Dan and I attended the SUDC program’s 10th anniversary event in NY this past Saturday. On the one hand, it was wonderful to meet some of the parents I’ve only known through the online support groups. On the other hand, the reason that brought us all together made me sad. I don’t know what we would have done if the SUDC program hadn’t existed when we needed it.
Despite being surrounded by family and friends, I felt so alone during those first days after Alexander passed. Time has helped decrease the intensity of my pain but I still miss Alexander so much.
The SUDC Program – Who We Are
I’d forgotten how exhausting a newborn could be. Alexander’s younger brother, Daniel was born November 17 and has been keeping me very busy. I barely have time to sleep much less do things like update my blog.
I’ve been so tired, I don’t think I’ve really had a chance to process my feelings about Alexander’s anniversary. It’s hard to believe Alexander has been gone 3 years. On his anniversary date, we spent a quiet day at home and went to cemetery in the afternoon.
Recently, a friend asked me if it gets any easier. I told her I don’t think it gets easier. Alexander’s loss has become part of me and is something I must deal with on a daily basis. Some days are better than others. Now that Daniel has arrived, I’m trying to find a balance between being happy for the child that I have here with me and being sad and missing the child that is gone.
I talk to Daniel about Alexander and we look at pictures of him. I think Alexander and Daniel would have been great friends and I wish my boys could have grown up together.
Why do perfect strangers think it’s o.k. to ask questions about my pregnancy? When are you due? Is this your first? I think I’ll pull my hair out if one more person asks me if this is my first pregnancy. I’m thinking of getting a t-shirt made with ‘No, this isn’t my first pregnancy. My first child is named Alexander and he died in December 2008. Now, back off and stop asking me questions.’ The sign may seem a little harsh but I’m so tired of strangers asking questions. Why can’t they just leave me alone and let me enjoy my pregnancy.
Since losing Alexander, I have definitely become more sensitive. Questions I thought were innocent before can now cause a deep wound. It has also made me realize that you just never know what a person’s situation is or what they’re going through at any given time. So, it might be better to wait and let them take the lead in what they want to share.
Drawing of Alexander done by a friend
As I continue my preparations for the arrival of Baby Dodson2, I find myself missing Alexander even more.
At times, when I’m talking to the baby, I call him Alexander instead of the name we’ve chosen for him. I’m looking forward to his arrival and I know he isn’t Alexander, but I can’t help the name slip ups. I really wish they could be growing up together.
Today, was the 2nd Annual Alexander’s Run. Though the weather forecast predicated rain and a mix of snow, we decided to have the fun anyway. We had no idea how many, if any, runners would show up on race morning. Some people didn’t make it but Dan and I were truly surprised, overwhelmed, and grateful for all the support we received at this morning’s event.
The tents we’d arranged for didn’t arrive on time but no one complained as we had to scramble for tents. The runners were patient as we opened registration late. The kids who did come in costumes were cheerful as they stood under the tents and grooved to the music of Alex Mitnick. It was an amazing day and I’m so glad we continue to celebrate Alexander and the other SUDC children with this run.
Over the weekend, I began the difficult task of starting to pack up some of Alexander’s things. I didn’t want to do it but we need the room for his little brother who will be arriving at Thanksgiving.
A couple of weeks ago, I brought up several containers of Alexander’s stuff from the basement to go through it to see what I could use for this baby. Most of it was feeding and cleaning supplies (bottles, burping cloths, wash cloths, etc.). Since the boys will be born in different seasons (Alexander in May and this baby in November), they probably won’t be able to share many clothes. I did pull out what I could from Alexander’s things and a friend gave me a few things. I should be good for the first few months.
For the first 30 minutes, all I could do was cry. It felt like I was packing away Alexander with each item that I put in the box. I packed until we needed to leave to meet friends for dinner. I was very happy to have the break. I did make a dent in what needed to be done and still have plenty of laundry to do.
Other than going to my prenatal visits and generally taking care of my health, I feel like I haven’t done enough to prepare for this baby. It’s just been hard to motivate myself to get to the store to buy anything.
After two days of packing, I’m feeling pretty emotionally drained. I’m excited to meet our little guy and welcome him into our lives. I miss Alexander so much and am sad that he isn’t here to be part of his brother’s arrival.
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.