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.

twenty-six

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.

Spending Labor Day weekend at Lake Tahoe!

After living in California for over a year, we finally made it to Lake Tahoe! And I'm so glad we did because it was absolutely beautiful. It's just too bad we decided to go when the rest of California went as well haha.

After a lot of last minute scrambling, we left Friday afternoon and joined the thousands of other cars heading out for the three day weekend. I love you California but I do not love your traffic. Anyways, for the first part of the drive we entertained ourselves by taking videos of each other singing, chatting with Emi, and laughing about past road trips. Even though it was the longest car ride Emi has ever been on, she did amazingly well and slept almost the entire time! She only fussed the last ten minutes so basically Chris and I got five hours to just talk. It was really nice to have that time to reconnect without laptops or books in between us.

We spent Saturday at Emerald Bay playing in the lake, paddle boarding, and building sandcastles. Emi got passed around between our friends and mostly hung out in the shade. Chris and I went paddle boarding for the first time and I surprisingly loved it. There were a lot of boats out by the time we went out but those few minutes on the lake were my favorite of the entire weekend! On Sunday we went to church and had a slower paced day. We played disc golf in a really pretty area, played board games, and hung out with friends. Monday morning came and we headed home!

We feel really lucky to have friends out here, especially ones who plan these kind of things. We weren't sure if we were going to go, but I'm so glad we decided to. We'll be back, Lake Tahoe!

**The airbnb we stayed at was redoing the walkway, hence all the caution tape. It definitely made hauling our babies and our stuff an adventure!

blueberry picking in Washington!

I visited my family in Washington a few weeks ago and while we were there, we went blueberry picking. My parents live in a rural town so the farm was only a four minute drive from their house! What a dream! Chris couldn't come with us to Washington and we missed him, but I definitely missed him most while picking berries. He loves blueberries so I was bummed he missed out. It was just me, my mom, Emi, and my nephew, and since we were running behind, we had to pick quickly before they closed at noon. I was really excited to take Emi but she made it very clear that she was hot, tired, and not interested in the berries. Which was really too bad because they were so sweet and juicy. Honestly probably some of the best berries I've ever had! Thankfully Emi fell asleep pretty quickly in the ergo, but it definitely was not like our strawberry picking experience earlier this summer. I guess you win some, you lose some!I brought our big camera, but without Chris' help, I didn't bring it out much. Which is kind of too bad because it was such a good trip, I would've loved to have more pictures. I got to celebrate and attend the wedding of a close friend from high school, see extended family, and meet my new twin nieces (I might share some pictures of them later since I took quite of few)! I played board games with my brother, my mom made three blueberry pies, and I went out to lunch with a girlfriend. My mom also arranged girl time and we all got pedicures! It was the perfect balance of laid back hang-out-with-family days and go-do-and-see-things days.I was really worried how Emi would do without Chris (and me without Chris for three flights...), but we did it and it somehow went really well! We really wished Chris could've come with but I'm so glad I got to spend some time with friends and family this summer. 

^^We picked thirteen pounds of blueberries! And by we, I mean I picked about maybe a pound in between eating handfuls and my mom picked the rest haha. Thanks mom! ;)

ten things about my ten month old

 Emi is ten months old! Her birthday feels like it's right around the corner and I'm having a hard time believing it. It feels like I just wrote "five things about my five week old" but here we are! There are so many things that I think I will remember, yet when I read my journal or old posts there are things I've forgotten. So here are ten things about right now that I want to remember.

1. Emi loves to suck on her pointer finger and thumb. She has a really funny habit right now of having a hard time choosing between her left and right hand, so she'll switch hands and fingers every few seconds.
2. She smiles more and laughs more than she ever has before and it makes me happier than anything. Sometimes when she just chats and laughs on her own I wonder what she finds so funny, but whatever it is, I'll take it!
3. That being said, it takes a lot of work to get her to laugh in response to us. We have to find a very specific spot when we tickle her, raise our voices embarrassingly high, and practically convince her to laugh. But when she does, it's kind of the best thing in this whole world.
4. When she has a lot of energy or when she's excited, she loves to kick her legs when she's laying on the ground. The mattress in her crib is a little springy and she loves to kick and bounce herself when she's in it.
5. Emi doesn't crawl but she rotates around on the ground. She'll kick and roll around and before long, she'll have moved a few feet.
6. She still has chubby thighs, big cheeks, and ankle rolls. She's so squish-able and I love giving her hugs.
7. Emi loves her greens! Spinach, broccoli, avocado, green peas, zucchini...all of it. She doesn't love fruit but she'll eat it if it's with a veggie haha.
8. She has four teeth!
9. Emi's developmental road is different than a typical child's, but as she gets older, the differences become more apparent (and will only continue to become more pronounced). Sometimes it's hard for me to see pictures and videos of babies Emi's age or younger since it reminds of what she's not doing yet and may never do. While I would give almost anything for her to be doing the same things, I'm trying to appreciate her extended baby stage and enjoy her right now.
10. Everywhere we go, people are drawn to Emi. It could be her big blue eyes and long eyelashes, but I believe it's because they feel her unique spirit. As her mama there's a natural bias, but Emi is exceptional in her own way and I'm positive that other people feel it, too. Or even if it is just because she's cute, I love the sweet love that people have for her.

***Since Emi can't quite sit up yet and rolls over after 0.2 seconds of tummy time, she's developed a flat spot on her head. We decided to help round it out with a cranial remolding helmet. She'll probably have it 4-6 months. I think the yellow was a good choice. It's such a happy color! If you have any questions about it, feel free to ask! 

how the Romney family is doing

I never know how to answer when someone asks "How are you doing?"

The short (sometimes truthful, sometimes not) answer is "We're good!"

Here's the long answer.
Emi is our chunky, but tall, nine month old. She is currently in occupational, physical, and speech therapy. We're also in a mommy and me swim class, which is more for fun since she enjoys the water so much. We're not swamped with appointments, but there are enough to keep us busy! We're working on helping Emi hold up her head and sit up on her own. We're also trying to help her reach for toys and provide extra sensory stimulation. She doesn't love solid foods but she'll happily eat broccoli, avocado, and peas. She has three teeth and one on the way! She loves being in the water, her red ball, hearing her own voice, and nursing. She dislikes being hot, teething, and exercising. She loves both of her parents, her grandparents, and Sophie the giraffe.

Some days are really, really good. I've been enjoying the beautiful weather, friends and family coming to visit, going on outings, and honestly just loving this California summer. Other days are really hard. Sometimes I sit on my kitchen floor and cry and feel overwhelmed and get angry that her seizures just won't go away. I still feel a lot of sadness that having this disorder is Emi's reality and I think a small part of me will always feel that way. But I'm also genuinely happy right now. I love Emi and feel lucky that she came to us. I love that she's still my squishy baby and that I get to cuddle her. I'm not really sure how my body is able to handle so many emotions but somehow, it does. Overall, we're trying to be positive and optimistic. Since the severity can vary so much from child to child, we're just taking one day at a time. We love our little lady and just like every other parent, we want to do as much as we can to help her be successful. And even though I don't know how to answer sometimes, thank you to all who ask after us and show so much love.

Chris made this beautiful video and I thought I would include it. I love the way it expresses how he feels.