Strawberry picking

There's an energy in the air, the kind that only comes when summer arrives! With no car last summer, we didn't really get to take advantage of all the fun things to do here but I have big plans to make up for it this year! And it's even better because we get to bring Emi along with us while we explore. A couple weeks ago we went strawberry picking and had such a good time. We've been encouraging Emi to interact with her surroundings more, so trying new things and offering opportunities for stimulation has been important. We put her toes in the dirt and let her touch and smell the strawberries. She didn't care for the breeze but she did like the sunshine :)

We got lunch before going to the strawberry fields (some of the best Mexican food I've ever had), the weather was perfect, and Emi had just eaten and napped so we took our time picking strawberries. Afterwards, we decided to stop by the beach on our way home (still kind of crazy to me that we can do that!). It was a quick stop just to check it out and dip our toes in, but it felt nice to breathe in the salty air and walk on the sand. The whole day just felt really dreamy. Keep it up California and we just might never leave...

^^I will forever love these ankle rolls.

We love you summer!!

quick trip to Washington!

A few weeks ago, we visited my older brother's family since we didn't get to see them at Emi's blessing. They're having twins in July and we wanted to squeeze in a quick trip before the baby girls come! They conveniently live with my parents right now so we got to see them, too!

It was a super quick trip, just a little over 48 hours, but it exactly what we needed. We hadn't seen them since Christmas so we were due for a visit. My nephew is now two and a half and absolutely hilarious. He kept wanting to hold hands with Emi and wanted to watch her nurse haha. The three minutes of him trying to sit on my lap while pulling Emi's arm as she attempted to nurse definitely gave me a peek into what having more kids might be like haha. But it was so sweet. I loved watching him interact with her. While we were there, my mom watched Emi while we went to the Seattle temple. We don't get to go very often, especially with family, so it felt extra special. At the end of the weekend, after playing lots of games, staying up late, eating a big Sunday dinner, and laughing together, we all agreed that the temple was the best part of our trip (it also happened to be the only thing I got pictures of).

It's hard, wanting to live by family and old friends but also feeling so good about where we're living right now.  I'd love for Emi to be able to be with her cousins and grandparents more, especially as she gets older. Thankfully tickets to Washington and Utah are cheap but it's definitely not the same. We feel like we are where we're supposed to be right now though. We feel so lucky that there are so many opportunities in this area, resources for Emi, and that the weather is beautiful. Plus good food, diversity, and beaches! It's been a year since we've been in California and I surprisingly really like it. More than all that though, it feels like we're meant to be here. So for now, Bay Area it is! (With lots and lots of visits to family and friends of course!)

Becoming a mother

It's been seven months since Emi made me a mama and in case these pictures don't show it enough, I love her so much. Sometime during the first few weeks, someone asked me what the best part of motherhood was and the first thing that came to mind was being able to kiss my own baby's face (and anywhere else!) and nobody saying no because she was mine (and Chris' haha). Truthfully, being a mother has been the best and hardest thing I've ever done, but not for the reasons I expected. The sleepless nights, the constant crying, the loss of self, the loss of some independence and spontaneity, the change in relationships, all of this I expected. I didn't anticipate how having a child would completely change the intensity of every single emotion. I have felt indescribable joy and pain these past months, the kind I'd only ever kind of heard about. Motherhood has expanded my capacity to feel; the highest of highs and the lowest of lows. Becoming a mother is such a different journey for everyone but this is mine.

Note: I hesitate to share what I've been feeling lately because so many in the world are in situations and conditions far worse than mine. We have loving families, a phenomenal medical care team, and a strong support network. We live in a comfortable apartment, have enough to eat, and are employed. From the outside, things look great. But the past few months have been harder than anything I've ever experienced before. Amidst my own challenges, I've realized that everyone is struggling with something though. Aging parents, sick family members, financial strains, unemployment...so many different things. I've learned it doesn't matter if someone's struggle seems "easier" than what I'm going through because it seems hard to that person. Just because someone else's challenges may seem "worse" than mine, it doesn't diminish what I'm going through. And that's okay because there is no linear scale with clear definitions of what is hard/easy. 

My transition into motherhood was a pretty smooth one. I took longer to recover than I thought but other than waving my uninterrupted eight hours of sleep good-bye and making a few adjustments, things went well for us. The little girl of our dreams had finally arrived and she was (and still is!) a content baby who rarely cried. I eased into motherhood so easily that sometimes I even felt guilty for not struggling more. I felt fulfilled taking care of her and being home. At this point, there were only diapers, nursing, and comforting to really worry about. But honestly, I felt like a good mom.

