They Don't Know

They say it gets easier. "They" are definitely not other bereaved parents. Other bereaved parents would never dare say anything like that. Luckily for me, "they" are not any of my friends; if "they" once were, "they" would no longer be.

What "they" might say, if they knew what they were talking about was this:

There will be a time when you don't feel the pain every breathing nano-minute. There will be times when you are happy and enjoying yourself. But that will not negate the pain that you will still feel at times. The pain will continue to be (as I have said before) just as intense as the minute you BEGAN TO REALIZE that your son or daughter had died. Not the minute you felt when you were TOLD your child died - because the shock of that moment masked any pain you could and would eventually feel. Not the pain you felt WHEN YOU FINALLY REALIZED that your child died - because you never "finally" realize it. It is something you spend the rest of your life "realizing" because the event is beyond comprehension.



Last Friday night, I went and saw the movie "Extraordinary Measures". It is based on a true story about two kids in the same family who have a rare disease -- a disease with a life expectancy of only 9 or 10 years. Their father gives up his job to create a company for the mad scientist who is researching a miracle drug for those who have this disease. Stimulated by the work of this mad scientist, researchers find a drug that allows children with the disease the ability to continue to live "normal" length lives with fewer of the profoundly debilitating manifestations of the disease. The lives of both of this man's children are extended, and the quality of their lives incredibly improved.

For about 90% of the time that you see this father's two sick kids, they have attached to their throats a tube which helps them breathe.

Initially, I was stunned when I saw the opening shot of them looking like this -- in a wheelchair each with one of these tubes. Of course, it made me think back to Jeff right before he died and how he looked when he was in Strong. Initially I thought of leaving the movie having remembered this. But I decided not to do so and that I could "handle it" without being upset.

The day after the movie, I had a conversation with a good friend of mine whose soon to be ex-husband continues to verbally abuse his daughter, a behavior that this man exhibited towards his wife when they were married. The father now is refusing to allow the daughter to live with him because the daughter has behavior problems. (I wonder why). When my friend was telling me about her situation, I could only think about how incredible it was that he was refusing to let his own daughter live with him, while I would die to have the OPTION -- to choose to do this even -- with Jeff.

Yesterday, while at church, I noticed how incredibly beautiful the "little ones" were as they went up to the alter before being dismissed for the youth program held while the Mass is going on. And we sang as they left the sanctuary "Bless the children". And I thought of my boy.

This morning at work, I was one of 8 people who introduced themselves to the new Director of Emergency Preparedness for the State Health Department. When the second person sitting around the table introduced herself to him, she mentioned her background, that she worked part time, the number of children she had and their ages.

I had to smile. A million years ago, or so it feels, I was at a meeting at a former job when my boss at the time introduced me to a group of people I didn't know. He said my name, then mentioned that I worked part time and was "the mother of two beautiful boys" and noted their ages. Following the meeting, I got into a heated discussion with him (he was also my friend) about how harmful it was for him to introduce me like this because of the prejudice that exists in the workplace towards working mothers of young children AND part time employees.

This morning, while thinking about this past experience of mine, I was stunned when each of my colleagues following this one woman's lead, did what she did. They introduced themselves, summarized their work history, noted the number of kids they had and the age of each of their children. When I went to introduce myself, I of course, did not follow their lead. I mentioned nothing about having children. I felt like someone had just kicked me a million tims.

During the meeting at one point, there was a presentation by a man in charge of emergency preparedness at an area hospital. The EP coordinator had been called upon to help his hospital response to a situation involving a gunman who killed 6 people and shot himself during a shooting spree. In summarizing the various elements of the situation and the hospital's response to it, the presenter mentioned no fewer than a dozen times how trying it was for the hospital to deal with the media who were relentless in attempting to get their stories. [At which point -- I wanted to stand up and scream -- let me tell you MY STORY about the media (when Jeff died). Of course I didn't do this.]

On my way home from work today, I received a call from my older sister. She had just learned that her daughter and her daughter's husband were each asked to join a residency program at a Medical School within an hour of where my sister lives. This would make it possible for them her daughter and son-in-law to remain where they are now living -- which is about 30 minutes from where my sister lives. My sister chatted about how happy she was and how much her daughter wanted to be "close to her mama" so "her mama could still help her" during this time.

After talking to my sister, I called the leader of the local Compassionate Friends chapter. I had been asked to talk there tomorrow night about the annual tournament we hold in Jeff's memory. I got the details about the talk from her then mentioned to her something that had been bothering me.

I have only been to a Compassionate Friends meeting once before - about two years ago. And I hated going to the meeting. The first part of the meeting was so incredibly painful for me. You walk into a large room filled with people each of whom is holding a long table top card with the name of their deceased child and the child's birth day and the day they died. Some of the family members tape pictures of their child to the card.

I can still feel the pain I experienced that moment two years ago when I walked into that room that night.

On the call to the chapter leader, I talked about my attending the upcoming meeting, about how difficult it had been for me that night walking into the room and how I had no intention of writing on the card any information like that were I to attend the chapter meeting tomorrow night. I also told the chapter lead that my child --nor his life -- could fit neatly inside a parenthesis.

I hung up from my conversation with her -- and then I began to feel it.

It was like an explosion. Starting in my toes and creeping up by entire body. I began to be full of rage. By the time I pulled into the driveway my body was completely immersed in it.

I felt rage towards all of the people who sat in the room that night I went to the Compassionate Friends meeting and had the audacity to put their own child's life inside parenthesis and show it off to others. (What kind of a parent would do something like this???) These were not parents I wanted to be with.

I felt rage towards my sister. I could not be happy for her. When I thought of her and her 30 year old daughter who wanted to be close to her I wanted to punch both of them. I wanted to scream about how unfair life it. I felt rage towards me work colleagues who talk about relentless media...rage for the same colleagues who introduce themselves noting the number of children they have and their ages. I felt rage for the families who I saw at church and their small children...rage for the family whose children were cured from the miracle drug found exactly at the right time for them. I felt rage towards the father who has the audacity to choose not to associate with her teenage daughter despite the pain that his daughter is feeling right now. I felt rage towards everyone...rage towards any one...

WHAT DO YOU DO WITH THIS KIND OF RAGE?????????????????????????????????????????????


................................. I went home tonite and changed my clothes ...got Cosby and left in my car quickly. I drove around, then visited the cemetery where I screamed a lot, thought a lot about the last few days and how hard they had been and cried a lot... followed by more crying and screaming. I left, picked up lots of wine, got home and "went into my cave" for the night. Coming out to write this because for me, if I don't get it out, it will slowly kill me.


By the way ...since I haven't yet ...I want to comment about Christmas this year.
Christmas came and went. And there were moments of pure unadulterated pain and there were times that were incredibly wonderful. Some of the former; lots of the later. Many of those good times were with Doug who was a joy to be with...he was so relaxed as was I and at times Doug was incredibly animated, which is unusually for him. Those were moments when I just wanted to simply stop the clock and never turn it back on.