Thursday, November 25, 2010

Thankful this Thanksgiving

Holly and I would have loved to dress
her up on this special holiday
I know the notion of me being Thankful this Thanksgiving might seem odd considering the recent loss of Grace. But on this Thanksgiving morning, I sit in Gracie's room reflecting on everything that has transpired over these last few months. About our heartache and yes, about the things I'm thankful for. As much as I still hurt and miss her, I'm still thankful for so much.

I'm thankful I have such a wonderful wife I love so much. She was such an incredible mother to Grace and for that I'm eternally grateful. Her connections with Grace through song were truly amazing and exemplify some of the best memories I have of her. I'm thankful for the way she would play with Grace and work on communicating with her. I'm thankful for all the early mornings she got up to take care of her. And I'm thankful we can share in our memories of Gracie and how much she meant to us.

I'm thankful to all her doctors, nurses and therapist who did the best they could to care for Gracie. Many went above and beyond what you would normally expect to attend to Grace. Their care and compassion for Grace made her life better and for that I'm grateful.

I'm thankful to all our friends and family who have supported us during this time. Your generosity and love is beyond anything I can expound here. Just know it touched us greatly and will never be forgotten.

I'm thankful for my health and having a roof over my head. I'm thankful I have such a wonderful son who is growing into a remarkable young man. I'm thankful for our beagle Bodie, who brings us companionship and laughter.

But most of all I'm thankful we had Gracie and could share our lives together for the short time we had her. I'm thankful that I got to be her daddy and love her everyday of her life. I am so grateful we could take care of her and make her life as comfortable and happy as possible. I'm thankful I got to hold her, bath her, play with her, feed her, change her, and love her. We gave Grace every ounce of our love and I know she felt it in her heart.

I love you Gracie and I will never stop being thankful you "Graced" my life.

Saturday, November 20, 2010

The Power of Patience

Yesterday, Brien visited Grace and spent a couple hours gardening around her site. He cleared out dead grass and weeds, planted new grass seed, and was even able to aerate the grass with a special little tool that he made. He did all of this just in time before the rain started yesterday. Rain is forecasted here for the next several days. We know that with care, time, and much patience, new grass will grow again and replace those spots that have perished. I have been thinking a lot this week about lessons Grace has taught us about the power of patience.

Back in June, before she was even born, Brien and I made a huge decision that would greatly affect our personal and business lives. We decided to move our office location in order to expand, be able to offer more services, and be closer to home. Being entrenched in our local community was a very important factor in this decision as well. After a short time spent looking at few different places, we found the one that fit us the best almost immediately. Then, we researched whether buying or leasing the office space would make the most sense for us. Again, our decision was largely based on wanting to be closely involved in the community and also the fact that the office was near our home. We decided that the office would definitely work for our business for the long term and went forward with the process of purchasing the space.

In the meantime, Grace was born and as you know, several weeks later we received the devastating diagnosis. Brien immediately had to assume the roll of her full time caregiver and try and work from home. Our office purchase was set to close at the end of September and then during October we had set for construction to start at the office to build out some rooms. We had no idea how we were going to care for Grace during this time as Brien was going to have to visit the office frequently to supervise the construction project, making sure things were on track, on time, and generally going smoothly. We were thankful to have the support of many friends and family offering to help in her care, however given the complexities of her medical fragility, this would have been a more difficult thing to accomplish now.

Well, we ended up not having to worry about Grace's care because we didn't end up closing the deal in September....or October....during this time, many red-tape issues came up with the purchase, too many boring things to describe here having to do with legislation, small business loans, and many boring blah blah government agencies. During these past couple of weeks, Brien and I had grown very frustrated over the whole thing and were starting to think maybe it just wasn't meant to work out at all. Then, last week, when we had just about reached our frustration limits, we ended up finally closing the deal.

