the story

I keep wanting to write the story.  The one about Hobbs’s heart surgery and all the challenges and the scary things we did to get through it. Why isn’t this easier?  I cried for about a week when we got home.  That first week was horrible.  I know that sounds depressing but that’s because it was.  There’s nothing quite like watching your child suffer and not being able to do much of anything.  Usually, I’d take him up into my arms and wrap him around my chest.  There he found comfort and quiet.  It was our sanctuary.  But because of what happened during his surgery I was told I was no longer able to provide such nourishment.  During Hobbs’s surgery, some part of the heart was aggravated microscopicly, and this was causing fluid around his heart while he tries to digest fat. Fluid around the heart is apparently no bueno.   Thus a restricted diet of 5 grams of fat a day and a 900 caloric intake diet  made our departure from the Hospital a happy and confusing time. Think about this, one piece of bread had more than half of his daily fat allowance. But still when we left there with Hobbs in the back seat, ALIVE,  we thought we were outta’ the woods.

2013-08-28 13.46.57
My baby is under all the tubes
2013-08-29 06.53.12
This is love

What we found though, was that we were closer to the trees than we thought.  We couldn’t see the forest.  It was thick.    I became public enemy #1.  I was no longer complying with the usual routine, i.e nursing on demand.  Whenever I’d get close to him, try to pick him up, console him in some other way aside from the usual comfort, he’d scream and kick and bat at me.  I know it wasn’t personal yet it felt  bone crushingly personal. To be fair, he kinda hated me.   I was Hobbs’s favorite person up until that point.  Now, he calmed and slept better with his Dad.  Preferred him even. I was crushed.  There were hours coupled together with other hours where all  he would do was scream and cry.  And sometimes all we could do was lie next to him, staring. Trying any number of magic spells to put him under.   No lullaby or light up toy or snack would distract him from the pain he was in.  Thrush covered his bottom and lined his mouth and throat.  Recovering from a broken sternum while also having Thrush is pretty much God-awful.  It took two of us to transport him because you can’t lift from under the arms and his bottom was too sore to handle.  Kid was miserable.  We’d try Potion #1: This much ibuprofen at this time mixed with this many blankets and that toy, no, he doesn’t like that toy any more, this toy and that curtain shut, no open, and this song playing….  Potion #2: This song playing add Tylenol, change rooms, add a new toy and so forth…It went on and on.   And what worked before wouldn’t necessarily work the next time.  Just a constant guessing game.   Taking shifts and forgetting to shower.  A few times we thought we were on the up and up only to find ourselves back at the pharmacy.  I about resigned.

You heard me, I QUIT!  I really, really, really, felt like quitting.  Like, Uncle!  Me, keeled over on the floor barely able to quiver my little white shred of a flag, surrender.   I cried innumerable tears.  Wrote desperate text messages, called folks only to cry some more and not really talk at all.  I was pushed as far up to the breaking point as possible.  I had hit my limit.  And what happens when one is brought to that point of no return?  There is a death.  But, where there is death there is new life.   And so, I died.  All those ideas I had about being the only one that could soothe and nurture Hobbs were shot down by watching my tender-hearted Husband gently sing to and patiently rub Hobbs’s crying swollen face.  I watched as Eric stayed up all night keeping watch ready to place a strategic hand in the right place at the right time.  He really knew what Hobbs needed.  I felt about as equipped as a Mother as I would if I were changing tires at Les Schwab.   I felt disconnected and powerless.  Two great indications that something amazing is about to happen.  I had expected when we brought Hobbs home that we’d have our boy back, meaning: joyful, agreeable, content and mellow.  I remember thinking I should’ve been more specific in my prayers, I should’ve clarified, “Let us leave the hospital with Hobbs, exactly if not better than the way we brought him in.  I remember thinking we should return him there because from what I could tell he was nowhere near ‘fixed.’

