Where I'm At

Not a very eloquent title, but it works. And since I’ve been trying to figure out what to say for a few weeks now, I’m just going to go with it.

When I thought of continuing this blog after Emi’s diagnosis, I had a vision for what I wanted it to be. Even amidst our shock and soul-sucking grief, I wanted it to be a positive place. A place where I could share the realities of having a child with disabilities (specifically CDKL5) while also sharing the good and the happy. Yet, despite my goal of blogging X number of times a week, September is coming to a close and I haven’t blogged once this year. Why? It’s complicated, but I want to explain. Maybe need to explain?

I’ve wanted to share Emi updates but there hasn’t been much to say. On the one hand, this is great news. We have had no hospital stays this year, no accidents, no serious illness, and her seizure frequency has stayed about the same (about one to two a week if you’re curious). On the other (much larger) hand, there has been little visible progress. I’m extremely grateful for the progress she has made (I mean, we all went out to eat and celebrated the day Emi sat and “tripod-ed” using her hands at physical therapy) but for most people, her progress seems so small. And compared to most kids, it is. And I get it. But if people could see just how hard she works to hold up her head, to reach for a toy, and how hard we work to engage her in something, all of it would mean so much more. But then, maybe I’m underestimating people. Maybe you do understand (or at least really, really want to and are willing to try) and you do want to cheer her on and celebrate with us, and I’m not giving you a chance. So here’s a little progress report: Emi pounds on a big, red button to let us know she wants “more.” More food, more of an activity, etc. It’s hilarious and wonderful that she figured this out and she is incredibly demanding when it comes to meal times. It took us over a month to teach this and even longer for her to consistently do it. She’s started to learn how to chew, but definitely still prefers the ease of purees. Most of the time she doesn’t want to, but she can tripod and sit for a few seconds unassisted. She’s tracking objects much better and tolerating “play time” a little more. She snuggles and laughs more than ever and for that, we are forever grateful.

As a family, and as individuals, we try really hard to be positive. We make a concerted effort to do fun things together, explore our beautiful state, and get out of our daily routine. We discovered last year that this is crucial to our well-being, our marriage, and our mental health. Earlier this year we went to Japan and had a perfect trip. Honestly, nothing went wrong, Emi took everything in stride, and we did everything we planned on doing. We’ve gone strawberry picking, camping, hiking, cherry picking, and to the beach. We had family and friends come to visit us and Chris and I even got to go on a trip to Canada without Emi. It has been a beautiful, blessed, and wonderful year (and some of the best is yet to come!). I’ve shared pictures from most of these things on instagram, yet haven’t written much more even though I love to write and there has always been so much more to say. I’m not obligated to blog; no one other than maybe my mom misses it. But what happened to my positive place where I would share all the good things?!

In order to be realistic, I have to share the hard parts, too (“hard parts” = my overarching term for the grief, fear, loneliness, frustration, etc). It would be fake and incomplete and unfair to only include the pretty pictures and the happy experiences. Woven between our optimism and high moments are times of darkness, fear, and hurt. The kind of hurt I tuck away but creeps out at the most expected and unsuspecting moments. The kind of fear that leaves me wondering at night and leads us to visit an estate attorney even though I’m 26. If I’m to be honest about our life, some of this needs to be shared. But I keep waiting for the hard parts to get easier to share and they don’t. I’m realizing more and more that CDKL5 has no happy ending and that really, really  sucks.

So without Emi updates and my unwillingness to share the pretty without the hard parts I’m not ready to open up about yet, I’m left with zero things to write about in this little space. But here I am, sharing with the internet world right now that our beautiful life is sometimes incredibly hard. I know having struggles is not unique to us; it’s a rather normal part of the human experience. But these specific “hard parts” are ours and that makes them unique. I realize that I’m not actually sharing what I struggle with, but I share that with very few people. Most of it feels too heavy to share or maybe I’m just a private person but either way, I hope I get there one day because I need to in order to raise awareness and be a better advocate for Emi. Today I’m not there yet.

But here I am, trying.
Such a gorgeous view, but this picture says nothing about what I was actually feeling this day.
side note: I was still very far from the edge!


