Tag Archives: sudden unexplained death

In our continuing quest to try to find answers about Alexander’s loss, we’re going to participate in a second study.  The second study is through the Sudden Death Genomics Laboratory at the Mayo Clinic.  Dr. Ackerman and his staff research several heritable cardiovascular diseases.  The Long QT Syndrome the clinic conducts is one of the studies mentioned in our SUDC binder.  While Alexander’s autopsy report didn’t show anything wrong with his heart, we want to explore every possibility to find answers.

As part of our possible participation, the clinic wants us both to have an EKG done.  I had my done yesterday.  Why is nothing ever simple?  I had another appointment prior to the EKG appointment.  Because the first appointment ran late, I arrived at my doctor’s appointment late. When I arrived at the doc’s office, the receptionist told me I was late so I missed my appointment.  She said I could wait but the next opening wasn’t for another hour.

Yes, I was late, but my visit would have taken 5, 10 minutes top and as I looked around the empty waiting room, I just couldn’t believe she was telling me I had to wait an hour.  Was the office scheduling so tight that it didn’t allow for someone being late.

This just compounded the bad day I was already having so I decided to run errands for an hour rather than wait.  To ensure I didn’t miss another appointment, I arrived 10 minutes early.  At 10 minutes past my appointment time, I wondered if I should go to the desk and tell them since the doctor was late for my appointment, I was leaving.  Just then they call me back.

As I waiting for the doctor to enter the room, I started to tear up thinking about why I was there.  I don’t visit the primary care doc often except for the occasional times I’ve gotten a flu shot or have had need for antibiotics.  As I was explaining to him why I needed the EKG, I broke down and could barely talk through my tears.

The doc said the EKG was fine aside from a small spot that you may see at some times but not others.  I had some problems with increased heart rate in the past but the cardiologist didn’t seem to think it was of concern.  We’ll see if they notice anything at the Mayo Clinic.  Now, I just need to get Dan to get his EKG done so I can complete our file.

Lately, I’m finding with every new person I have to share our story, it feels just as if it happened yesterday with all the same very raw emotions.  The same searing pain through my heart.

I’m missing Alexander so much.

Alexander’s Run Update

Dan has mapped out a potential route and is going to walk it with a couple of friends tomorrow.

I was attending a recruiting session for one of my volunteer organizations last night.  We’re hosting several of these meetings over the next couple of weeks.  At the time, there were four women in the room so we’re all part of the same conversation which eventually turned to children.

Since the other two women had spoken of their children, I knew the prospective new member would ask me the unavoidable question: Do you have any children?  While the others were chatting, I was going back and forth in my mind what I would say.  Sensing the unavoidable questions was about to happen, I got up to refill my glass.  Just as I did, she asked.   In the seconds it took me to turn around, I heard the word “no” tumble from my lips.

I felt like I was betraying Alexander by saying no but I just didn’t have the strength for “the look” that would happen if I told her my story.  I know I shouldn’t feel badly.  In my heart, Alexander is and always will be my child.  However, I’m still struggling with my response today.

How can time be moving forward and standing still at the same time? Today, makes 9 months that I’ve had to live without Alexander.

We were at the home of friends last night.  At one point, Dan and I were the only adults in the living room while the other couples were touring the house and their children were running around.  Dan looked at me and said, “Alexander would be talking now”. He’s right.

When I see 2 year olds, I often wonder what milestones Alexander would be achieving now.  How many words would he know?  How would he be doing with potty training?

Dan is playing in a tennis tournament today.  He played in this same tournament last year and Alexander and I were there to cheer him on. Dan’s team didn’t make it to the finals but we went to the finals and family celebration later in the afternoon.

Alexander was fascinated by a golf cart around the corner from our table and would go running to it every time we looked away from him. We were sitting with another couple and their daughter.  She got quite a workout running to get Alexander every time he got away from us.  He really enjoyed the game they were playing.

It was a happy day and it makes me too sad to attend the event without him.  So, I won’t be going this afternoon.

Our house was taped for a show on HGTV 2 years ago and the episode was aired today.  Alexander was part of the taping.  I didn’t have the strength to watch it today.  I did save to the DVR so hopefully, I’ll be able to watch it sometime in the near future.

I’m feeling sad, lost and out of sorts.  I so wish Alexander was here.