FEAR.  This life sucking, fire starting feeling ruins days, weeks, years and entire lifetimes.  It can generally be put into these two fields: fear of not getting what I want and/or losing what I have.  I was afraid our life was going to be heavy from now on.  That it was always going to be tainted by the fact that Hobbs was sick and needed more attention, more medicine, more hospital visits,  just more.   And I was afraid I didn’t have anymore to give.  That I wasn’t enough.  My prayers in those last days were really just tirades, angry self loathing coupled with tears and guilt for feeling like running to the bathroom every 20 minutes to hide.  Thank God I learned a long time ago that feelings aren’t facts.  They are indicators like blinking lights on your car suggesting where to go, lighting up the areas that need work and healing. My blinking lights pointed me to trusting God, by surrendering my will.  Giving up the idea that God needed me to be superhuman.  He made me plain ol’ human for some reason or another.

Begrudgingly I sat down the next morning to read and listen and pray.  I did it again the next day and the day after that and well I’m on a day to every other day routine of plugging in.  I kinda hated the fact that it was so simple.  Frustrating that generally it is simple action that consequently gets me the big results I’m so desperate for.  But here’s the point:I didn’t quit.  I wanted to and I didn’t.   And unlike many of the feelings I was experiencing these are the facts.  I stayed.   I am growing up.  “Maturity is not feeling anymore, maturity is staying present to the feelings.”  -Rachel   Thank God for girlfriends who feel like sisters who talk for God in a human voice.  I heard my God in that moment say, ” You’re ok, Mery.  Everything that you’ve been feeling and thinking and doing is ok.  You could’ve chosen anything else but you chose Me.   You cried out and I heard you.  I was sad with you.  And now we’re here in this moment and I’m telling you, you are ok.”  Done.  Done dying.  Done beating myself up.  Done with guilt (for now) wishing I would’ve done this or said that.  Done buying into the lie that it needs to look like THIS in order to be good, right, spiritual and above all, mature.  I’m letting me be me.  Human.  Just like you.  I’m letting God be God.  I’m letting crappy things be crappy things, I won’t polish them off before presenting my case.  Everything has permission to be what it is when it is.  The Good God will finish the rest…

One more thing:  Today Hobbs is doing really well.  Recovery is a process.  And we’re in it.  He’s slowly returning to therapy through our beloved Guild School.  He’s started to have longer and longer bouts of energy where he really wants to just roll around and be one of the guys.  His little feet were fitted for braces that are helping him to build muscle and make muscle memory for walking purposes and weight-bearing.  We’re due for a check up in about 4 weeks to look into the fluid around his heart so keep praying.  And just so we’re clear, you can pray to your god, it doesn’t have to look and sound like mine.  Hobbs has one of the more resilient spirits I’ve ever known.  Who bounces back from heart surgery looking like this?

Back to rockn' and rolln'
Back to rockn’ and rolln’

If I could I would hug every one of you for reading along.  Really, I would.  Wrap those limbs around yourself and squeeze one out for me.   And a big wet kiss to my Husband Eric who I really really really couldn’t have done this without.  I would’ve folded completely had it not been for his strength and love, I love you so much honey. Planning my next post on the amazing walk we did this past weekend, Step Up For Down Syndrome.  Cuteness overload… you’ve been warned.

5 thoughts on “the story

  1. Oh, Mery, I cry every time I read your messages. You move and inspire and shame me with your amazing faith, love, courage, honesty and endurance. I’d like to be like you when I grow up. Hobbs is such a gift to us all to see where we need to grow and accept life on its terms. Thank you for including me in your life and your story. I love you! Sandy

    Sent from my iPhone


  2. Mer Bear

    I cried reading this. how precious Hobbs is and how precious you and your little family is. Hobbs is the luckiest, most blessed kid in the world to have parents like you two! I only wish I lived closer to help, support and love on you all. Hobbs and your fam are in my prayers, and I mean it when I say that, im not just saying it to say it. Love you Mer Bear, you are such an inspiration

    1. Neum!
      I know you mean what you say. Always been a strong character trait of yours my friend. Thank you for loving and supporting us from where you are- your notes are hugs via the internet. Feel the love all the same. Wrap your arms around tight and squeeze out a Mer-Bear hug. Love you!

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