Then came February. The seizures, the tests, the hospital stay...my happy little bubble disappeared. Since we didn't know what was causing her seizures, I felt so much guilt thinking that it could've been something I caused. It was so irrational and unnecessary but it was so strong. In fact, all of my emotions were overwhelming. The feelings of helplessness, never ending worry, inadequacy, frustration, and despair that I couldn't do anything to help my child all fueled my fear of what was going to happen to Emi and her future. And then we found out about the genetic disorder. All of my hopes and dreams for Emi's future are now "probably nots" and the simplest of things are now "maybes." It was devastating and honestly, I still cry about it sometimes. But it has given me perspective that I never would've had otherwise.

I will be the first to admit that I used to say "Emi, stop growing so fast and stay little!" but I will not ever say it again. Because once there is a chance of your child not growing up, not walking, not talking, not hitting the milestones a typical child does, every step forward feels like a victory. When well-meaning strangers say to me "Just wait until she walks!" or some other phrase implying I need to enjoy my time before the next stage, I usually just smile and agree. But inside, I think to myself that I want the next stage because that means development and progress. I'm definitely enjoying her right now, don't get me wrong, but I don't think I'll cry sad tears when she's able to sit up and crawl around.

Motherhood is messy. It's an emotional ride where the high moments are when Emi makes eye contact and belly laughs and where lows are anxiously trying to find seizure medicine that works and fearing for her future. It's also beautiful, rewarding, and really unlike anything else. Emi baby, thanks for making me a mama. I love you more than you'll ever know.

a weekend celebrating Chris and Emi

I have a mound of laundry and unpacking waiting for me but Emi is sleeping and I wanted to write about our special weekend.

Chris finished his time at BYU a year ago but he didn't actually graduate until last December. Since it's a pretty big step in life, we decided to fly back for graduation and make it official. I was so proud of Chris watching him walk across the stage in his cap and gown when his name was called. It felt a little funny since we've been in California for a while but it felt good to close that chapter of our lives.  Many people when they graduate don't know where they're going to work but with the timing of internships and everything, somehow he already has a full-time job. He worked really hard in college to prepare for his career and future family and it's amazing to see where life has taken us.

 We also spent part of the weekend celebrating baby girl! We've been trying for months now to plan Emi's baby blessing and it finally happened! It's a tradition in our church to give a new baby a name and blessing and after rescheduling it three times, we finally decided to do it the same weekend of BYU's graduation ceremony. It's pretty common for people to do it at the church they regularly attend, but since we have so many friends and family members in Utah, it made more sense to do it there.

Chris gave Emi the most beautiful blessing. It was full of love, hope, and positivity. With her recent diagnosis, it's very likely that she'll face many challenges in the future. As a parent, it's been almost unbearably hard to think of what she could go through, but Chris said some things that not only gave me hope she'll have a beautiful life, but that she'll be a light to others. Emi is a gift and we're so happy she's our daughter.

^^I just snapped this quickly because I wanted the cat in the picture and somehow it's one of my favorite photos from the weekend. Emi rarely looks straight into the camera but I love that she's looking in this one! 

 ^^my mom said "Emi is such a beautiful baby but she's not very photogenic..." Haha poor baby girl. I think she's cute no matter what ;)

 ^^she fell asleep after all of the excitement but still looked so sweet in white.

^^Emi wore the same dress I did when I was blessed! It's actually been passed around the family so all of my siblings, cousins, and nephew have been blessed in it. I'm so glad Emi still fit into it!

I love my family and friends so much. Some days it's really hard being so far away and I usually tell myself that skyping and calling is enough, but being physically together this weekend filled me up in the best way. Playing games, going to the temple with Chris, eating good food, watching so many shower Emi with love, and being with people who genuinely care about me and my family lifted me up in a way that I hadn't expected. Celebrating is always fun but this weekend it felt especially needed. Whether it was sent through the internet or shown in person, thanks for all the love.

Six months old // A diagnosis

It's been a while since I wrote anything and since Emi is six months old today, it felt like a good time to write a little bit about what's been going on. Going back to January, we had a bit of a hiccup with our move (we ended up moving out of our new apartment after two weeks because the previous tenant was a heavy smoker) but we were able to find one we loved even more and Chris is enjoying his new job. Things at Apple are extremely secretive so unfortunately, I don't get to hear about the interesting things he's working on but I'm sure it's awesome. We finally bought a car and as much as I wanted to be that cool city person without a car, it's made our life so much easier in this area. On a more serious note, Emi has been having severe health problems that have taken the majority of our time and attention the past few months. Other than to family and some friends, we haven't been very open about it, mostly because I just don't know what to say. It's been a very emotional and difficult few months and this doesn't even really begin to describe it, but here is what's been going on.

