Party of FIVE - Driving, Surviving, and Thriving

I opened up blogger for the first time in almost two years. I found several "family update" drafts (four to be exact) that never got published. Apparently I'm most motivated about two months after having a new baby! 

We welcomed Kai into our family at the end of July. His delivery was quite different than the other two. With Emi and Noa I went a week overdue and I expected to do the same thing this time around, too. I was a little too set on it because when labor started, I was convinced it wasn't the real thing and just pre-labor. All day long my contractions came but they were inconsistent (every ten minutes for 25 seconds, and then 25 minutes would go by with nothing, and then another contraction but for 35 seconds, and on and on). But I wasn't even past my due date, so it couldn't be time, right? Looking back, the intensity of my contractions (and the sounds I was making...iykyk) should've been a clear indication that things were progressing but I kept telling myself that they would become more intense once it was the "real deal." After 20 minutes of consistent contractions in the late afternoon, we knew it was time to buckle down and we'd probably have a baby sometime in the next few hours. All along the plan had been to labor at home as long as possible and then show up at the hospital and have a baby (this is what we did with Noa and it worked beautifully). Instead, we showed up at the hospital with our baby. 

My water broke at home unexpectedly and after another contraction hit, I knew we needed to leave as soon as possible. We did not, in fact, have hours. Chris started running around like the men do in the movies, tossing our stuff into the car while I cleaned the floor (how I was able to do this I have no idea) and changed my clothes. We got into the car and I knew baby's arrival was close. It was unbearable sitting down so I hopped up on my knees (I was in the front seat since we had carseats in the back). Chris asked if he should pull over and I couldn't answer. After about two minutes into our drive, I told Chris I could feel baby's head. He swerved and pulled over so quickly I almost toppled over. He had time to put the car in park, help me with my clothes, and then he caught the baby. Three minutes into our ten minute drive to the hospital, Kai was born on the side of the road in the car. I rubbed him, he cried, and he breathed normally. His color looked fine and I held him skin to skin. Chris looked at me and said, "Well, should we just go to the hospital? We're already in the car and on the way." So that's what we did. We called the hospital to let them know we'd be arriving and they met us at the emergency room entrance. Kai was still attached to me at this point so we did all of the afterbirth stuff plus newborn tests at the hospital. Due to his speedy birth, the doctors had concerns about some respiratory issues but overall, Kai was healthy. 

We had a great hospital stay and came home to our girls after 24 hours away. They met him first thing in the morning and that will be one of my favorite moments ever. Noa kept talking about how small he was ("His eyes are small!" "His nose is small!" "His fingers are small!), how there wasn't a baby in my belly anymore, and how he was born in the car. Emi was smiley and in a giggly mood. When we brought Kai close to her, she grabbed his hand, smiled, and bounced happily. It was such a special moment. 

Some commonly asked questions. What was going through your mind? In the few minutes we were in the car before Kai's arrival, I wasn't really thinking, more just feeling the inevitability of what was happening. After Kai was born, I felt extreme relief; I wasn't pregnant anymore and labor was over! Our baby was finally here! Then the "did we really just have our baby in the car?!" hit haha. How did Chris handle playing midwife? I don't know if it was the adrenaline, shock, or Chris' disposition (probably a combo of all three), but he was very calm. He didn't freak out or get squeamish at all. Was your car completely destroyed? No. The seat definitely needed a good scrub but there was hardly any blood at all. Overall, I wouldn't recommend a car birth, not because of the cleaning hassle but rather the process of getting a birth certificate. It was a major pain. Fun fact: Kai's birth place is "auto" and the cross streets of where we were. 

Overall the transition has gone well. The first week of Kai’s life was a little scary since he went back to the hospital and stayed in the NICU for four days for reasons unrelated to his wild birth. Everything turned out fine but it was a hard and emotional week for everyone.

We had help from day one. Chris' mom happened to be in town to watch the girls for a few last minute dates before baby's arrival (ha) so she stayed with them while we were in the hospital. My mom arrived the day we left the hospital and stayed for three weeks. She did all of the laundry, cooking, cleaning, and grocery shopping. I wish everyone got to experience this because it truly made such a difference. She also helped Emi every single night. In the three weeks she was here, Emi only slept through the night three times. Emi often cries/screams at night so despite having a newborn, we felt extremely well rested because we knew Emi had someone to help her and we didn’t need to get up. I’m so grateful for my mom and all that she did while she was here. I’m also willing to bet that she was very grateful to go home and sleep in her own bed haha. 

