Heart-fix anniversary: 3 years later together

Three years ago this month, we reached an incredible health milestone for Ellis. She finally underwent the 3rd phase of her heart surgeries. This was the goal to reach, meaning that she would’ve survived the first 2 surgeries and was doing well enough to undergo the 3rd one. She’d finally have normal oxygen saturation and less stressed blood circulation through her lungs and heart.

I’m not saying the above for sympathy or to be dramatic, but it’s honest sharing of fears we had of “oh no, the worst could happen.” When I talk about these fears with few close people, I’m stopped right away saying everything will be ok. Chris can’t even go there and shuts down when I get hysterical about Ellis’ health. It’s hard because others feel uncomfortable hearing this stuff. I end up consoling them and feel silenced again. Can’t be positive all the time even though I try.

3 months old

I didn’t pay too much attention to what the doctors said about her skin and nails turning pink post-surgery. But there was an immediate difference; her nails turned pink and the bluish tint on her face disappeared. Now, she could cry and we wouldn’t have to freak out like lunatics that she’ll pass out from it. 

The recommended time to undergo this procedure was 2-4 years of age, depending on the child, and she was already 4. The only hurdle was her slow weight gain; the goal was 30 pounds. The extra weight would provide some cushion and more energy for her body to help in recovery. Her weight hovered in the mid 20s for over a year, and each weight check at the doctor’s office filled me with anxiety. I dreaded hearing that her weight-to-age percentile suggested “failure to thrive”: her weight didn’t make it on the chart compared to similar aged kids.

Since she was born, I’d panic at the small gurgling sound coming from the bassinet or car seat. The first few times caught me off guard, but this became a regular occurrence for our family. Throw ups were a way of life that interrupted whatever we were doing; this happened often during mealtimes, and I was surprised at how we were able to clean it up and go right back to eating. This became our norm. I could even drive with my left hand with my right arm to reach back to comfort or hold the bag. 

Back in the day before Elliot could talk and Ellis was just months old, Elliot became my unofficial helper. When he’d hear the familiar throw up sounds, he’d run to me pointing to the baby that something was wrong.

Playing with Hot Wheels car and rocking bassinet. Elliot is 2 and Ellis, very baby

On seeing my panicked face, his little legs would run to fetch me a barf towel for his sister. Through the years, Elliot’s been a good sport about this even though I can sense more of his frustration. When he was younger, he overlooked it and wondered why she was always doing this; more prone to help. But after many incidents of accidentally touching it, or walking over it with his bare feet (like he did recently), he’s less patient about it.

Just stepped on Ellis’ throw up and in state of disbelief. Got mad at sister for not making it to the toilet on time. Mixture of crying and laughing. Summer 2020

The other night I started swiping through old photos on my phone, going all the way back to 2017. Remembering how the surgery was postponed 2 times, 2 vacations cancelled the night before the trip due to Ellis’ sickness, and latent fear of the future, I cried again. It’s weird how I tell myself that I’m done crying, but I can’t help it. Even though there were many fearful and sad moments, I try to remember the good memories of how we made the best in that situation.

They were small things: Elliot taking a ride in the hospital wagon, picking out food from the cafeteria, Elliot surprising sister with a small toy each night, Ellis saving a Jello for Elliot, me enjoying coffee and treats that friends brought, sitting down with friends to just sit there and get hugged, and thankful that Chris held us all afloat in this chaotic time.

Hanging out together during recovery of 3rd surgery

Hearing the past, Ellis whimpered a little while Elliot assured me that the wetness from his eyes were from yawning.

I reminisce wondering how we made it out alive, albeit my nervous breakdown that came later. Help of our wonderful friends and family members sustained us. If we were alone, I’m sure we would’ve crumbled under the pressure.

God loaned us a fragile one, perhaps to make us stronger despite our fears and weakness and realize that He is the ultimate peace giver in the storms. It’s our story of experiencing God’s presence in a vulnerable situation, unlikely time of feeling extreme love, and finding unexpected joys in that hospital space.

