I'll settle for the firefly

This sums up Ty lately.  He just hasn't been very happy and it's tearing Lou and I to pieces.  He is having head pain again, but Lou and I wonder if sometimes his crying is driven more by his overall sadness and less from actual pain.  It can be hard to differentiate his feelings because he's so young.  Then there are times where he cries and clearly says "I just sad!  I just sad!"  So young, yet sometimes so much older than a four year old should ever have to feel. 

We had a tough weekend because we were all so depressed.  Thank God for Saturday night.  Our wonderful neighbors had a huge party all day and into the night.  We tried to get Ty out of the house all afternoon to stop by the party, but he just refused.  He was sad and whiny leaving Lou and I on edge all day.  It's such a horrible feeling, to carry around that weight all day - dragging our feet, snapping easily, every whine from across the room sounds like nails on a chalkboard.  Then my in-laws came over, we put the boys to sleep, and we decided to go to the party just me and Lou.  Whew!  A night out, alone, surrounded by grown-ups, great food, drinks and poolside jell-o shots :)  It was fun.  We were able to relax for a couple of hours.  We smiled, laughed, we had a great time.  That night out will keep us going for a while now.  It gave us some much needed respite that we can hold onto for days. 

Yesterday our friends came over with their three girls.  Gavin was so excited to have friends over, he was really adorable.  They had a great time playing together.  Ty, on the other hand, wasn't as excited about sharing my time with them.  Especially not sharing me with the baby.  Their littlest girl is only four months old and holding her was like holding a little piece of heaven.  She was 100% edible.  I want more babies of my own so badly, but yesterday just reinforced why that isn't in the cards for us.  Ty needs more attention than an infant.  He can't feed himself, he can't go to the bathroom, he can't roll over in bed or hold his head/body up to sit.  We're tending to him constantly and it wouldn't be fair to introduce more "need" right  now. 

Maybe you will relate to this, maybe you won't; but when Ty was born I used to have terrible thoughts about something bad happening to him.  If I was holding him near our glass coffee table, I imagined dropping him into the glass (we replaced the table with an ottoman).  If he was sleeping, I imagined he wasn't breathing.  If I was taking him for a walk, I would play out the scene of what I would do if a rabid dog ran up to the stroller out of the bushes.  Is that crazy?  I grew out of it over time.  I finally learned to let go of his hand and he climbed up the slide.  I let him run <eek!> on the boardwalk, even though I was wincing internally at the thought of him tripping.  Today, I live with even greater worries.  Today, I worry every single time I approach his sleeping body that maybe he is dead.  Lou and I talked about this, and he has the same sick thoughts all the time.  This morning we talked about how defeated we feel lately.  We can't bear to see Ty so sad and so disabled.  We feel like we are giving up, and we don't want to!  Ever!  After a few difficult days we both just want to sit back and scream at the sky, "bring it on... however this story is going to end... happy or sad... please just bring it... because we can't stand living in limbo anymore."

Which brings me to the firefly.  Last night, while Lou was in bed with Ty, I heard Ty scream out three of four times while I was cleaning up and doing the dishes downstairs.  I dropped a glass, abandoned the rest of the dishes, stepped outside into my backyard and broke down.  I cried to the sky.  I searched the stars hoping to see one streak across the sky - something to reinvigorate my hope.  I was praying for Ty's healing... begging... like always.  I calmed down after a few minutes because I eventually become content knowing this is out of my hands, but I lingered on the patio for a while before going in to bed.  Instead of a shooting star, a firefly soared across, way up high in the sky.  It was pretty.  I felt better.  I'll settle for the firefly for now.  One foot in front of the other. Tomorrow is a new day.

MRI Wednesday.  The next few days will be riddled with anxiety.  As you can already tell.  Thank you for your love and support.