Today, here I sit in her room, reflecting over all of the past month's activities. I realize that patience truly is virtuous. Because the whole deal took so much longer than expected, I believe it was much easier for us to truly focus on Grace, not only on taking the best care of her, but also being able to treasure every moment we had with her and making each day special. We even had plans to set her up in a playpen at the new office so that we wouldn't have to be away from her for a second. Although we are very saddened that the playpen plan never happened, we do take great comfort in knowing that Grace knew best, she had a plan for us that we may not have necessarily saw then, but now we can see it just a little more clear. This week, Grace asks you to remember the power of patience. She knows that good things come to those who wait.

Saturday, November 13, 2010

Gracie's shoes

Okay, once I tried to put shoes on Grace. They lasted about thirty seconds before she abruptly kicked them off. Lesson learned, newborns don't care for shoes, I guess they prefer to be footloose and fancy free! A couple of our friends gave us some ballet slippers for Grace at her memorial services and we put them at her grave site. I think she is wearing them and definitely dancing with angels. We visited her yesterday and noticed that someone else had been there this past week, we don't know who, but they left a very sweet angel ornament and a couple of roses. If that person is following this blog, we thank you for your random act of kindness. This week, I do believe our angel worked her magic once again. Let me tell you what a lesson Grace has taught us.

These past few weeks Brien has been working very diligently at planning a perfect memorial marker for Grace. I am very thankful that he has taken the lead on designing such a wonderful tribute for our baby girl. The first thing he did was to measure the other markers in the garden of angels to figure out what size we needed for hers. We noticed that there were a few markers there that were bigger than the others and, of course, we wanted Grace's to be as big as possible so we compared these to the cemetery's guidelines for size. They were slightly larger than what the guidelines stated so Brien called the cemetery director to confirm that the size we wanted was going to be alright. The director stated that the families who had the bigger markers unfortunately had not been given the size guidelines ahead of time, and we absolutely had to adhere to the guidelines given. This was very upsetting to us, we thought, why can't Grace's memorial be just as big and special as some of the others? Brien was fired up and his passion for this got me fired up as well. Our next step was to attend the board meeting for the cemetery and plead our case.

Well, we never got that far. Brien came to me that evening and said he had a change of heart. He thought of how the other children's families might feel coming to the site and seeing that her marker was bigger than most of the others. Right now, there are no other children that are right next to her site, however, in the future, the grim reality is that there will be others. Imagine a child who was laid to rest next to her and their family seeing that they didn't have as much space as Grace. How would we feel if we were that child's parents? We immediately decided that we could make her marker just as special and as beautiful as we wanted it to be and still adhere to the cemetery's guidelines. I have been thinking about this all week and about how amazed I am at my husband's realization that we need to be gracious about this matter. He is truly the most unselfish person that I know and he is teaching me to be a better person. That's just one of an endless number of reasons why I love him so very much.

So, this week, for Grace, take a walk in someone else's shoes. Before you react to some situation that seems to outrage you, take a moment and put on the shoes of another. You may just see things in a different light and decide that the new shoes fit just fine.

Monday, November 8, 2010

The Lost Highway

It's been just over two weeks since Grace passed away. And it's just as painful now as it was then. We continue to struggle with the loss of our precious baby. There isn't an hour that goes by we don't think about her. There are so many emotions associated with the loss of Grace, but none more fitting then the word Sad. I just feel so sad. The pain tears at my heart. We struggle to find solace, but none is to be found.

The first week was definitely the hardest. Holly and I were faced with making the necessary burial arrangements while our wounds were still open. We had family and friends in town to attend to. And we were dealing with business matters that couldn't be ignored. So I think we both felt like we were just hanging on by a thread. I don't think it was until after the memorial service and everyone had gone home that I felt like I could really start the mourning process.

Holly and I both like spending time in her room. It's the one place we feel the closest to her. We can sit in there peacefully and talk to her or reflect on our loss. There are a couple of blankets we haven't washed so we can still smell her and feel her close to us. We keep the onsie she was wearing when she passed away in her crib. And of course all the pictures and videos. We're so grateful we took so many pictures and videos. But I still wish I had more.