Another SUDC mom posted this and I thought it was a good thing to share.

Following are excerpts from an article by Vicki Windham of the North Platte, Nebraska, Chapter of Compassionate Friends.  I changed a few things to reflect my normal.

Normal for me is trying to decide what to take to the cemetery for Christmas, Alexander’s birthday, Valentine’s Day, Easter, etc.

Normal is sitting at the computer crying, sharing how I feel with chat buddies who have also lost a child.

Normal is having tears waiting behind every smile when I realize Alexander is missing from all the important events in my life.

Normal is not sleeping well because a thousand what if’s and why didn’t I’s go through my head constantly.

Normal is turning the TV on the minute I walk into the house to have noise because the silence is deafening.

Normal is every happy event in my life always being backed up with sadness lurking close behind because of the hole in my heart.

Normal is telling the story of Alexander’s passing as if it were an everyday common place activity and then gasping in horror at how awful it sounds. And yet realizing it has become part of our normal.

Normal is coming up with how to honor Alexander’s memory and birthday and survive those days.

Normal is a new friendship with another grieving mother and crying over our children and our new lives.

Normal is being too tired to care if I paid the bills, cleaned house, did laundry, or if there is any food in the house.

Normal is hiding all the things that have become normal for me to feel, so that everyone around me will think that I am “normal”.

Can it really be 8 months since Alexander passed?

I’ve made some progress in my grief journey but there are still many days that I struggle to get out of bed or find energy to get through the day.  I will always be just a bit sad without Alexander but am beginning to remember our times together without crying quite so much.

The postman delievered a package today.  He’s not the guy who delivers our regular mail just Priority Mail or Overnight packages.  When he handed me the box he asked about Alexander.  ‘Where’s the baby?  He must be getting big and running around now. I haven’t seen you walking with him in a while.’  So, I had to tell him the sad news.  Just goes to show you never know who’s watching you.

The day wasn’t all sad.  I needed to get out the house so I went to get my hair done.  I went to the mall across the bridge since it’s not a place Alexander and I went often.  Since this was the first time I’d been at this salon, I expected the usual get to you know you questions from the hair stylist: are you married, have any children, etc.

I braced myself and when she asked, it was actually an easy exchange.  I told her yes I was married and that our son passed away in December.  She expressed her sympathy and apologized for asking.  She surprised me when she began to ask questions (how old? was he sick?).  I was further surprised when I answered her questions without crying.  We chatted about Alexander and I shared the bookmark from the funeral service.  She read every word.  Being a hair stylist, one of the first things she noted about Alexander was the hair.  Everyone loves his hair.  Our interaction could have gone much differently and I really appreciate the kindness she showed me today.

I miss Alexander and wish he was here with me.

I hosted a meeting at our house on Tuesday night.  Again, it was one of those bittersweet things.  I’m on the board of a local woman’s organization and we rotate hosting the meeting at a different board member’s home.  Last year, I hosted this same first board meeting of the year at our house while Dan took Alexander to the National Night Out activities in our neighborhood.  As I was preparing for the meeting, I kept thinking about how this was going to be yet another experience I wouldn’t have with Alexander.

I prepared the same meal as I did last year.  I tried to tell myself I was looking for the quickest recipes and that I wasn’t conscioulsy choosing the same dishes, but it didn’t work.  The hardest part of the night for me was having to remove Alexander’s booster seat from the table.  We have 10 dining room chairs for our table and 10 people were attending the meeting.  Now that I’ve moved it, do I return his seat to the table?

I wasn’t prepared for the reaction of one of the board members attending the meeting.  When she came in, she looked a little flustered so I asked what was wrong.  She said it was the first time she’d been there since Alexander.  Surprisingly, I didn’t get sad but I was touched.

I don’t know why but Monday was a really tough day.  There wasn’t any particular trigger but I spent most of the day in tears.  I miss Alexander every minute of every day but I really missed him this week.

At one point, I forced myself to go out for a couple of hours.  The only errand I had to run was to go grocery shopping.   That would only take me about an hour rountrip so I decided to also take myself out for lunch.