Waiting for the doctors in the surgery waiting area. This is my favorite picture of us holding onto each other. Her little hands on my chest, familiar smell of her face, and her usual warm embrace made my heart break. Outer body goes about doing what I need to do as a caretaker; still smiling; inside, withering under fear.
ICU. She woke up groggy and started crying slowly with a hoarse voice from the effects of the breathing tube. She asked me to come closer to her and asked if her stroller were nearby. When I said yes, she told me to get it so we can go home. Nurse turned on “Beauty and the Beast” movie for her…she hates that movie to this day.
Later in recovery, doctors recommended she take walks to help drain the blood from chest tubes. Amazed at the miracle.
My favorite peeps
Discharge morning
2020. Growing up, and finally lost her first tooth!😃😊❤
Birth
7 years later

*All posted pictures have been approved by Ellis. 😜🎉

Fresh start to a new decade: reflecting back on this past decade

A decade almost over. To think that I’m decades old is definitely sobering. 🙂

My goodness, life has been an adventurous ride for our family these past 10 years. It would be nice if I had a memorable saying, insight packed message to share with you, but the mind goes haywire trying to narrow it down.

Every end of the year, I reflect on all the big highlights. So this time around I’ll try to point out some major ones that rocked my world this decade. There’s more, but for brevity sake the following is a quick snap of those experiences.

  1. Realized the academic route was not for me. Painful to realize at the time after so many years dreaming and preparing for some future unknown role in academia. Thought my degree would transform my life…graduated and discovered that nothing changed. Very anticlimactic.
  2. Wanted to pursue freelance writing, like writing essays or articles, but the path seemed laden with unknowns. Where do you even start? Too overwhelmed. And all the talk of building a social platform freaked me out. Blogging wishes stirred but it took me six years to actually embark.
  3. Became a lucky mom to my 2 amazing and loving kids. I didn’t know this kind of happy love was possible until they came into my world. On the other hand, I’m learning that being a mother means not always being liked by your kids for saying no and teaching them…looking out for their best interest makes you boring and not the most likeable person. That’s ok with me though…
  4. Chris and I have been married for over a decade and we still like each other. He’s my forever and I’ll choose him all over again. Ok, this is corny, but here it is. I mainly drink iced coffee since years back. So…he is the ice for my coffee that brings the drink to a perfect coolness. When we squabble over how to load the dishwasher or other irrelevant things that seem relevant at the time, I tell myself (as learned from our marriage bible study series) “my spouse is not the enemy.”
  5. Raising a special heart child tests my emotional, physical, mental, and spiritual life that goes beyond my strength. It affects Elliot too as a heart sibling when there’s an emergency. But I trust God will fill in the gaps. Through Ellis’ condition however, we have been blessed in tremendous ways rather than hindered by obstacles. Yes, it’s tough all around with social
  6. constraints that seem like excuses. I’m always apologizing that we can’t do this or that. But people are gracious to understand and still invite us.
  7. We begin homeschooling and are in the middle of our fourth year. It’s an exciting learning journey and kids mainly lead in what they want to learn. But I won’t lie. There are days when I feel outnumbered, out stretched, ready to call the whole thing off. Too much flexibility and freedom can paralyze decision making. I feel it a privilege to homeschool and I’m learning do much as well.
  8. I start blogging in 2017 with lots of doubts. Thankfully, I have found an amazing community of other bloggers, made new friends, and kind of badgered my old friends to follow me to pull up my follower numbers. Thankfully, they accepted and still encourage me by reading and commenting.
  9. I get help for depression and anxiety. It’s the worst kind of agony to go through when you feel that the world would be a better place without you. It’s painful and isolating but sharing this fear with loved ones makes it less daunting. This trial gives me more empathy for others going through similar emotions and teaches me that you can rarely tell what someone is going through just by their exterior.
  10. Realized the strong bond connecting family members. As with every family, issues and tensions test your patience, but at the end of the day, you love them dearly for who they are and what theymean to you. Now that I’m thinking about it, I could be that annoying person and not even know it. lol. 😉 No one is perfect.
  11. Friends and people we have met through our adventures affirm that God is always at work. God has a special plan in entrusting Ellis to our family and all four of us have grown in different ways. We have been repeatedly surprised by God’s goodness and faithfulness. We’re not exempt from the troubles, but He walks with us (or pulls/drags me gently) through the mucks of life.
  12. Growing deeper in faith and learning to be a bold follower. God is pretty awesome in that he hears me, provides for me, leads me, and teaches me (don’t like this one too much), and loves me despite my flaws. His grace is amazing.

