After the long wait, I received a draft of the report from the SUDC research study this afternoon. I emailed the research associate earlier in the week to check on the status of Alexander’s case review and she told me to expect the report this week. I told myself I would wait before reading the report but as soon as I saw the email today, I had to stop what I was doing and read it.
I had mixed emotions about finally getting the report. Part of me was filled with dread there would be no answers and I would be left to wonder what happened to my child and why. The other part of me was scared they would find something that I should have known about and prevented Alexander’s death. Either way, it was going to be hard to read.
Much of the report was based on family history that Dan and I provided along with Alexander’s medical records so it was all information I knew. Based on this information and evaluation of tissue samples provided by the medical examiner in our town, Dr. Krous and his team concluded that Alexander’s death was caused by Sudden Unexplained Death in Childhood. The report did say they couldn’t rule our cardiac arrhythmia (such as that caused by Long QT syndrome). I’ve been in touch with the Long QT study at the Mayo Clinic to check on the status of Alexander’s case review with them but haven’t back yet.
So, for now, we still have no answers. I’m a bit numb and feeling a wide mix of emotions. I’ll probably reread the report and then schedule a conference call with Dr. Krous in a few weeks to review his findings. For now, I just need to let the report conclusion to soak in.
I got word yesterday from the SUDC study that the active review of Alexander’s case has finally begun. The active review has three parts and will take them almost a year to complete.
Here’s the review process:
Part I—the abstracting of Alexander’s medical history; this takes on average 2-3 months.
Part II—the neuropathology review; this takes an average of 3-5 months.
Part III—Dr. Krous’ comprehensive review and diagnosis follows and is generally completed within 1-2 months
Even though we’re participating in the study, I know it’s likely that we’ll never really know happened but I have to do everything I can to find answers.
Can it really be two years that Alexander has been gone?
When I woke this morning, I was too sad to move and just lay in bed thinking about Alexander. Once I finally managed to get out of bed, I watched the touching memorial video (http://www.totsites.com/tot/dodsonemerson/movies/29452) from Alexander’s funeral that friends put together for us. Watching the video, I thought about all the wonderful times we had with Alexander during his much too short life.
Dan and I went to the cemetery this afternoon and did a little cleaning. We also brought a couple of things to decorate Alexander’s grave. For the first time, we decorated the little tree that someone left for him. It felt good to be doing this for Alexander. After Dan left (I asked him to let me have a few minutes alone), I sat and cried.
Time has lessened the rawness of the pain but I still miss Alexander so much.
A conversation I had with Dan on November 25:
Dan (smiling): Happy Birthday! How are you feeling?
Me (through tears): Sad. I’m just sad.
Dan (hesitantly): Alexander sad.
Me: Yes, Alexander sad.
So, we now have a new term to describe our emotions when we’re feeling sad about Alexander and not something else.
This December will mark TWO years that Alexander has been gone and our “new normal” continues to evolve.
Today is November 25, 2010. Thanksgiving Day and my 40th birthday. My life certainly isn’t where I thought it’d be at this point.
We had been planning to take a trip to France for my 40th and introduce Alexander to Europe. Dan asked me if I still wanted to take the trip. As much as I’ve wanted to explore France’s champagne region, I just couldn’t do it. I know I would spend so much time missing Alexander that it wouldn’t be a good trip for either of us. We did celebrate with a few friends over the weekend and the party was nice. It was a few hours to focus on me and not think about my sadness at not being able to mark this milestone in my life with Alexander. Now, I don’t want to be reminded that today is my birthday. That I’m a year older. That I’ve entered a new decade. That my life isn’t where it’s supposed to be.
Recently, Dan and I went to grab a bite at a local restaurant. It’s one of the those neighborhood places where the bartenders know your name and you’ll likely run into several people you know. As we entered, someone across the bar waved hello. In a low voice, his date said, ‘Oh, they’re without the baby’. He quickly responded to her, ‘They’re the ones…’. You know the rest.
I guess Dan and I have become “those people”. Those people that people whisper about and feel sorry for because something has gone so wrong in their life. Things don’t get any worse than your child dying. I never thought we’d be one of those people but here we are.
I miss Alexander so much and especially on days like today.
Alexander’s Run Update – We had our first Alexander’s Run on October 30. It was a wonderful day in celebration of Alexander and all the other children lost to SUDC. In addition to an amazing planning committee, we received support from many volunteers, sponsors and runners/walkers. We’re definitely planning to do it again.