I went to a restaurant close to the grocery that Alexander and I used to frequent.  When the hostess first took me into the dining room, we headed for a table full of moms and their babies/toddlers out for lunch.  This wasn’t going to work for me.  I was prepared to ask to be seated elsewhere but the hostess decided on her own to find me another table.  Unfortunately, she took me to the table that Alexander and I had sat at the last time we were there.  The tears were welling up in me and I couldn’t tell her this wasn’t going to work for me.  If I had opened my mouth, I would have completely broken down.  I sat down, shed a few tears and then took out the book I brought along to distract me.  The book did help because it allowed me to focus on something else.

Medical Examiner’s Office

As I’ve mentioned before, Dan and I have decided to participate in the SUDC study.  As I headed out this morning, I was consumed by the thought what if the medical examiner’s office destroys Alexander’s tissue and blood before Dr. Krous’ office has a chance to contact them.  So, I had to call the office to find out how long they preserve blood and tissue samples from an autopsy.  The receptionist told me 7 years.

I felt relief that they preserved the samples so long but I was also a little sad to think that the M.E.’s office will preserve Alexander’s tissue longer than he was with us.  No parent should have to worry about a thing like this.

Speaking of which, we preserved Alexander’s cord blood with Viacord right after he was born.  Our pain was still so new and fresh for us this year that when it came time to pay the annual storage fee, I just let the time expire to make a change to our account and my credit card was automatically charged for the fee.  I did call the Viacord folks who told me I had 3 choices: pay the annual storage fee, donate his cord blood to scientific research, or authorize them to destry.  How does a parent make this decision to destroy this link to their child?

Skype

I had my first Skype video call last night. (If you’ve never done it before, I would highly recommend it.) I was talking to another SUDC mom. I think it was helpful for both of us to see and hear each and not just “talk” via email.

Facebook

I’ve been reconnecting with a lot of high school and other friends on Facebook lately.  If it’s someone I haven’t talked with in a long while, I like to send an email to catch up on things.  One question I keep asking myself lately is whether or not I mention Alexander’s loss in that first email.  I have several pictures of him on my Facebook page and if you didn’t know about our loss, you would assume I have a happy, healthy toddler in my life. Rather than one of these long lost friends ask about Alexander and then feel uncomfortable for having asked, I’ve decided that I will share the information.  Alexander’s loss is a part of my life and who I am now.  It’s not something I want to talk about but feel I must.

I’m seeing my therapist tomorrow and I’ll think we’ll have lots to talk about this week.

Seven months ago yesterday, we lost Alexander.  It was a long, slow day for me.

We met a couple of friends for bowling last night.  I’m a lousy bowler but it was good to be out for a little while.  While we were bowling, I kept thinking about the night Dan was trying to teach Alexander to bowl with the plastic set Dan’s mother had recently given him.  Alexander didn’t quite get it that first night and unfortunately, we never had another chance to try.

I stayed in bed a little later this morning.  I have plenty to do today but just couldn’t bear getting up to an empty house.  As I lay in bed, I listened to the city noises outside but the quiet of our house rang louder in my ears.

I’ve heard from other parents who have lost children that the pain and sadness does eventually become more manageable.  From where I sit today, typing through my tears, I just don’t see how.

A few weeks ago, a neighbor shared a wonderful story with us.  She saw a group of about 15 kids walking past the tot lot.  She said as each child walked by, they put their hands on Alexander’s photo and said ‘I love you baby’.  The story made me cry when I first heard it and I’m sobbing now as I write this.  How wonderful to think these children who never met Alexander would be so kind.  This same neighbor told me that she sees people stopping and looking at Alexander’s photo often.

We had a bit of good news yesterday.  A bill was introduced that seeks to help reduce the occurrence of Stillbirths, Sudden Unexpected Infant Death and Sudden Unexpected Death in Childhood.  This will be done through increased research, awareness and education.  Here is a link to the press release on Sen. Frank Lautenberg’s website: http://lautenberg.senate.gov/newsroom/record.cfm?id=315708& .

I would encourage everyone to contact your senators and representatives to tell them you support this bill.

If the bill passes, the data collected could help prevent other families from knowing the loss and suffering we’ve lived with for almost 7 months and possibly help our family and others like us find some answers.

I’ve really been trying to keep myself busy everyday so I don’t focus on the big hole in my heart.  Try as I might, it’s never enough to keep me from breaking down several times a day and having a good cry.  I miss Alexander so much.