During that time my dad came for three days and also got to meet Kai and spend time with us. Chris' parents, Doug and Carolee, stopped in San Jose on their way to Japan so they got to see Kai within the first few weeks as well! All the while Chris was on paternity leave and got to spend every day at home. I spent most of my time in bed resting, nursing, and eating while Chris played with the girls and my mom took care of running the house. Kai is almost two months old now, Chris is back at work, and life feels like it's creating it's own new rhythm.

A bit about life in general. 

Emi started kindergarten! She rides the bus and has a full day of school. I wasn't very emotional about it since she's been going to preschool for two and a half years and she rode the bus for part of that time BUT it's very exciting and I'm very happy for her. She seems to like it so far! She gets therapy at school and brings home lots of art projects. Her moods can still be a little volatile but much of the screaming/raging has subsided...except at night. We're still trying to figure that out. She took Kai's arrival in stride. Since Emi likes to move her arms and legs around quite a bit and Kai is still little, they haven't spend a lot of time physically very close to each other, but one time we brought Kai to Emi's face and she turned her head and gave him a big kiss. It was so cute we asked her to do it again so we could take a picture and instead of kissing him, she brought her hand up and shoved him away. It was a very definite "No thank you, once was enough" haha. It's been very sweet to watch Emi's relationship with Noa grow over the past two years; I'm looking forward to seeing her relationship with Kai emerge. 

It's impossible to describe what it's been like to have Noa in our family the past two years, but in short, it's been fulfilling, eye opening, and so fun. The majority of the time, I've felt like a first time parent who is unreasonably proud of their daughter and thinks she's a genius at everything haha. She is loud and expressive at home and reserved and observant everywhere else. She is a hilarious and thoughtful toddler.  Our house is full of laughter thanks to her. The other day she told us she couldn't say please because there were germs in her mouth. The next day it was because there was too much spit. She loves to draw, read books, go on walks, and watch the movie Totoro. She is very, very talkative in Japanese but says a few words in English that she happily announces "Grammy taught me."

Leading up the Kai's birth, Noa gave my belly hugs, toys, and lots of kisses. She greeted my baby belly and would often bring her doll to me and say "Same!" while pointing at my stomach. I think she had a pretty good grasp that a baby would be arriving. Since Kai's arrival, she has been very affectionate, she wakes him up so they can "play" together, and she shows him everything she's doing. There were some colossal tantrums the first few weeks that left Chris and me bewildered, but she has mellowed out a little bit. We're still dealing with a lot of big feelings but it feels more in the realm of "typical two year old" and less "there has been a huge change, what is going on?!"

Chris is still working at Apple and I'm still at home with the kids. We both like our day jobs and wish there was more time for each other and our hobbies, but we squeeze them in as best we can. We love the Bay Area and plan on staying here for the foreseeable future. We've been here five years but there is so much left to explore! Sleep has evaded our home for years now (Noa also wakes up at night) so Chris and I are tired, but we're really happy. Despite my serious anxiety about our sleep deprivation with three kids, so far that part hasn't felt much different. We definitely feel outnumbered when they're all awake though. 

Having a new baby has brought so much joy into our home. We feel very blessed to have our family and the life we've created here the past few years. I remember feeling so nervous after having Noa because I couldn't picture what life would be like with two kids. We still have a lot to figure out (obviously) but as we learned after having Noa, you just kind of do it on the go. Did we have hard days and miserable moments? Absolutely. But somehow we adjusted, adapted, and grew and here we are, adding another one to the mix. I still don't know what life will look like exactly with three kids and the needs they each have, but I believe that we'll figure it out, making mistakes and happy memories along the way.

Look at those fuzzy cheeks!! One of the best parts of snuggling a newborn, all the fuzz!

Becoming a family of four

I've been feeling the urge to write again, even though blogs are basically considered vintage now. But it's been two months since we welcomed a new baby and I have a lot on my mind, so here we go! 