May 3, 2007 – December 20, 2008 = 19 months and 17 days.
This past Saturday, August 7, 2010, marked 19 months and 18 days since Alexander left us. He’s now been gone longer than he was with us. I had been dreading the day for months. When the actual day happened, it wasn’t as hard as I imagined. I found it didn’t matter how long Alexander was gone. The fact is he is gone and I’ll never again have the wonderful gift of a hug or a kiss from him.
As a grieving parent, you try not to think of these “anniversaries” but sometimes you can’t help it. They just creep into your mind.
I should be running after a 3 year old these days but instead I’m left to grieve the loss of my child. I miss Alexander so much.
Plans for Alexander’s Run are shaping up. We’ve got a great group of people helping us organize the run. It should be a wonderful day to raise money for SUDC research and Alexander’s scholarship fun while remembering Alexander and all the other children who have lost their lives to SUDC.
Before I got pregnant, what became Alexander’s room started out as my office. There are two closets in his room so I left a lot of my work stuff in there and shared the space with Alexander. I have a laptop so I was able to have a roving office in our house.
A couple of weeks ago, I decided to move my stuff from Alexander’s closet to the guest room. I just couldn’t bear to continue to go into his empty room everyday when I needed to get something. Now, when I go into his room, it’s to reflect on all the wonderful memories I have of Alexander.
Instead of my work stuff, Alexander’s closet is now full of photos and albums. I think of it now as my memory closet.
Moving things from one room to another was a big step for me. It’s the first real change I’ve made to Alexander’s room. Everything else remains the same. The crib is still there as well as all his clothes and toys. I still haven’t been able to wash the basket of laundry but there is no hurry. I just have to continue to do things when it’s right for me.
I miss my little guy so much.
A few days ago I had to go to the hospital for some testing. The doctor I was seeing only performs the test one day a week at the hospital where Alexander passed. I had the option of seeing the other doctor in the practice and going to the other local hospital but really wanted this doctor to do my tests.
The tests went easily but it was hard for me to be in the hospital. It was the first time I had been in the building since Alexander passed. I was quietly sobbing and finally the doctor asked what was wrong. I told him and he said he thought I looked a little sad when I came in the room. He tried to be comforting but there was really nothing he could do. This was just another first in the long list of firsts I’ve had to endure the 19 months.
On Friday, Dan and I had the opportunity to see the final show of the Stuart Country Day School Summer Stars program. Alexander’s scholarship fund helped 9 students attend the camp this year. When we first arrived, we took a quick tour of the children’s art and then we went to find my contact at the school. As soon as she said “thank you”, I could feel the tears welling up in my eyes and I thought I was going to lose it.
Dan described the experience as bittersweet and I think that’s the right word for me, too. The show itself was good and it was nice to see and hear what the kids had been doing during the camp. At the same time, it was sad to be there.
I still have bouts of crying every so often when I think about how much I miss Alexander. I’m not sure that will ever change so I’m learning to cope with it as part of my new normal.
Dan was away this weekend and I planned to get a lot of things done around the house. I didn’t get everything I wanted done but I made some good progress. I managed to get the plants repotted and mowed our little patch of grass.
I stopped by the cemetery to visit Alexander’s grave. I was there a few days prior and realized the headstone needed cleaning so I went armed with cleaning wipes yesterday. The headstone was just a little dusty before but yesterday it was covered in bird poop. Not really a sight I wanted to see. So, now I’ve got a new job: keeping the headstone clean. My new job is yet another thing I never thought I’d be doing in my life.
I haven’t posted in a while because things have been status quo.
I think about Alexander all the time. The sadness and loneliness I feel at him not being here have become my constant companions. Most days I manage okay. I don’t cry every day like I used to and I can think about the happy moments.
Dan and I went to see Alexander’s headstone for the first time on Friday. It’s actually a family headstone since we also have our names engraved on it, too. Seeing my own name on the stone didn’t bother me. Seeing Alexander’s birth and death (still a hard word for me to say) dates at such a young age brought on another wave of sadness. Parents are not supposed to outlive their children.
I should be planning Alexander’s 3rd birthday party and instead I’m designing a headstone. It’s just another very sad experience in a long line of sad experiences I’ve had since December 20, 2008.