I was an ordinary girl, I grew up, got married, moved to small town Oklahoma.
I was blessed to have two beautiful little girls. My oldest was healthy and strong.
My youngest, was anything but. My little one was a fighter from her very first breath.
She had to work extremely hard for that breath, and everyone that followed. She was born almost 3 months early. She was diagnosed with a laundry list of problems. She had Angelman Syndrome, Chiari, Ehlers Danlos, Spina Bifida, Epilepsy, Cortical Visual Impairments, Periventricular leukomalacia, and had 3 holes in her heart.
My oldest took to her role as big sister amazingly, she was the best friend, and biggest fan of her sister. Even though life for my oldest baby would never be the same, and would never be fair, and slighted her at every turn, you wouldn’t know it by looking at her. She had the patience of a saint, and the resilience to match.
We were flooded with a list of things my baby would never do, she was termed not compatible with life. What a horrible term that was.
Well one by one she marked those things off her list of things she would never do! My two girls weathered this storm with grace and humor.
There were many surgeries, and pain and sleepless nights, and slowly I got over the grief of what I thought my family would look like, and my heart healed, stronger for it.
At age 6 for my youngest, we thought things may just be ok after all. Until April that is.
My youngest was going in for another surgery, she had just started kindergarten, and loved riding the school bus. She went in for surgery, and was discharged two days later, I brought her home from the hospital and her sister welcomed her like we had done so many times before.
I tucked her in for bed like every other time, her sister went to bed as well.
I woke up early as usual only to find that my world had ended, and my baby girl, my little fighter was no longer with us here, she had passed away in her sleep.
From that moment it was like gravity never existed. The days ran together and the nights were painful and long.
When I had to tell my oldest the scream she let out still resonates in my soul, and was when I knew what it felt like to break a heart twice. It was a sound of pure unbridled grief and pain.
It is 3 years now since that day, and my oldest baby is turning out to be as strong and compassionate as she always was.
I have become almost a participating human again, I swear it was a year before I took a breath again, and it was so hard.
Her and I are proving to ourselves that we can do this, and while it is the hardest thing we have ever done, we have had help from our family and made some connections along the way.
We can do this!
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