A couple days before we moved back in January, Emi started having some abnormal movements a couple times a day that looked really alarming. We took a video of it happening and visited the pediatrician. She was concerned so she put in an urgent referral so that we could see a specialist as soon as possible and also recommended that we get an EEG (a diagnostic test that measures electrical activity in the brain). Even though we felt like "urgent" meant next day, things move a little differently in the medical world so we weren't able to get in until a few weeks later (which, looking back, was very quick and I'm grateful we had the referral). We did the EEG test and then waited to visit a pediatric neurologist to discuss the results.

Since we didn't have a car and the doctor was in downtown San Francisco, Chris took the day off and we rented a car to go together. At the appointment we were told that since Emi didn't have an "episode" during the EEG, the results were inconclusive but that there were some red flags that indicated seizure activity. The doctor said they needed more information so we were told we needed to go to the hospital right away so she could be video monitored for a 24 hour EEG. The neurologist said that she didn't know how long we would be in the hospital but that depending on the tests they might need to do, we could be there for a few days or maybe even a week.

The suddenness and seriousness of it scared us but after the appointment, we got lunch and then went straight to the hospital and got checked in. Chris called his supervisor to let him know what was going on and even though it was only his second week on the job, they told him not worry about anything and focus on his family (this was one of the biggest blessings and one that I will forever be grateful for). This was on a Wednesday at the start of February. The following four days were filled with monitoring, waiting, tests, waiting, discussions with the pediatric and neurology teams, waiting, blood work, waiting, feeling anxious, kind nurses and weird nurses, and waiting. After the 24 hour EEG, results showed that Emi was, as suspected, having seizures and we were told that she had pediatric epilepsy. However, the term epilepsy only means that you have abnormal wave patterns on an EEG and that you've had at least one seizure. So the cause remained unknown. We left the hospital on Saturday with no official diagnosis and medicine to try to stop the seizures.

We spent the next month and a half waiting for test results, trying new medications, and going to various appointments. It was mostly an emotionally draining waiting period, filled with disappointment that the seizures hadn't stopped (she usually has one or two a day) and hope that we would find out the best way to help our baby girl. Results for two (MRI and lumbar puncture) of the three tests came back clear so that left the genetics test.

A few weeks ago, we got a call to come in and meet with our neurologist and the genetic counselor. We had a strong feeling that the results weren't going to be good. Genetics are complicated but to put it simply, there were four genes that they were concerned about, but specifically one that was associated with a disorder. All of Emi's symptoms matched the disorder's symptoms exactly. They needed to test both mine and Chris' genetics to know for sure, but it seemed likely that this genetic disorder was the cause of her seizures. The spectrum for the disorder is wide and the list of potential symptoms is long and scary but essentially, if she had it, there would be developmental delay, learning differences, and a myriad of health problems. That same day, we had an appointment with an eye doctor and found out that she has vision impairment (to what extent, we don't know). To say that we were devastated would be an understatement. That day and the days following were some of the hardest I have ever experienced. We didn't "officially" know yet but both Chris and I felt like this was the cause of her seizures. And unfortunately, we were right. After a few weeks of waiting for the blood work results, they finally came and we got an official diagnosis last week.

Emi has CDKL5 Disorder, a rare genetic disorder that has only recently been identified. We don't know where Emi will be on the spectrum, but since this disorder is characterized by developmental delay, it's very likely that she'll be different than a typical child. There is no cure and the treatment associated with it treats seizures and encourages a variety of therapies (physical, occupational, speech, etc). We don't know much about it yet but our doctors showed us this website.

We're relieved to finally have a diagnosis, but it's clear that we have a long journey ahead of us. Even though it felt like we had to wait a long time, we feel lucky to have found out so soon. We're still trying to stop her seizures completely but finding the right combination of medications and dosage is taking a while. Thankfully, the doctors at Stanford are taking good care of us and we're really grateful it's such a quick drive away (I almost feel like we know Palo Alto better than where we live). Some days are harder than others, but Chris and I are doing okay. We like exploring our new city together and trying new restaurants (we've found some good ones!). We're slowly putting our apartment together and turning it into a home. We spend time with friends and try to go outside as much as we can. A bunch of people even came to visit us this past week!

We have so much to be grateful for despite our challenges. People from our church have been incredible and offered so much help. Many people have kept Emi in their prayers and asked after her. Most of all, we're grateful for Emi. She is the most patient baby and has been a champion throughout all of this. She sleeps through the night, smiles after a lot of effort from her parents, and rewards us with giggles once in a while. She's got chubby rolls and two cute teeth that popped through last week. Since day one, we have felt like she is the perfect baby for us and none of this changes that. We really can't imagine life without her.