thoughts on Emi turning one

I wrote this earlier in the week and contemplated not sharing it. Emi's birthday weekend has been amazing and so far, I'm not as emotional as I thought I would be. But I decided to share this because the days leading up to her birthday have been difficult. Amidst the party planning, there were tear-filled, emotional moments and I want to include more of the whole picture. While I want this blog to be a positive place to read about disability, family, and cdkl5, I also want to be honest. So here's a little bit of the harder side. Next time I'll share how Emi's birthday party went and it will be much happier :)  

After Emi was born, things felt easy. Her birth was long and painful and my recovery dragged on, but everything shifted naturally. Becoming a mother wasn't the difficult adjustment that I imagined it would be. I loved the newborn stage, nursing all the time, holding her small body, and taking it all in since I was told over and over "it goes by so fast." In a way it did, but in a way, it feels odd that it's been a year since Emi joined our family. She turns one this weekend and I'm a mess of emotions, but not the ones I expected to feel a year go.

I can't believe we're already here because it doesn't feel like we should be. Time stopped for us back in January when her seizures started and the past nine months have felt like somewhat of a blur. She looks like a one year old, but she's still mostly like a four month old baby. She doesn't sit up or crawl or have any real interest in toys. We do everything for her and the heartbreaking thing is that we probably will always have to. Even though I once got emotional thinking about how quickly my newborn was growing, I'm almost bitter that I ever thought that. Babies are supposed to grow up and learn new things. I keep reminding myself that Emi is setting her own pace and will show us what she's capable of, but it can be difficult to remember sometimes.

I spent so much of her first year grieving and crying over the future I though she (and we) would have. I try so hard to be positive but there are still dark days. But you know what, we made it to a year. We survived and we're going to keep going. Since the day she was born, Emi has been our little sunshine and she continues to be to this day. She has changed our lives forever and I'm excited to shower her with love this weekend. We love you sweet girl, and happy birthday.

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