Searching for Answers


Six months have now passed since we lost our precious baby girl. Eerily enough, around this six month date, I received an email from Grace's geneticist, Dr. Lipson with Kaiser. He had recently attended a lecture about infant epilepsy, specifically the myoclonic type that Grace had. He talked with the presenter about Grace and the presenter mentioned one of the tests that had not been completed was testing for a mutation of the STXBP1 gene. Mutations of this gene are often associated with Ohtahara Syndrome (also known as EIEE). Brien and I remembered that Grace's neurologist had said she presented with EMEE not EIEE, however upon further investigation we are learning that the differences between the two disorders can be very blurry and there is much overlap between the two. Thus, we cannot say for certain which one she had for sure.

Then, we had to ask ourselves, why is all of this of any importance? According to Dr. Lipson, if her epilepsy was caused by a mutation in the STXBP1 gene, the recurrence risk is essentially zero. This genetic type of myoclonic epilepsy is always due to a new occurrence of a mutation in the affected infant. So, our risk of having another child with EIEE would be essentially zero, which is great news. Now the bad news.....the lab is not sure there is enough blood sample left to run the test! So, we continue to play the waiting game and keep praying that by some miracle they will be able to run this "last hope" test, so to speak.

As frustrating as all of this may seem, there have been a lot of positive things happen due to this latest information. Even after several months of what we thought was essentially closing her case, we are so grateful that Dr. Lipson still thinks of Grace and has gone the extra mile in continuing this investigation with us. We also learned that although she may not have had Ohtahara Syndrome, there is an online support community out there for children with this disorder, and it appears as if many, many of them presented with very similar problems as Grace. It has been wonderful to hear from other families who have been through such similar struggles as us and to see many pictures of these infants so similar to Grace. One thing we have found striking is that many of them have pictures with that same euphoric type smile that Grace had. That smile is what gives us hope for the future, while still searching for answers of the past.


Sunday, April 17, 2011

Remembrance Gathering

Last week Holly and I attended a Remembrance Gathering put on by Kaiser Permanente. It’s something they do for families who have lost a child. It gives families an opportunity to see the healthcare providers who cared for their children again. For many families the bonds they made with their child’s doctors and nurses were very strong. This is the 13th year they’ve been doing it.

When we were invited a few weeks ago they asked us to send them some pictures of Grace, which I did. The pictures were for a slide show during the event and for them to create a Remembrance page for Grace. At first I wasn’t sure if I wanted to participate. But after talking to Holly I decided to do it. So I sent six or so pictures of her to the coordinator.

We arrived at the event about 15-minutes early. After following a few signs to the conference room we walked down this long hallway where stood a woman. As we approached she smiled, extended her hand and said “Hello, I’m Grace and welcome to the Remembrance Gatherings.” Holly and I no longer need to look at each other when things like this happen, we already know what the other person is thinking. She ushered us into the conference room and showed us around.

After excusing herself, Holly and I circled a table full of scrapbook pages of all the children that were going to be remembered that night. Obviously we were touched to see Grace’s page their as well as Sara, the daughter of Carol who was in our support group. Its funny how after spending 8-weeks together we’ve come to know each other’s children. At the end of the table were scrapbooks of all the previous children who had been remembered before. I took my time and went through each one, seeing children of all ages. Some looked like normal kids while others were ravished by disease or cancer.

A short while later Carol and her family arrived. It was comforting to see a warm and familiar face. It was also the first time we got to meet her husband and other daughter whom we had heard so much about in group.

The guest speaker that night was Beverley, a Hospice nurse at UC Davis and who was also Grace’s nurse. The first time we met her was the day we were taking Grace home. She came to Kaiser to meet us and do a little paperwork. The next day she arrived at our house to see Grace. She has such a sweet comforting aura about her. I told Holly once she reminded me of a missionary, a genuinely good person who cared about people.

It was the first time we had seen her since Grace’s funeral. So it was nice to see her and catch up. She talked fondly of Grace and how she touched her, which made us feel good. Beverley was also Sara’s hospice nurse.

Beverly’s talk that night was very touching. She talked about losing her father in her arms when she was 16. And that is why she got into nursing. Afterwards they did the slideshow. As people sat quietly they began seeing pictures of their children appear on the screen. I was so touched at the loss of so many innocent lives. It’s really a weird experience to see so many pictures of children playing and being happy knowing they are no longer with us. It’s such a great injustice to see children taken from us so early in life.

As the night came to a close they invited us up one at a time to get a rose in remembrance of our lost child. As Holly returned to her seat with the rose I couldn’t help but look at the clock and wonder if we could make it to the cemetery before dusk, when they close. That’s when Holly said, “do you think we can go to the cemetery?” We gathered our belongings, said our goodbyes and hurried out to the car. I think we hit every green light on the way and made it just in time. It was the first time we had ever been there in the evening. It was very quite and peaceful. I refilled her vase with fresh water and we put the rose in. It was nice to be able to do that after such a wonderful night.

I’m grateful Kaiser put on the Remembrance Gathering. It made us feel special and not forgotten, which is so important to us. They took wonderful care of Grace while she was with us and extended that care to us afterwards.