2018 // Our Year in Review

Somehow it’s the last day of December and 2018 is coming to a close. I can’t believe the holidays are already over, but honestly, this year was a long one. I cried a lot and experienced more heartache than ever before. But as I was going through my planner to write this, I remembered that there was a lot of good, too. We had so many people come visit us in California this year and we made a concerted effort to get out and do fun things. We didn't make our goal of leaving the country as a family but we traveled more than ever, visited new places, and made so many new friends. While it was the hardest year of my life and much of it was spent grieving, it was also a very, very blessed (and full!) year. Last year I loved writing our month by month year end review, so here I go again :) 

Our year started off uncertainly with Chris being unemployed. Most of January was spent job hunting, interviewing, and hanging out at home together. We called it “funemployment” but those few weeks were pretty stressful. Thankfully, we didn’t have to wait long and Chris was hired to work at Apple. We said good-bye to the little apartment where we brought Emi home and where I painted an accent wall with my mom. This was also when things started happening with Emi. Two days before we moved, Emi started having seizures. Our pediatrician set up appointments for an EEG and a pediatric neurologist closer to our new place. Chris started his new job and life in our new city began!

Emi had her first EEG and while we were worried, it was uneventful. Chris started to get settled into his new job and we starting meeting new friends through church! Our neurology appointment didn’t go well and we were sent to the hospital for more tests. We spent four days there, only to leave with an epilepsy diagnosis, cause unknown. New friends invited us to a fancy potluck on Valentine’s Day, my mom came to visit, and we moved again because the previous tenant in our apartment was a smoker and that was a major no-go for us. 
After not having one for almost a year, we bought a car!! More EEGs, more appointments, and more medication for Emi. We met with the genetic counselor for the first time and got a tentative but devastating diagnosis of CDKL5 Deficiency Disorder. We took Emi to a mini zoo and she slept through the whole thing. We settled into our new apartment, had game nights with friends, and felt so much support from our church family after receiving the hard news. 
My two friends from high school, my in-laws, and my dad all came to visit! We received Emi’s official diagnosis of CDKL5. We went hiking, went on dates, and went mini golfing with friends. Emi was given a beautiful baby blessing in Utah the same weekend Chris walked and “officially” graduated. 
We went to a Cinco de Mayo party, explored the beach, and flew to Washington for a quick trip to see my brother’s family! Occupational and physical therapy started in full swing for Emi. We had a last minute BBQ with friends for Memorial Day and we went to Joe Hisaishi’s symphony concert and loved every minute of it! 

We started swim lessons, went strawberry picking, and went hiking with friends! Old friends/roommates from college came to visit so we explored the city and ate a ton of good food. We went to Denver for the International CDKL5 conference with Chris’ parents where we made friends and learned more about the genetic disorder. 
We went camping with Emi for the first time! We visited the library often, celebrated the fourth of July with a BBQ with friends + watching fireworks from the car, and Chris’ mom came for a visit. We went to Tilden Park in Berkeley with cousins and our favorite Thai restaurant in Oakland! 

Emi and I went to Seattle to visit family and go to a high school friend’s wedding! We met Emi's two new cousins, went blueberry picking, and went to my grandma’s house! Then we flew straight to Utah for Chris’ sister’s wedding (it was a busy week). Emi got her bright yellow helmet and there was more therapy, swim lessons, and beach exploring. 
We started the month off by spending Labor Day weekend at Lake Tahoe with friends! Emi visited a specialty clinic for kids with similar disorders, Grammy came to visit, and Chris and I took a flying trapeze class. The month ended with an unexpected trip to Utah for Chris’ grandpa’s funeral. 
We celebrated my birthday with a picnic at the park, went to the pumpkin patch, and explored a new farmer’s market! All four grandparents came into town to celebrate Emi’s first birthday, which we celebrated by having brunch at the park with friends. Then my friend Aubrey came to visit for almost a full week! We went to two Halloween parties and we dressed up as Gru, Scarlett Overkill, and a minion :)
We had lots of dinners with friends, game nights, and we celebrated Chris’ birthday with super fun weekend trip! Then my brother and sister-in-law came into town and we showed them around San Jose. We flew to Washington for Thanksgiving and spent a week holding babies, enjoying the rain, eating way too much food, and together with family.
We spent lots of time in Christmas pajamas and watching Christmas movies. We went to the Creche exhibit in Palo Alto (a bunch of nativities from around the world on display) and Bethlehem in Santa Clara (a reenactment of Christ's birth). We decorated gingerbread cookies and hosted a Christmas gift exchange! We flew to Utah for Christmas, celebrated our wedding anniversary, and soaked in the rest of 2018. 


