April 8: Things That Needed to Be Said

 

First, let me say that all potential jurors got dismissed this morning at about 11am.  All we did for the two half days we were there was sit in the hallway and talk.  I suppose, if nothing else, it was rather neighborly.  I met four other women and had good conversations with each.  I'm not a great conversationalist, partly because I don't hear well when there is a lot of noise.   The hallway in the courthouse is marble so you can imagine that a conversation of 100 or so folks can be rather overwhelming when you're trying to sort one quietly spoken voice out of all the others but yes, I did carry on conversations.  Not one person I spoke with lived near me.  Three lived on the western side of the county which is about 30 miles from us (we're on the far eastern side) and the third lady lived there in Butler.

All of that though is neither here nor there.  What I wanted to write about was something that we've faced and been hit harder by this year for some unknown reason and that is Danny's death.  Yesterday was the 30th anniversary of Danny dying (which also fell on a Monday).  He was buried on his birthday, the day he would have turned 16.

No one really knew a proper diagnosis for Danny, but it is believed that he had cerebral palsy among many other things.  He was labeled as Mentally Retarded.  Danny had many physical struggles.  He could not speak, he was unable to move his own body, but I fully believe that Danny had full mental acuity.   I honestly believe that Danny could have shared a great deal more than anyone dared believe possible had the eye tracking technology been available to him.  

As it was, he was limited to laughter, screeches and angry sputters to express himself.   He required full hands-on care.  There was nothing he could do for himself.  It was like having an infant.

When I met John, I already had an infant.  John worked all hours, and my time off from my job was a long round of trying to catch up on housework, laundry and doing full time childcare.  I used to look forward to the weekday so I could just go to work!  JD had always been very hands on with Danny's care and I tried to relieve some of that burden off him.  It seemed unfair to me that a 15-year-old boy should spend all of his time changing diapers and feeding his brother.  When John was home, he helped, but he couldn't feed Danny nor give him water because Danny loved to play as though he was gagging, which always scared his dad.

At first, we had Danny every other weekend and occasionally for a week or so while his ex-wife went on vacation.  But in the last year things had been changing.  We'd had Danny more and more, sometimes during the week, sometimes multiples of weekends in a row.  The last two months we had his care 45 days out of 60.   Danny had started to lose weight.  He was sick more often.  We could see he was in pain.  

And we were exhausted.  Not whining, just saying how it was.  I'm fully aware that his mother was exhausted, too.

The day Danny died we'd had him for the weekend.  It was a most excellent weekend.  He was over his latest illness and felt better.  He was happy.   We kept commenting about how great a weekend it was.

On Monday though, it was business as usual.  Everyone back to the proper parent's home, school or work.  John and I were exhausted, and we had a quarrel that morning.  I did the unusual thing and went home for lunch, and we fought tooth and nails while I was home.  I went back to work.  Part of my job at the hospital was to answer the phone while one of the other girls went to lunch.  A call came in from the school that Danny attended saying they needed an ambulance.  I patched the call through to the EMS and remember thinking, "Please God, don't let it be Danny."

When the ambulance came back to the hospital, I was called to the ER.  My family doctor met me in the hallway outside the Emergency room.  I took one look at his face and knew that it absolutely was Danny.  He spoke to me about what the family wishes were regarding protocols.   I told the doctor what the family had discussed.  John arrived at the hospital moments later.  Danny was pronounced dead.

We grieved.  We did.  But at the same time, we knew that Danny had his freedom.  So, it was a mixed box, grief and joy, sadness and gladness.  

Danny was a personality.  He was never forgotten.  Without fail, his name comes up.  Two of my children chose to name their sons Daniel.  We all have our Danny stories we tell, moments that stood out as funny or fun or sweet.

But this year, as I said it hit hard.  John began talking on Sunday about Danny and I sat silent thinking of all those memories but also being hit repeatedly by shame.  Yes, shame.  Because to think of the day Danny died, I also had to remember of that hideous row we had.  To be honest, I don't know what we were fighting about.  I have no clue, truly.  I don't remember what was said or who started it, but I do remember that I went home at lunch especially to fire my volleys of anger at John.  And thirty minutes later, that phone call came into the hospital and Danny, dear Danny, had died. 

Regardless of what we were fighting about, the facts are that we were having a very crappy day as a couple and then the cherry on that day was to find ourselves facing the loss of child.

That shame has been with me for a long time.  I never brought it up but each year, at some point in this second week of April, we'd remember it was the anniversary of Danny's birthday or death, and I'd feel that shame all over again.

Last night I was stressed and weary from being in the courthouse all afternoon and being herded about like cattle from courtroom to hallway, from hallway to another room while the defendant was moved into the courthouse and then back out again, up and down stairs, etc.  And knowing I had to go back today to do it all over again to face the unknown waiting, moving, etc. was weighing heavily upon me.  

John on the other hand, had spent a very rainy, dreary day in a dark home alone, thinking of Danny.  Eventually he talked about him, and I sat silent next to him, saying nothing, but thinking, "My word, I wish I'd not fought with him that morning!" and of course, being certain the whole while, that it was also in his mind, and he was too polite to bring it up.

John went to bed with something as near a sob as he's given in all these years as he prayed about Danny and his loss, and I remained silent but felt so distant and emotionally withdrawn that I might as well never have known John at all in this lifetime.  I slept poorly last night.  I was up very early this morning, since I had to leave early.  I was sitting in the dark drinking a cup of coffee when John came out of our room.  When he sat down with his coffee, I told him how I felt about Danny.  How much I had enjoyed that time in my life, how hard it had been, how I loved hearing the kids' memories of Danny.  And how I myself had for years carried this sense of guilt/shame over my behavior the morning he died.

And John said, "What fight?  I don't even remember us fighting..."  I laughed and sobbed together and said, "Of course you don't.  But we did.  And I can't tell you what we were fighting about or who started it or anything, but I do recall that I was angry, and I went home specifically to continue the fight we'd been having that morning before I left for work, and I just need to say how sorry I am for that."  He said, "Ok...Thank you.  But I really don't remember it.  I just remember the moment the call came that I needed to go into work, and thinking, 'Please don't let it be Danny.'" 

And there we are.  For thirty years, I have carried a burden that I never should have picked up, but we do that anyway, don't we? 

It's time to change another pattern.  In all the years, we never really celebrated Danny's birthday.  We'd buy him gifts but we seldom had him on his birthday and we didn't tend to feed him cake, etc.  But why not change that now?  Why not change this pattern of grief?

When I came home today, I told John, "Let's do this right.  Let's celebrate Danny's life and his freedom."  We had a special meal in remembrance of him.  I think this is something we should do each year, if we do nothing more than choose a moment to share our funny Danny stories or recall moments when Danny stretched us and grew us into better parents and people.

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