birthday brunch at the park

Emi turned one!! 

I started thinking about how we should celebrate this big milestone a few months ago and decided to have a party for Emi. It might seem silly since one year olds won't remember but we wanted to do something special. We invited family and friends to a brunch at the park and it was perfect. We picked up some bagels and other breakfast foods for our spread and it turned out better than I imagined! We set up the table in the shade of a beautiful tree, the weather was warm, and there was such a happy feeling. I asked my friend to make a cake and swig cookies and both were so beautiful and tasted amazing! And they were most perfect shade of yellow for our sunshine girl :) So many people came to celebrate Emi and we felt so loved. Seeing other people support our little girl on her big day filled my heart in a uniquely precious way for the first time. 

Emi was tired but she hung out in her high chair for almost the entire time. She loved her first bite of cake and watched contentedly as I opened her presents next to her. I'm not sure how much she understood but I hope she felt loved. All four grandparents came to visit this past weekend and they spoiled Emi the entire time. There were too many cute moments to list and I loved watching them interact. We're so blessed to have such a great community here and feel pretty lucky that we got to celebrate with both family and friends. Happy birthday Emi girl, we love you more than you'll ever know!


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.



Saying good-bye to being 25 feels odd. I feel ten years older and yet I caught myself saying "I'm too young for this" more than a few times this past year. Since Emi was born less than a week after my birthday, twenty-five was a pivotal year, completely characterized by becoming a mother, and then her diagnosis. Simply put, I changed. I'm not the same person anymore. When Emi was born, my world shifted and a part of my heart now resided outside of my body. I had a great responsibility to take care of this new little life. And then when Emi was diagnosed with CDKL5, my world shifted again. Things that I never even noticed or thought of before became so important to me. Things like wheelchair accessibility, special education, and disability awareness. As eye opening as the physical things have been though, Emi has given me a completely new perspective on life that I never would've experienced otherwise.

This past year I cried, I laughed, I grew, and I cried some more. I learned more compassion than ever and my heart broke over and over. I learned that the human spirit is resilient and that life goes on. Most of all, I was reminded that faith, family, and prayer are essential. The role of being a mother of a child with special needs is daunting, but I'm taking it one day at a time.

We celebrated just the three of us today. Chris came home from work early and we had a little picnic at the park. After the sun went down, it got a little chilly (fall!!!) so we headed home and ended the day with a pint of Ben and Jerry's loaded with twenty-six candles. My life is so blessed and I'm feeling extra grateful tonight for my little family, a healthy body, and for the beginning of this new year.