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 :)
January
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!
February
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.
March
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.
April
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.
May
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!
June
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.
July
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!
August
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.
September
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.
October
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 :)
November
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.
December
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.