In May, we welcomed Noa Romney into our family. Although Emi was born at a birth center, her birth was extremely difficult and long so this time around I wanted to be in a hospital just in case I wanted additional resources. Despite my fear of hospitals, her birth was everything I wanted it to be. Chris and our doula, Paige, supported me as I labored at home until I felt the urge to leave (I had a pretty strong feeling that if I didn't leave soon, I wouldn't be able to). After a fast and intense hour at the hospital, our baby girl was born after a few powerful contractions. Everything went so quickly and smoothly in comparison to Emi's birth that Chris and I kept marveling that she had arrived already. Funnily enough, I went into labor the exact same time I did as with Emi-- 3:30 am, six days past my due date. So the entire time I kept bracing myself for a really long labor, but Noa was born an entire 24 hours earlier than Emi! 

We have definitely had some challenging days (specifically with Emi) but postpartum has been so much easier this time around. My recovery was faster, I knew what to expect when my milk came in, and my mom came again to help for two weeks. Chris also had paternity leave, which I recognize is an incredible privilege. 

My days with both girls have formed a natural rhythm. We go on long walks in the morning, nap in the afternoon, and Chris and I divide up responsibilities both morning and night. Noa likes to be held so she spends most of the day in a carrier or in my arms, but I don't mind since she gifts us with eight hours of sleep every night (and miraculously has since she was five weeks old?!). Emi doesn't show much interest in Noa, but expresses annoyance when she cries. Noa, on the other hand, has never been bothered by Emi's crying and I think its because she heard so much of it while in utero ha. The other day Emi grabbed Noa's foot and it was super cute until Emi scratched her and made her cry. But even still, the entire interaction made me smile. 

During my entire pregnancy (and even before that), I worried about the logistics of having a baby with a child in a wheelchair, how I would care for two littles who would need to be held, how it would all "look." Some of these were disability specific and some were "normal" adding-another-child concerns. While it's only been two months, I've discovered that you just figure it out and do it. For example, Chris and I timed how long it would take one of us to get Emi buckled into her wheelchair, put Noa in the carrier, walk/take the elevator down to the parking garage, load both girls, and get the wheelchair into the car with the portable ramp. Knowing this has helped us get out the door on time and have realistic expectations for going anywhere (without rushing, it's about 13 minutes. Plus doing it all in reverse when we arrive at our destination). 

Overall, the adjustment from going to one to two has gone well. We never really left the baby stage (diapers, waking up multiple times a night, crying without knowing the reason, etc) so we just added another one. There's always someone that wants to be held, a diaper to change, dishes to wash, and laundry waiting, but somehow we do it. To be honest, things are quite happy if Emi is having a good day. Her moods can be quite extreme so if she's sad or raging (when she screams and is inconsolable, sometimes for hours or days), it usually ends up being hard and exhausting. So we are grateful for every happy day we get💛

It's been a few weeks now since Noa started smiling and cooing and I have to say, it's truly a different experience having a child that can see. Chris and I marvel at how Noa makes eye contact and reacts to our facial expressions. It's wonderful to feel such awe daily, but I simultaneously wish I didn't sometimes. It's difficult to explain, but it almost feels like my awe disrespects Emi's differences and disabilities. I know that we are just beginning to navigate the journey of having a non disabled child but we've had many discussions surrounding the emotions and complexities of parenting two very different children (at least we assume so. We didn't do genetic testing). I'm not sure exactly what things will look like but I know we will figure it out as we go along, especially as Noa gets older. For now, we are enjoying all of the babyness :)

The Romney family is doing well. Chris is still working from home, but it seems like he may be returning to the office in September. Emi is in preschool and loves it. She's also been seizure free for months and even though we aren't exactly sure why, I'm so grateful for it. I enjoy taking pictures of my family and love being able to stay home with my girls. Noa is a content baby who loves to look around and chat and sing with us. I definitely did not need to worry that I wouldn't find my second child as cute as my first haha. We survived a pandemic and are feeling hopeful as we emerge from covid life. When I looked back at my last post, I realized we've all come a long way in the past two years. I'm grateful for the growth, the good times, and this new beautiful family of four I have. 

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 :) 

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.