Preparations, Fear of Joy & The Community of Brokenness

I can’t tell if the clock is ticking faster or if we’re at a standstill.  It seems our lives are on hold but the world keeps spinning.  The days are slow but the months go by really fast.  Three months since Christmas, one month since Joey’s birthday and a week since my mom left.  I prayed for another Christmas, then for another birthday and after almost losing our son, I prayed for one more visit with my mom.  My prayers were answered, we got a little while longer.

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Mid-February (I think, I can’t even remember any more), Joey had a couple massive seizures.  Per his neurologist’s orders I had administered the emergency medication around lunch-time one day as he kept having what one would call cluster seizures – they were small and didn’t last long, but as soon as he’d come out of one he’d go right into another.  The afternoon was peaceful and we thought he was doing better, but when I went to turn him later that night his body was completely rigid, his heart rate at 195 and he was in respiratory distress.  Another round of emergency medication, dilaudid to get his heart rate down and Tylenol in the event he was coming down with a fever (fevers can trigger bad seizures, something we learned the hard way).  Ten, maybe fifteen minutes later, with no signs of improvement Sam and I both looked at each other, we had been thru bad seizures before, but this was different, this was the beginning of the end, or so we thought.  Jonathan David Helser’s song “Endless Ocean” was playing in the background.  Although I had heard it many times before, the first verse and chorus sent chills up and down my spine.

“In the beginning you were singing
In the end you’ll be singing over me
In this moment you’re right beside me
You’re everywhere, you’re in the air that I breathe

You are an endless ocean, a bottomless sea.”

We held him, because there is nothing else you can do in those moments.

Be still and know, be still and know, be still and know….was all I could think of.

Praying he’d sense our presence, feel our love and our arms wrapped around his little body.  Praying it would end.

It did end.  Thirty minutes later he stopped seizing, his heart rate improved and he was breathing easier.  Not quite sure what to expect next I asked Sam to hold him for a little while.  I needed to lay down, needed to just breathe.  A few hours went by and eventually we all fell asleep. The following night we had to go through the same thing again.  Same seizure monster, same medications, same outcome.

We all recovered.  Joey a little weaker, Sam and I a little more fatigued, yet we recovered.  It wasn’t until a few weeks later I noticed something felt different.  There’s the obvious relief but there was also confusion and guilt.  I remember telling my friend -“my son is terminally ill; some days his suffering is too much to bear; he almost died; but now it seems he’s doing better again – how am I supposed to feel about all of this??”

With tear-filled eyes she looked at me and said, “I know, I’ve been wondering the same thing.”

It takes strength, courage and ruthless trust to prepare for the death of your child; thinking it is over and realize you have a little while longer and then allowing yourself to enjoy, not just endure a little while longer.  Trusting it will be ok, trusting that allowing joy back into your life is not going to make the pain any worse or more unbearable.  As if one is competing with the other.

“Well of course”, you might say, but I’m telling you, grief has a way of clouding your vision and your thinking.  A grief therapist I met at the NTSAD conference last week said that loosing a child and having to watch them suffer for an extended period of time is comparable to having your soul raped over and over again.  It’s major trauma.  Her words resonated with me.

It wasn’t until attending the aforementioned conference and being invited into other parents’ suffering that I was reminded of the coexistence of joy and pain.  Listening to the stories – newly bereaved, newly diagnosed and the perspectives of people who have been traveling this road for many years rekindled hope and joy in my heart.

The community of brokenness offers an acceptance I don’t think I’ve ever experienced before.  When you’re cracked open and your heart is exposed in the rawest of ways, there’s no room for personal agendas, judgement or belittling.  Our differences don’t matter.  There is no masking of suffering and there’s no hiding or protecting from it.  When the world tells you, “don’t bring your suffering to me,” the community of brokenness says, “please, you’re welcome here.”  Their suffering doesn’t overwhelm me and mine doesn’t overwhelm them.  It’s a beautiful thing.

It’s an honor to know these children and their families and it’s an honor to share Joey and his journey.

It’s an honor and joy to have a little while longer with our little warrior boy.


2 thoughts on “Preparations, Fear of Joy & The Community of Brokenness

  1. Sarah you never cease to amaze me with your beautiful, thoughtful expressions. I am so happy to hear that the conference was helpful. We missed seeing you but enjoyed seeing Sam and spending some time with Joey. Leila really seemed to have a way with him and seemed to bring him some peace. It was beautiful to watch. Be well my love and know we are always thinking of you all.

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