Here's a video I shot on September 22. I was working in the office and she was lying on the bed behind me. I remember hearing cute sounds from her. I turned around and saw her smiling. I grabbed my phone and took this video.

I know Holly and I remember the good times much more then the bad. The way the seizures progressed and ravished her poor little body. We were talking the other night about how quickly her condition deteriorated. She passed away exactly two months after being diagnosed with EMEE. What started out as 1-2 seizures a day had progressed to 40-50 a day. Even though at the time she died we started to see an improvement, it was clearly too late. We really felt we would have much more time with Grace then we did. We never expected her life to be cut so short.

I'm so grateful we had the good times though. Of course we had bath time, and going for walks but perhaps the one thing I miss the most was our late nights together. I would stay up to 1-2:00 am to do her late night feeding. Many times I'd hear her getting restless so I'd grab her and bring her out into the living room with me. We'd lie down on the couch next to each other and snuggle under a blanket. She would often fall asleep right away but I would continue to relish in the euphoria of having her next to me. It brought me so much joy and happiness. And I know Holly had the same special time with Grace early in the mornings. I think it means a lot to both of us that we each had our own special time alone with Grace.

Today the house is quiet and to a certain extent empty. Our lives used to be busy attending to Grace. She was always in the forefront. Now there is no one to attend to other then the dog. What was once the beginnings of our family, is now back to a couple and a dog. I know this hurts Holly so much. She so wanted to have a baby and be a mother. As much as I'm hurting I know it's much more painful for Holly. There is no comparison to the bond of a mother and child. Holly so loved being pregnant and establishing that bond with Grace. It was so evident when you look at the first few pictures of Holly holding Grace. I wish there was something I could say or do to help her, but there isn't. We talk a lot. We try and put things in perspective and apply some sort of reasoning and understanding to our loss. But they're only temporary rationalizations. There is no comfort to be found.

So we go about our daily lives trying to cope with our loss the best we can. I know it will take time, and lots of it for the pain to go away. But the memory of Grace will live on in our hearts forever.

Sunday, November 7, 2010

Gracie Month by Jamie Heller

Rainy days are the worst. Grace passed away on a gloomy, rainy day. Thus, for the rest of our lives the rain will be a reminder of the worst day of our lives. Trying to look for some brightness in today, I decided to read again something that our dear friend, Jamie wrote about how Grace touched her life in many ways. She even had the courage to stand up at Grace's services and read this. It was, without a doubt, one of the most touching moments of the service. Reading these touching words again has helped put a bit of sunshine into my otherwise dreary day today. For those of you who didn't have the opportunity to attend her services, or for anyone who needs a bit of sun in their day, I encourage you to read Jamie's heartfelt words. We love you Jamie Heller.

In July Gracie came into this world and taught us the joy of life and the comfort of those we love. In August she taught us about challenges, perseverance and strength. September was the prime of young Gracie’s life and she gave us so much. In just 3 months, Gracie and her parents helped us all to cherish some of the very fundamental life experiences that make us human including the gifts of hope and love.

Gracie reminded us to go out take a walk, enjoy the beauty of life and to reconnect with the one we love. Gracie reminded many of us to keep the grand scheme of life in perspective and not sweat the small stuff. She taught us to be open to and tolerant of people and maybe make a new friend or two along the way. Above all Gracie reminded us to find the good in every day.

Here it is October and Gracie has taught us to not put things off because you may never know if or when you’ll have the chance to do it. Gracie’s final lesson in life came to us this month, the lesson of selflessness of her parents who always did only what was best for Gracie.

Brien and Holly’s selflessness is apparent to all who know them. They continued their blog, Gracie’s Journey to teach us valuable life lessons as they learned them. They never complained and they never gave up.

So thank you young Gracie for the lessons you taught in July, August, September and October as we will carry them through all the months of the year. We will honor you by loving and cherishing those around us, finding the good in every day, persevering when times are tough and being selfless in the face of hardship. So rest peacefully young Grace we were all honored to have known you.

