The Glitch

This may prompt more questions than answers, but just as we have a close circle of friends and family walking us through this, we also covet the prayers and support of so many of you that have joined our lives from millions of miles away these past few years.

For some time we have known something isn’t right.  I have not been well.  One doctor appointment has led to one after another, testings, admissions, treatments, questions.  The ever-frustrating battle of insurance and availability of doctors, and whether or not I am considered worthy of their time.

The months have dragged with a great deal of fear.  I have been tormented with a myriad of symptoms, leaving me unsure of my abilities to continue as a wife, a mother, a paramedic.  

My ever-faithful husband has remained my steadfast rock, even as he has been recovering from his own injury and surgery.  He has continued to press forward for me, to search for answers, to do more so I can do less, and to assure me of hope on the days I can’t see through my tears.

We are coming to the end of the questions and the beginning of the answers.  It has taken a long time to confirm.  It has left me weak, with a stutter, in a great deal of pain, dependent on braces, therapy, and medications.  It has brought me to my knees with an unwilling spirit, a failing hope, and yet surrounded by such an amazing group of family and friends that have continued to hold me up when I haven’t had the strength or the will.

 We are hoping and praying for the least-invasive treatments, and for not just management, but for healing.  For days when I can tickle and run and snuggle again without having to think about pain or weakness.  I struggle to believe in healing and in miracles anymore, but I have a steadfast army who believes FOR me.

Please join us in our prayers.  I haven’t handled it with much grace, but I am overwhelmed at the people who have fought for me when I have been too discouraged.

My sweet Baylie said the other day, “it’s ok Mommy, you just have a glitch.”  (if you’ve seen Wreck It Ralph you will understand, if not, you need to rent it now).  It was just a reminder of how my family has never left my side, has accepted me no matter the prognosis, and will stir in me the strength to push on.

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A Strong Word

Some of you understand and some of you do not, the ongoing torrents of pain after losing a child.  So walk with me, and understand my strong word.

As children we are taught about the words we shouldn’t say.  Hate being a big one.  We are told, “ that’s a strong word, don’t you think you should use ‘dislike’ instead? I think you ‘dislike’ the way your friend treats you, you do not hate them.”   So we grow up learning to use the socially appropriate versions of the words we want to say.

The thing about adulthood is you learn there are just some times when no other word will give justice to what you need to express.  Such as when my shin has just met head on with the edge of the coffee table, or what I really think of our dog when he makes a mess, or most poignantly the hot boil I feel when so many things remind me of the heartbroken despair that is never far from my mind.  So I think I have earned the right to use the only word that truly captures what I sometimes feel.

Here is what I hate:

I hate that I have questions.  Questions about if we did the right things.  Questions about what could have changed.

I hate that I stood in a parking lot holding my 5 year old this week because one of Ellie's songs had just played on the radio and we were both bawling too hard to walk inside.  

I hate that it is normal that our family errands sometimes include stopping by to clean a tiny headstone, to change flowers with the changing seasons.

I hate that when I have a call for an infant at work my stomach is in knots the whole way there; that I have to completely detach so that I can focus on what needs to be done without being overwhelmed with the memory of watching my own daughter being worked on.

I hate that every day I work I have to walk through those hospital doors and remember the sights, the smells, that hallway, that room.

I hate that with every joy, there is a pang of sadness because something is missing; that on Mother’s Day I feel such joy and pride coupled with such deep, wrenching emptiness.

I hate that when my kids see me sick, the first thing their panicked minds take them to is, “Mommy, I’m afraid you will die.”

I hate the visions that haunt my mind, the freeze frames of terror that are so easily remembered when the right trigger is there.

I hate seeing Fourth of July decorations appear in the stores, because it reminds me that horrible anniversary is right around the corner.

I hate that I don’t have a better grip on myself, that I haven’t gotten to a place where it doesn’t make me cry anymore, that I am not just living every moment in hopeful expectation until I see her again.

I hate that it hurts.

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Mother's Day

This Mother's Day I have no words... there is joy and there is pain and there is thankfulness and fear, and I can't quite sort them all out right now.  So on this Mother's Day, simply some beautiful faces... some that are here and some that I miss, but all that have called me "Mommy."

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The Dance

Friday, April 26th.  An ordinary day that should not have stood out in my mind.  But somehow it did.  As much as I pushed the thought to the back of my mind , I subconsciously still counted the days.

On a morning that thrilled with the hum of routine, my heart knew it was different. Day 135. One hundred thirty five days of waking up feeling like Christmas as I float in to scoop up the warm snuggly smile that awaits me beneath rosy cheeks and sparkling eyes.  Handfuls of days to smell his sweet skin and feel tiny fingers wrap around mine.  Four and a half months that feel like a lifetime that I cannot imagine any different, but four and a half months to remember what a painfully short amount of time that is.

April 26th, my beautiful Colby Grayson was the same age Ellianna was when we held her as she drew her last breath.  Another morning we had awoken, expecting ordinary.

 Earlier in the week I tried to imagine... two days left... what if I had known?  What would I have done?

While I may have paused to let my lips memorize the feel of her skin, or rocked her through the night instead of putting her in her own bed because I was exhausted, deep down I'm glad I didn't know.  I was present in those days before we lost her, instead of worrying what it would be like without her.  I let myself imagine who she would be, instead of wondering what would be her very last outfit.

 No matter how long the time... days, months, hours, it would have always been too short.  It reminds me of the song "The Dance" by Garth Brooks... "I could have missed the pain, but I'd have had to miss the dance."  I'm glad I spent those four and a half months imagining my lifetime with her, instead of bracing for the reality ahead.

Day 136 I lifted Colby out of his bed and breathed in every memory I could.  I smiled, I cried, and I whispered a prayer of thanks that I got to  hold him in my arms this day...and the next, and the next, and the next.

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