If you’ve read this far, thank you! That became longer than I thought.

Wow, I also feel like I need to have earth-rumbling new year resolutions as 2020 will be here in 1 day. I’ve got a whole bunch brewing in the back of my head, but will I actually go through with it?? Instead of a list, I think it needs to be a shift in perspective or attitude. Need to think about this more.

“As soon as I pray, you answer me; you encourage me by giving me strength.” Psalm 138:3

And dear readers, thank you for your support, encouragement, and friendship! Incredibly blessed by this blogging community of most people I’ve never met. I didn’t know this place would be so conversational and inviting. Thank you again, and happy happy new year. Wishing you the best and good health in entering the start of a new decade!

A Thankful Thanksgiving 2019

Photo by Caleb Wood on Pexels.com
November 27, 2018. 1st discharge. SLLPtuffed toy as consolation from hospital gift shop. Next destination: pick up Whole Foods holiday meal for Thanksgiving dinner next day.

What a year it’s been. It started with a big cloud looming over my head. Our family had just surfaced from a traumatic 2018 November and December when Ellis got hospitalized for abdominal migraine 3x’s in 2 months. Until this time, we’ve never heard of abdominal migraine or knew of its diagnosis.

I didn’t realize the extent of its overwhelming nature until we had been home for a few weeks. Once everything settled, a tsunami of sadness overtook me and the years of care-taking stress just hit the fan.

Great thing is that we’ve only had 1 hospitalization this year. I am so grateful for this. It’s the worst feeling when your child keeps getting sicker and you have no choice but to beeline to the ER and gets admitted. We cope but it’s difficult to account for sudden life disruptions.

2nd discharge. December 2018
3rd discharge. Ecstatic and ready for Santa’s presents. December 2018
December 2018: Play room at Lucile Packard Children’s Hospital

You just go, go, go. This year’s hospitalization landed on our vacation to San Diego and on Mother’s Day. When the nurse mentioned mother’s day, Ellis wished me a good mother’s day as I sat in the hospital bed next to her crying my eyes out. I couldn’t believe the situation: Ellis writhing in stomach pain, Elliot acting like he was not sad that Legoland trip may be postponed, and Chris trying to keep us all intact in case we decide to continue with our vacation or go back home.

May 2019. On our way to Legoland…a blip on our journey.

These various kinds of emotions teach me that parents cry for their children in good and bad times. Difficult as it is, I find it a blessing to have this privilege.

Made it to Legoland…Ellis got sick again here and when her condition improved, I started crying with relief. Then, totally happy posing for this picture. Emotional roller coaster. May 2019

The strangest thing is that in these times I have incomprehensible peace. They make up some of my sweetest memories of bonding with Ellis, spending quality time with Elliot when he visits with Chris in the evening, and tag teaming with Chris. There’s a fluidity that only God can provide to us in these situations.

Thankful for much this year. Good days, bad days, in-between days. In those bad and in-between days, thankful for people who lift up my spirits. These incidents are reminders that God is faithful and works through people to show his love.

The Lord gives strength to his people; the Lord blesses his people with peace. Psalmm 29:11

And thankful for Whole Foods’ holiday packaged meals. Thankful for family, friends, neighbors, community, hospitals, teachers, kind strangers, Starbucks drive-thru, memories made with friends and family. And of course, thankful for God who loves me (when I have a hard time loving myself) despite my flaws, quirks, and silliness.

For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago.

Ephesians 2:10

Happy Thanksgiving everyone! Wishing you a joyful and gratitude-filled day.

Thank you awesome readers for your encouragement, friendship, and visiting my blog. You readers make my blogging journey rewarding and enjoyable!