Jamie Heller

Monday, November 1, 2010

Just The Way You Are

I wanted to share this video tribute to our beautiful baby Grace. It includes the song "Just The Way You Are" by Bruno Mars. The first time I heard this song I knew it would be ours forever.


I sit here in Grace’s room at 8:48 on Monday morning. Brien and I have been in and out of her room numerous times over the past week. Her room is filled with flowers and smells just heavenly. Brien just commented that it smells sweeter and sweeter in her room every day. As I sit here today, my thoughts turn to all of the signs we have noticed over the past week that indicated she is still with us in many small ways.

As Brien has so eloquently explained, the greatest gift Grace gave us was the way she passed on, smiling peacefully and squeezing Brien’s finger were the most powerful signs that brought great comfort to us. Several other things happened that day as well, and at the time we didn’t notice all of them, but some of our observant friends did notice. That day was gloomy and rainy, and we had four of our close friends at the house that had stayed the night previously. Our friends Renee and Carl left early that morning to take care of a few things at home and then planned to come back over later in the day. Shortly after they left that morning was when Grace passed away. Our friend Audrey immediately called them to tell them the news since they had just left. Both of them proceeded to immediately turn their cars around and race back to our house. At that moment, they both noticed that the rain stopped. There was a break in the rain from that point on until Grace was taken away in the hearse. Once she was taken away, the rain poured and the wind blew fiercely for the next two days.

When Brien informed our friend, Audrey, that Grace had passed, Audrey stepped outside of our house. She noticed a single black crow flying overhead and thought that was odd since crows usually travel in groups. After doing a little research, Audrey shared with me that she found that in mythology and folklore as a whole, crows tend to be symbolic more of the spiritual aspect of death, or the transition of the spirit into the afterlife. It’s amazing to me that she witnessed this just minutes after Grace had passed.

Fast forward a few days to October 27th, 2010. Grace’s obituary was due to show up in the newspaper that morning. I woke early around 6:30am to bring in the paper so it would be ready for Brien to read when he awoke. He spent hours laboring over the right words to use for the newspaper and I knew he would want to read it as soon as he got up. But, to my dismay, no paper had arrived. No big deal, I thought, our paper usually arrives between 6:30-7:00am so I guess we just needed to wait a little while. Brien awoke around 7:30am and the paper still had not arrived which we were starting to think was a little odd. Brien called the newspaper office to make sure we were going to receive a paper. I went and sat in Grace’s room around 8:30am as I had done many mornings since she passed. As I sat there staring out the window, I saw a man walking to our front door to deliver the newspaper. I looked at the digital clock in the room, it was 8:44 am, the exact hour that Grace had passed away. Maybe just a weird coincidence….but maybe not. Perhaps she thought it fitting for her obituary to arrive at this exact time.

Brien mentioned in the previous post that we witnessed one of the butterflies from her service appear out of one of the flower arrangements that afternoon after we buried Grace. That is a sign we won’t soon forget. Let me explain why. Yesterday (Sunday) we went out to the cemetery to visit Grace. Her grave site was just as beautiful as we had left it, all of the flowers were still perfectly placed, looked wonderful, and smelled just as sweet as they had on Friday. Brien and I talked with her and then just sat for a long time with her. We then decided to walk around the cemetery, it’s such a beautiful place and so serene. After walking around, we returned to Grace’s site to visit once more and say goodbye. We sat again for several minutes and then a butterfly gently fluttered by us and landed on one of Grace’s pink flowers. Brien and I were completely amazed and in awe, once again. We truly believe she is still with us, and the signs are all around us indicating so.

Both Brien and I want to continue Grace’s blog. It may change and evolve over time, as does life. But for now, I’d like you to continue to do something each week for Gracie. It’s a small way to indicate we will not forget the lessons she has taught, and will continue to teach us. Are you open to receiving signs? Grace asks this week that you look for a sign in something simple or just acknowledge some simple gift in your life. She thanks you for doing this for her.