What a Year!

Pajama Jam '09

I remember New Year's Eve 2009 like it was yesterday. I remember thinking what a great year it was going to be. I had such high expectations for 2010. I remember telling Holly it was going to be the best year of our lives. With a baby due in the summer and the prospects of financial gain from my lawsuit, our future looked bright.

I guess as every year comes to an end you're compelled to reflect on the noteworthy events of the past year. There were certainly no shortage of events this year. When I think about this past year it starts in January. It was at that time I had my surgery and was bed-ridden for three weeks while recovering from one of the most horrific procedures one can imagine. It took two months to completely heal and now it’s just a fading memory.

During that time I was also in the middle of my lawsuit against The ICEE Company for trademark infringement. Which led to probably one of the few highlights of the year, a nice settlement check from them.

Of course during all of this Holly was pregnant with Grace. We were enjoying the pregnancy process and all the things that come along with it. We had such high expectations for our new baby and the way it was going to change our lives forever.

In February the water main to the house broke. This is what our front yard looked like for a couple of weeks while it was being repaired. 

In the spring, Holly and I were debating on what to do with our office when the lease expired in September. We had been at our current office for three years and simply outgrew it. There were some days I couldn’t go in because there was nowhere for me to sit and work. Plus we wanted to be closer to home and our new baby due in July.

So we called up our broker and started looking at new offices. He took us out and showed us some offices close to our house. Places we couldn’t have afforded 3 years ago were now in our budget. So after careful consideration we decided to purchase an office instead of leasing one. Something we would have never done if we had known about Grace’s condition beforehand.

July 13 was such a joyous day for us. We were so excited Grace came into this world and joined our family. For months Holly carried Grace and felt her every movement. On this day we got to meet our little bundle of joy for the first time.

About a month before Grace was born we started the loan process through the SBA for the office. We knew doing so during Holly’s last month of pregnancy could be challenging, but we figured everything would go smoothly and we could handle both. However, something that should have only taken two months to complete took over five months due to the incompetency of the bank and the SBA being paralyzed by bureaucracy. During those five months we gave birth to Grace, spent two weeks in the hospital with her, discovered her rare seizure disorder, were placed on Hospice care and her untimely death. It was a very trying time to say the least.

Then a day after we closed escrow we were notified one of our biggest contracts was being terminated. This was by far the biggest setback of our professional lives. I likened it to a swift punch in the gut that sucked the air right out of us. This significant loss in revenue was going to greatly affect our ability to operate and yes pay for our new dream office.

After escrow closed we still had to wait another month for the tenant improvements to get done. This just continued the ongoing saga of this purchase and all the stress associated with it. I had to put on my project management hat now and make sure everything was getting done to our specifications. I felt this just compounded the stress of losing Grace and took away from my time to mourn in peace.

Construction ended on my birthday and we were able to move in. It was one of the best feelings I’ve had all year. As soon as the last contractor walked out our door Holly and I embraced and cried in relief it was all over. The sleepless nights have ended and I have a certain sense of peace about me now. Perhaps it’s a fitting end to a trying year.

Earlier this week Holly had her Thyroid removed. She’s had a nodule on it for years and we’ve taken the wait and see approach to it. At every doctor’s appointment her doctor gets more and more adamant about removing it. This time he finally persuaded us. We met with a surgeon a week later and he said he would schedule it for the Spring. But then a couple days later he called back and said he had a cancellation and wanted to get her in on 12/29. Being a slow time of year for us we jumped at the opportunity to do it now. Fortunately everything went as planned and she's home resting now.

So we ended the year back in the hospital. I can’t believe how much time we’ve spent in the hospital this year. We should get a Thank You card or punch-card for a free burrito or something.

We'll spend New Year's Eve at home tonight. What a welcome relief I might add. I can't remember the last time I stayed home on a New Year's Eve, but I've never wanted to stay home as much as I do this year. I don't know what 2011 has in hold for us. All I do know is we'll continue to embrace life and make the best out of any situation fate throws our way.

Our last hope

I haven't spoken much about all the tests that were done prior to Grace's discharge from the hospital in August. If you remember, they drew a lot of blood that was then sent off for DNA testing at four different labs across the country. Many of these tests took months to complete.

A few weeks ago we got the final results, everything was normal. So why didn't I say anything you may be asking yourself. Because in this case, no news is not necessarily good news. Meaning her doctors still don't know what caused the Early Myoclonic Epileptic Encephalopathy. And without knowing we're left in the dark.

We've spoken many times over the last few weeks with her Geneticist, our last hope to answers. He's so kind and understanding it makes dealing with this easier. The last time we spoke he said he wanted to confer with some of his colleagues to review her case and see if there were any other tests we could do. After doing so he said there was one last test we could do for something called Ceroid Lipofuscinosis. Unfortunately, they have no more blood for the test. So we're left with the remaining blood from a heal prick they do on newborns that's then sent to the CA Dept. of Public Health's Genetics Screening Program. So today Holly and I submitted a Notarized request to have the remaining sample sent to another lab for testing. It's very disheartening to know there will be no other tests available to us after this. There's still a chance there might be some blood left over at one of the previous DNA labs, but for now this is it.

Of course I Googled Ceroid Lipofuscinosis and from what I could understand saw very few similarities to Grace's onset and condition. So I called the Geneticist back to talk about the differences from what I read to Grace's symptoms. Although he disputed some of the claims about the age of onset, he agreed there were still differences from this condition and what we saw in Grace. But we're grasping at straws here and this is our last hope at finding the root of the EMEE.

