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An Open Letter to everyone wondering what It’s like

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An Open Letter to everyone wondering what It’s like

March 13, 2017...Charlotte is born. I'm happy to experience the smell of rubber gloves as I walk into the hospital room where my first niece was born. I look down and the first sight of her takes my breath away. She's beautiful. Like nothing I've ever seen before. Her eyes could intoxic any person within ten feet of her. I didn't even know her yet, and somehow I knew she was perfect.

April 16th, 2017...it was Easter. I was sitting with my entire family when Charlotte fell asleep in my arms for the first time. I remembered a story my dad told me about when I was younger. He held me in his arms and rocked me to sleep. He told himself he would never forget that moment...something I also told myself on that Easter afternoon.

December 25th, 2017....Christmas morning with Charlotte. I remember hearing her giggle at the dancing dog I bought her. She looked at her momma like she was the happiest person in the entire world...little does she know that is exactly how she makes all of us feel.

March 11th, 2018....Charlotte's first birthday party. When I walked in and saw her in her unicorn themed dress she took my breath away once again. As she stuffed her rainbow cake in her adorable cheeks I could feel my heart fill with such satisfaction. As if anything could of happened to me in that moment and I still would have been okay as long as she was there. She was absolute perfection in every way possible, and I now know that nothing will ever change that

July 5th, 2018... a day we all wish we could forget, but never will. I woke up to a phone call from my brother at 7:23 a.m. saying charlotte had a seizure. We rushed to UMASS Memorial where she was admitted to the ER. I walked into the hospital to find Becky's brother and sisters in the waiting room. I sat with them as my parents rushed in to check on Charlotte, Trevor, and Becky. The familiar smell of rubber gloves hits me, but this time I felt sick from it. I'm thankful for Becky's brother and sisters being there, talking to them made me realize I wasn't alone. About an hour after waiting to hear anything, Trevor and Becky came out to the waiting room for a moment. I didn't even have time to think before I walked up to Trevor and hugged him as tight as I could. James (Becky's brother) did the same for her. It was awhile after that before we finally had a diagnosis for Charlotte. She eventually was diagnosed with Transverse Myelitis. It unfortunately left her paralyzed from the neck down and she now has a trache to help her breathe.

August 4th, 2018....we are at Children's Hospital and Becky and Trevor decide to go shopping for the first time since Charlotte got sick. Me and my Auntie Kim are sitting with Charlotte in her dimly lit hospital room. The expression “you could hear a needle drop" does not even begin to explain how quiet it was as Charlotte was falling asleep. I turn around for one moment...and the needle dropped. Her machines started screaming as I saw a little color leave her body. My Aunt is crying next to me and I'm trying to respond, but all I feel is ice. Like it was running through me, stopping me from saying anything or making any kind of emotion. I'm frozen while what seems like hundreds of doctors rush in to help Charlotte. The beeping stops and Charlotte's eyes open. I feel my body starting to regain feeling, yet I still can't move. I wonder how I am ever supposed to leave that spot, let alone that hospital room, ever again.

September 5th, 2018...Charlotte is finally stable enough and ready to be moved to Rehab, 490 miles away. As I recieve a picture of Charlotte in her new hospital room, I'm talking with my work collegues about a customer who is having “the worst day of her life" because her grapes are sour. I ask to go to the bathroom. I still wonder if they noticed that I was already crying before I asked to go. While walking to the bathroom, I think of that scene from The Pursuit of Happiness where he is walking down the street, too happy to speak and not knowing what to do with his hands. That same feeling of happiness ran through me. Yes of course Charlotte is still sick, but she can finally work on getting better instead of us having to figure out what is wrong. She can finally start to live her life again.

September 27th, 2018...after three and a half long weeks without Charlotte, I finally get to go see her. I walk in the new hospital, eager to smell the rubber gloves. I walk into her room and she looks at me as if she did not remember me, (a reaction I was terrified to get). It only took one word out of my mouth for her to realize who I was and give me the biggest smile I had seen from her in a long time. She took my breath away again, but this time it felt just like the first time. She looks perfect. Every bit as beautiful and courageous as the little girl I knew before. I realize in this moment how lucky we are. How absolutely amazing Charlotte is and how she will always be that way. This illness broke all of us for awhile, except for Charlotte. Charlotte never gave up hope and I can hear that in her voice when she laughs at every little thing.

Today...I am so proud of the little girl Charlotte has become. She is determined and fierce as ever. She knows that there may be ignorant people in this word, but she will never let them bring her down. She strives to be her very best everyday and she is only 19 months old. She has conquered so much in her life so far and still has so much more to go. I want people to take something from this. Whether it be the strength from a perfect little girl or the affect a families love can have on one another, I think we all should take a page from “Charlie's Chapter".

“Though she be but little, She is fierce"

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