Thursday, April 7, 2016

Anniversaries

Today is the one year anniversary of the scariest day/weeks of our lives. On this day, April 7th, last year Lily had her spinal fusion surgery. It was an awful day that turned into an awful 2 weeks. Well maybe an awful 6 months. Things happened we never expected. Our fears caught us off guard as they were rational fears. Believe me, I am used to irrational fears, but these were rational. She was a sick girl and it was hell to witness.
But I can honestly say we are thankful for today. We are thankful for a healthy girl. A happy girl. A brave girl, well frankly, a brave woman. It's been a year a many changes and those changes were hard. They were so hard. There were more hospitalizations, ER visits and Dr. appointments than we have had in her entire life this past year. Things that were never a concern had become a concern. But today. Today things are good. Lily survived the flu without any respiratory distress, at all. She has been able to wean off some seizures meds (she still has seizures it appears with or without the meds) and is much more alert and happy. She has been more communicative with her devise and despite all the wishing the day would never come, Lily has become a woman and it wasn't the end of the world. Not at all actually. Tough on us emotionally, yes, but not tough on her and that is what matters.
So guys I am so happy to say this April 7th we have a beautiful, brave, healthy 13 year old daughter. One who has made enormous strides this year and one whose been nothing short of a miracle.
I know this special needs journey is a roller coaster. I know some days will hurt more than others. But I have a perfect sense of acceptance with Lily and her being exactly who she is. 
I know it takes a long time to get here and even tougher time staying here, but when we face what we could lose, it changes what really matters. And what matters is we are who we are and we are exactly where and who we are meant to be.
Can I get an Amen?
Her brutiful scar one year later

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