Friday, December 30, 2011
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
Friday, December 23, 2011
Tuesday, December 20, 2011
Sunday, December 18, 2011
Monday, December 5, 2011
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.
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
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|
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
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
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.
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
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.
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
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
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.
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
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|
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
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
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.
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
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
|August 23, 2010|
Saturday, July 30, 2011
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
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.
Wednesday, July 13, 2011
Tuesday, July 12, 2011
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.
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
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.
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
Saturday, June 11, 2011
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.
Wednesday, June 8, 2011
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.
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
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.
Saturday, April 30, 2011
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.