So where does this leave us? It leaves us with little hope to knowing what brought on the EMEE. In medical lingo they call that idiopathic. That one word is what makes this so hard to understand and cope with. Not only for our own piece of mind, but also our future. If Grace's condition was brought on by a recessive gene the likelihood of having another child with EMEE is a staggering 1:4. Now those odds can change, but right now that's where we're at. I guess ultimately that's why I haven't written about this, still too much uncertainty. I don't like leaving things vague and without closure.

If the lab can run the test on the heal stick we should get an answer in about a month. But the odds of her having Ceroid Lipofuscinosis are slim. After which time we'll meet with the Geneticist and see where we're at.

My Christmas Story

It’s quiet in the house right now. Not a creature is stirring, not even a mouse. Santa is presumably circling the globe delivering presents and joy. Holly’s in bed sleeping soundly and I’m sitting in Grace’s dimly lit room writing. I find such solace being in here. It’s a special place to go and reflect.

This will probably be the first Christmas Eve where I don’t go to bed with a sense of excitement and anticipation for the morning. No, this year it’s about heartache and reflection. They say the holidays are especially hard for families who have endured the loss of a loved one. Personally, I don’t think the holidays have anything to do with it, we’d still be feeling the same way. Oh how I miss her so much. No words can express how I feel. My heart continues to ache with no end in sight. I have never cried so much in my entire life then I have over these last few months.

Even though Grace isn’t with us this Christmas we have tried to surround ourselves with her memory. We’ve printed up lots of pictures of her for around the house. We’ve adorned our Christmas tree with special ornaments in memory of her. And of course Holly and I share stories about her and the special times we shared together. Then tonight another special sign she’s still with us in spirit.

Holly and I went to a nice restaurant for dinner and on the way home we decided to go to old Sac for a horse and carriage ride. It just seemed like the perfect ending to a lovely Christmas Eve. When we arrived there was a small line of families seeking a ride as well. Holly and I stood there quietly looking off into the distance while hearing the faint rhythmic sound of horseshoes hitting the asphalt. We then heard a little boy go up to a girl sitting on a bench behind us and say “Can I sit with you Gracie?” Holly and I immediately turned to each other thinking the same thing. I could see tears well up in Holly's eyes as I strived to hold mine back. We looked behind us and saw this cute little blond girl quietly sitting there. It was like an angel telling us she's still with us. I am so grateful for these reminders. Perhaps these signs is what will bring me peace one day.

We visited Grace today and brought her a little Christmas tree. We told her how much we miss her. How much she would have loved experiencing her first Christmas with us. We will continue to celebrate Christmas with our little angel by our side. Thank you for the signs and reminding us you’re never far away. We love you Gracie.

Have Courage

I took a break from the blog after my last post. I'm still tired but have been able to get out of bed a little easier each morning and back into some old routines. A couple weeks ago, I was cleaning my cell phone and when I reached to put it back in the case, I noticed a message was inscribed on the inside of the case. It said "have courage." I never realized the message was there despite taking it off usually on a weekly basis. It made me wonder about the many times in which I was not courageous and why this was so. What makes us lack courage? What are we frightened about? For me, often times it is the mere possibility of conflict that usually gets in the way.

Grace lived every day with every ounce of courage she had. Despite the constant seizures, insufficient breathing, oral challenges, and her overall severe developmental delays, she thrived during those short three months because she was not scared. Children are so courageous as they are not yet tainted by the toils and trauma that life brings to all of us. Despite being an innocent victim, Grace exhibited more courage than I ever have seen, just her will to live.

Because of her, we have been so fortunate to witness many acts of courage over these past weeks. Someone had the courage to leave us an anonymous gift of a Christmas Jar, which truly embodied the spirit of the season. Another person had the courage to email us supportive words as someone who had also lost a daughter to Grace's same rare condition. Her daughter passed away a few years ago so I can only imagine what types of emotions must have come flooding back to her when reading about Grace. Small acts of courage which made a such a huge impact on both Brien and myself.

So, for Grace, I am now going to start working on being more courageous in whatever small ways that I can handle. Being blessed with a career that I love and the wonderful interactions we have with so many families on a daily basis make each day worthwhile. Not to mention our wonderful, flexible, and supportive employees. I have to be more courageous in going the extra mile for all of our families and employees. I have to be more courageous in going the extra mile for myself and for my wonderful husband.

I'm starting by focusing on my health during this last month of the year. After many years of putting off some minor surgery, I am finally going to take care of the problem once and for all. The chapter needs to be closed and I need to have courage to close it. I am hopeful that having this courage will be the first step to a much better new year. Grace would have wanted it that way. She would have wanted you to have courage too for whatever life's challenges are brought to your new year. Please share with us and Grace your stories of courage.

Tired

Tired. There’s no other word to better describe the feelings of this past week. I’m tired of feeling blue. I’m tired of the rain. I’m tired of living in the fog. I’m tired of not being able to sleep. I’m tired of struggling to get up in the morning. I’m tired of asking why. There are no answers so we must choose. Either continue to be tired or rest and realize that tomorrow is a new day. I know that one day I will wake up and not be so tired.

Thus, I choose to realize those things I am not tired of and hope they will out number the things that I am. I never tire of looking at Grace’s pictures or videos. I never tire of sitting in her room and remembering many precious moments that were spent there. I never tire of remembering how much I loved changing her diaper or dressing her in a precious outfit for a new day. I never tire of seeing how, in her pictures, she was a perfect extension of us. I never tire of seeing her big blue eyes every time I look into my husband’s eyes. I never tire of hearing so many stories about how she has touched people in seemingly random ways.

So tonight I will go to sleep tired, hoping that tomorrow I will wake up just a little less tired than the day before. I know that I must continue through this process, finding a new me, and hopefully discovering some new gifts a long the way.