Our Utah Christmas 2018

I'm currently in that cozy space between Christmas and New Years where all I want to do is relax and eat chocolate and it feels goood. We spent our Christmas in Utah but we flew back to California yesterday and it's so nice to just be home together. It was a happy Christmas spent with family and doing fun things! We felt really blessed this year to be with family, to have gifts, and to be in a warm home. So many don't get that kind of holiday and I know I take it for granted sometimes.

We tried to squeeze in as much as we could while we were there! We went to see Ralph Breaks the Internet, made gingerbread cookies, and decorated the tree! I went to a Christmas play The Forgotten Carols, we played games, and had our third annual "Casual Christmas" with friends. There were lots of deep, thought-provoking conversations about health, religion, and true happiness, plenty of good food, and hanging out in pajamas.

Emi cried quite a bit and didn't sleep well during our trip but I kept feeling grateful that she was with us. She had a seizure on Christmas Day (and honestly on most of the other days, too) and slept almost the entire morning but I was grateful we weren't in the hospital and that Emi wasn't struggling with anything extra. There were a few times when I needed some time alone to process what I was feeling but I've learned that if I let myself be sad and really feel it (rather than avoid it), it helps in the long run. Overall though, it was a very merry Christmas :)
^^Emi and I went to Utah ahead of Chris. She cried the entire night before so I was really nervous for the flight, but overall she did amazingly well! 
^^We got to see lots of friends! So excited for the Hutchinsons and their little twins on the way!
^^a cold morning walk with Emi. She liked the fresh air and playing on the swing with me :)
^^Chris' mom loves tennis so she asked the whole family to do a lesson together. So we did! I probably enjoyed dancing to the music more than actually playing but it was fun! Emi fell asleep in her stroller on the sidelines with Grammy.
^^Christmas pajamas with my favorites. We bought these last year and I hope we wear them for years to come!
^^Emi's new trick. She eventually figured out how to put her pinkie in as well ;)
^^Meeting little Simon at five days old! Our friends had their baby but still came to our annual "Casual Christmas" party to see us! Somehow I didn't get a picture of all of us and I'm bummed. But we played lots of games, talked about babies, and ate lots of treats.
^^My heart in a picture. Also, babies in beanies are the best.
^^Celebrating three years of marriage in the mountains!
^^Chris took me skiing! He has been skiing his whole life and has wanted to teach me since we got married so we made it happen this year!
^^Such a newbie.
^^Until next time Utah!


Thanksgiving week in Washington

We went to Washington to visit my family for Thanksgiving and since Chris got the entire week off, we got to be there for an extra few days! It's been an adjustment this week, getting back into the routine and going to all of Emi's "piled up" therapy appointments but it was so nice to spend time with family. My parents' house got a little crowded at one point but we were extra blessed to have everyone there this year.   

Thanksgiving day itself was surprisingly relaxed. Chris, Emi, and I went on a long walk in the morning and everyone got all of the food ready in the early afternoon. My mom was in charge of the pies (she makes the best pie) and potatoes, my older brother did the turkey, and I did the green beans and sweet potatoes. This year we did something a little different and I loved it. We had the usual turkey dinner, but we did temaki sushi as well. So right next to the turkey we had raw fish, rice, and seaweed ;) (temaki means hand rolled. Basically, you have all the ingredients for sushi laid out and you make your own roll). It was our first time doing it and judging by how popular it was, it probably won't be our last! I didn't take any pictures of the food but oh well. Everything tasted amazing!

Our family is a hang out, eat leftovers, and play board games kind of family but we decided to all do two things together this year: go on a hike and go to the temple together. And we did! With three babies and a toddler, we weren't sure how it would all go but it ended up working out great. Our time at the temple together was so special and a good reminder on the importance of family. Our hike was rainy and too short but so refreshing. We went on a very short hike since we didn't know how the babies would do but all three stayed nice and cozy in their carriers :) Hopefully, next time we'll be able to brave it for a little longer. Living away from it, sometimes I forget just how green it is in the northwest. It is so beautiful and it just takes my breath away sometimes.

Here are some iphone pictures we took over the week (although most of them are from the hike). Hope everyone had a great Thanksgiving and I can't believe Christmas is so close!!
^^He wanted to sit by her but I told him she would probably kick him. And when she did, he just laughed and said "She kicked me!"
^^Their cousin relationship is sweet. 
^^my twin nieces!

^^those bear ears! I didn't think I would love that little coat as much as I do :)
 ^^temple selfie with the fam.

^^skipping rocks in the rain.

^^hanging out with Aubrey, just watching the football game.
^^Thanksgiving day naps. Her sleepy smiles are just so cute!
^^pajama party! 
^^love this little family of mine.