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.
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.
to be removed from the Babies R Us/Toys R Us mailing list?
Last Monday, I had some minor surgery (I’m doing fine) but still needed to spend some time at home resting so my body could recuperate. By Thursday, I was ready to get out and run a few errands. The day was going o.k. until the mail arrived.
In the mail was a Happy Birthday coupon for Alexander from the Geoffrey’s Birthday Club. Once again, Babies R Us ignored my plea to be removed from their mailing list and once again, I had to call to explain to them why I wanted to be removed. The customer service rep I spoke to acknowledged they had record of my previous request. After speaking to the first customer service rep, I was transferred to someone in corporate customer service. Demetria said she’d put in my request again. However, they sometimes receive updated information after a request is made. I’d love to know what “updated information” takes precedence over a mother’s tearful plea.
Demetria began to tell me about how she lost her son a few years ago but then quickly stopped. She said her son was older and she had no way of knowing what I was feeling. I was in tears and appreciate her trying to comfort me, but her efforts at bonding didn’t help.
I’ve been trying for a year to get off their list. It feels like I have to call them every 2 months (I’ve started keeping a record of the date of my calls) and nothing works. I don’t what I’ll do if I get something else from them. Maybe write a letter to the Chairman of the Board and the rest of the Executive Committee? I’m sure they’ll never see it but on the chance they do, I’m sure they’d love to hear the story of how despite my repeated efforts, this desperate mother can’t get off their list.
The rest of the week went fine. I tried to stay busy and Dan and I had dinner plans with friends on Friday and Saturday night.
Today will be another day of rest and relaxation before I begin a very busy week.
Life has been busy lately. I’ve found myself really having to juggle to feel like I’m staying on top of everything. Through it all, my thoughts of Alexander remain foremost in my mind. Some days my Alexander thoughts bring me comfort as I remember all the joy and laughter he brought to my life. Other days, like today, the sadness overtakes me and I can’t stop the flow of tears.
I watched a couple of Alexander videos this morning because I needed to see him happy and hear his voice. They just made me miss him even more.
This Sunday is Valentine’s Day. Alexander only got to celebrate one. I get so sad when I think of the many firsts that he will never get to celebrate a second time. I think this combined with the mounds of snow surrounding us really has me down. The snow makes me think about trip to Killington and taking Alexander on his first sled rides and knowing that he would have such fun with the powdery stuff outside now.
I find myself stuck in that place where I feel if I stop thinking and talking about Alexander so much, people will forget him. Yet, if I don’t move forward just a little, I feel like my heartache will crush me. I’m not sure why I need others to remember him because he’ll always be a part of me.
I have a meeting in a couple of hours so need to pull myself together to face the day.