April 19, 2013
I gave myself permission, the other night, to hold a pity party for one. I was going through a pile of paperwork; sorting junk, mail, file, and other. I came across a piece of paper that came from our last Minnesota visit. Jake and I took Livia the first week in April for her last Natural History Study at the University of Minnesota. This piece of paper came from the developmental portion of the study. It charted each visit giving Livia “an age of function” in each column. Gross motor skills, fine motor skills, language, etc. etc. Each column, each visit, the numbers have declined. These numbers are not what caught my attention. The piece of paper included her diagnosis age, in months. Diagnosis: 29 months of age. This sent me into a downward spiral of sadness mixed with and ounce of anger. I felt sorry for myself that I only got 29 months of a “typical” family. 29 months before my worst nightmare became forever etched in my soul. I was angry that Livia’s diagnosis included “terminal.” Angry that unbeknownst and unexpectedly, at any moment, looking at my blonde haired beauty, the thought of her funeral flashes through my mind. It makes me physically nauseated and emotionally beaten.
The news we received in Minnesota was very unwelcome. We have educated ourselves about MPS and what Liv may face. Because of this, we are not naive to what we are facing, it’s just hearing it out loud. Knowing that these facts are really true to our child’s life. Hearing that Livia is digressing faster than what we expected, it’s horrifying.
45 months, that’s how long we’ve known these “facts.” Just shy of 4 years. We’ve settled into our “typical.” Our life. In the beginning months, I mourned what I wasn’t going to have with Livia. I dreamed of softball, girl scouts, music lessons, graduation, her wedding, her children. The majority of these will never happen, and I’ve excepted that. Knowing what I’m not going to get to experience with her makes me cherish what I do get to experience with her, and Finley, even more. With a nightmare of a diagnosis, I’ve made the decision to grasp a hold of every single moment, every single accomplishment, and every single experience that we get to have together. Knowing that someday, I will only have days filled with memories, I want to make those memories for the future a comfort. A reassurance that no matter how many “months” we get with Livia, we smiled through them and we made them incredible.
Breathe your loves ones in and find a reason to smile today.
Moments that make me smile, that I want to share with you. xoxoxoxoxo
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| I see you! |
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| Liv lost her second tooth! I pulled it, and it made me cry. |
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| What kid doesn’t like to jump on a bed?
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| Ring around the Rosy with Knuffle Bunny
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| I have some competition! |
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| Instagram Love |
