breath of fresh air

Thursday, February 25

I've been out of the game for quite some time, that's not news to anyone.  The truth is I couldn't do it. After having Auni, life was a complete and utter whirlwind and there were far more important things to fill my time.  It took every ounce of energy I had to keep up with the care of a newborn, a heavy load of school work, daily practicum hours, let alone the endless list of regular daily tasks and responsibilities. Little did I know that the load I was bearing at that moment, was nothing compared to the very dark storm heading our way.  On July 18th, 2014, the life we had envisioned and dreamed of was ripped out from under us.  We fell. Hard.  Our perfect Auni girl was diagnosed with a rare genetic disease known as Spinal Muscular Atrophy type 1.  We were told there was no treatment or cure for this horrid disease and that it was going to take our daughter's life, and soon.  We were told most children with type 1 don't live to see their second birthday.  Our lives started spiraling out of control.  How do we tell people?  How are we suppose to act?  What is this disease?  What is it going to do to our daughter?  How can we help her?  Are we cut out for this?  How do we make sure our daughter feels safe and loved?  How are we suppose to make life-sustaining care decisions for our 7 month old?  What are these machines?  How do we use them?  Do we really have to keep watching her as she screams out of agony and fear?  Is this how it's always going to be?  We were drowning.  The most excruciating part was that it was happening privately. How are you suppose to go out in public and hide the fact that you are kicking with every ounce of strength you have left, fighting to reach the surface to get a gulp of air?  It's simple, because you have no other choice.  Sometimes it's easier to lie to yourself and to everyone around you instead of crashing to the floor in agony, trying to stay afloat in a lake of your own tears in some public setting.  

These days were dark, they were suffocating, and most of all, they were lonely.  I felt so completely and utterly alone.  No one understood.  No one could help.  The situation wasn't going away and it wasn't going to get any better.  "You need to fight for her."  My view shifted ever so slightly.  I needed to fight for her because she couldn't fight for herself.  No matter what it took, no matter the lengths I had to go, I needed to do everything in my power to take care of my perfect girl.  Our circumstance wasn't in our control, but how we reacted to it was.  As long as our Auni girl knew she was loved and she felt safe, that's all that mattered.  She was the most important thing and highest priority in our lives.  We were introduced to what seemed like an endless amount of machines and treatment techniques that we needed to use on a daily basis.  Each carrying an overwhelming load of stress and uncertainty. That overwhelming uncertainty slowly faded as time passed.  Each slowly morphing into what we now called our "new normal".  Each becoming a part of our regular daily routine.  As Auni got used to them, so did we.  The fog started to lift and the light started sneaking back in.  The gloomy cloud of her diagnosis and the uncertainty of our future was always present and lingering near by but it wasn't preventing us from soaking up the sun today.  We knew how fragile life was as we continued to watch Auni's disease rob almost everything from her.  It was unbearable to watch her body continue to fail her right before our eyes.  Through the steady stream of tears, we couldn't help but marvel at her resilience and determination to push forward.  Seeming to be completely unaffected by the hardships encompassing her.  She chose happiness.  She chose to smile.  Her grateful heart came beaming out through her beautiful brown eyes.  She seemed as if she had everything she had ever wanted.  Because of that, so did we.  She was our everything.  

The day shortly came when we were forced to say goodbye to our sweet girl.  Every single excruciating detail of that day will be forever engrained in my brain.  I couldn't stand the thought of having to continue to live my life without my daughter.  It seemed so unnatural and extremely unfair.  How could this be happening?  How could this be right?  This was the moment when I placed my entire life, my everything, in Heavenly Father's hands.  I knew he loved Auni just as much as I did and could take so much better care of her.  Her fragile and broken little body wouldn't have to confine her remarkable spirit any longer.  She would be free.  She would be safe.  She would be loved.  I trust 100% that she is where she needs to be.  Although I miss her every waking minute of every single day, I know she left his Earth so she could do far more important things.  She is so unbelievably special and I am so incredibly eager to have the chance to continue raising her.  I cannot believe such a valiant spirit was in our care to rear, and I hope Heavenly Father knows just how grateful we are to be parents to such an amazing girl.  Our Auni girl is truly one of a kind and we cannot wait for the day when we can reunite with her.  When I can hold her in my arms again and never have to let go.  It is that sweet image, that makes every single thing worth it.


  1. Writing can be such great therapy. Glad you're able to get some thoughts down. Thinking of you guys all the time. I know sweet Auni and Finley are flying free, hopefully getting into a little mischief and mostly not being confined by their little bodies anymore. Love you~

  2. You have me in tears. This is so beautiful.

  3. This is the most beautiful post. I was in tears the entire time. What an amazing mother you are! I've been secretly following your story for quite some time. Your little girl is absolutely gorgeous. Families can be together forever.
    Do you mind if I share this post?

    1. Thank you so much! You're kind words mean more than you know! Of course you can share!


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