Tag Archives: loss of child

Starting to pack

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.

Still no answers…

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.

Another birthday has come and gone

Since Alexander passed, the first week of May has been difficult for me. This year was no different. Alexander’s 4th birthday was May 3 followed quickly by Mother’s Day a few days later.

I didn’t want to see or talk to anyone on Alexander’s birthday so spent the day alone in quiet reflection looking at his pictures and videos. When Dan got home from work, we went to the cemetery and released 4 balloons.

On Mother’s Day, Dan and I visited a local sculpture park. We had a nice lunch and walk through the park while talking about Alexander and life. It was a little hard to see the park full of families with their young children but I’m glad we went.

I recently bought myself a charm necklace.  The sterling silver charm includes Alexander’s name below a raised heart.  I love it and wear it almost every day.  I find myself rubbing it constantly throughout the day whenever I think about Alexander.

I wish he was here now to give me a big hug.

Review has begun

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.

2 years

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 new term

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.

One of those people

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.