Happy Thanksgiving!

Happy Thanksgiving!! Wishing everyone a gratitude filled and memorable day with family and friends.

For us it’s been a rough start to this week with Ellis suddenly getting sick with a stomach bug. All of Monday I hoped to manage the sickness at home, but she got stuck with a really wicked one. The vomiting persisted but the stomach spasms gave her too much discomfort. Even after her heart fix I did not see her in this much pain.

Ended up at staying in the hospital for 2 nights. With her stomach bug, we were in isolation in the hospital room: whoever came into the room had to wear scrubs. But one wonderful thing was that the nurses made our stay as comfortable as possible. They are truly amazing people who don’t squint at things that would make someone else queasy.

Also, the pantry had a beautiful Starbucks coffee machine…decked out in high tech: accessible all hours of the day. This coffee machine took the edge off for me and I was relieved that I wouldn’t get stuck with caffeine withdrawal headaches. Also, I was very thankful for our health insurance. The stress of not being insured in this situation would’ve wiped me out.

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The superb Starbucks coffee machine

I’m grateful for all the the nurses we encountered; their patience and care made all the difference. I’m grateful for our pediatrician, Dr. K., who has been an endless source of support, encouragement, and guidance since Ellis’ birth. What an amazing person she is; both my kids receive her care and they ask me to call her when they feel sick. Dr. K. checked up on Ellis the next morning at the hospital, and we lit up at the sight of her.

On this Thanksgiving day, I’m grateful for my family. I’m grateful for my friends. I’m grateful that I can stay in my pajamas all day and still my kids think I’m beautiful. I’m grateful that Chris is home and has been preparing meals for the kids.

Thank you for listening to my gratitude list: there’s more but I won’t bore you with them.

God is so good to give us a day of thankfulness to share!! Thank you readers and fellow bloggers for journeying with me.

Psalm 9:1

I will praise you, Lord, with all my heart; I will tell of all the marvelous things you have done.

Philippians 4:6-7

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hears and your minds in Christ Jesus.

Thankful for a great year since Ellis’ heart surgery on Sept. 25, 17

One year ago today, Ellis underwent her third heart surgery. Even before her birth, doctors warned us of the various medical and lifestyle challenges we would face in the first few years of her life. They weren’t lying.

It. Was. Tough.

We operated on survival mode and were content with just “getting by.”

Getting to the third surgery wracked our nerves with everything put on hold. So when her cardiologist informed us that surgery was in the horizon for 2017, we were relieved. Our hermetic life continued to make sure she could have the surgery: she had to maintain a constant weight of 30 pounds and keep her healthy to undergo the surgery. The latter was stressful trying to keep all four of us healthy: if one person got sick, it was inevitable that it would pass to another member.

I had to be creative to pass the time; many days I was tired even before the day started. Passing the time meant taking frequent nature walks around our neighborhood, spending many, way too many, hours making crafts with random items laying around the house, and experimenting with making our own YouTube toy review videos (none posted by the way).

Kids knew no difference with this kind of life but it bothered me. I used to joke that my life revolved around a 5 mile radius of our house; I never left San Jose nor rarely left Ellis’ side. I pressured myself to do more from fear that my kids would turn out weird from this unusual life situation. Also, will I have no friends after this? I had to get accustomed to this life circumstance and embrace its unusual nature. Yes, I will…I will as Thoreau wrote, “March to the beat of your [my] own drummer.”

God had big life lessons to teach me in this season of life. First of all, He reassured my heart that we would survive and that we were not alone. We experienced extraordinary kindness from family, friends, and strangers, and experienced God’s reminders that we were loved. I learned that this was a necessary yet scary phase we had to overcome before our circumstance could change for the better.

What a hard lesson in learning about setting my priorities and trusting God. On the outside, you couldn’t tell I was buckling inside from fear, depression, and exhaustion. Alone at night, I felt close to falling apart and not wanting to open my eyes in the morning.

A Time for Everything

Ecclesiastes: 3: 1-8

1  For everything there is a season,
    a time for every activity under heaven.
A time to be born and a time to die.
    A time to plant and a time to harvest.
A time to kill and a time to heal.
    A time to tear down and a time to build up.
A time to cry and a time to laugh.
    A time to grieve and a time to dance.
A time to scatter stones and a time to gather stones.
    A time to embrace and a time to turn away.
A time to search and a time to quit searching.
    A time to keep and a time to throw away.
A time to tear and a time to mend.
    A time to be quiet and a time to speak.
A time to love and a time to hate.
    A time for war and a time for peace.

 

We’ve come a long way since last September 25. There’s been some emergency room visits but nothing in comparison to the past. Ellis knows her heart is fragile and that her condition requires special care, frequent check-ups, and daily medications. Elliot is well aware too of our unique situation and he is familiar with the protocol when Ellis needs to go to the hospital. His resilience and understanding that he needs to let us do our thing makes me proud: he has many questions about his sister’s heart, fears about death and sickness, dealing with feelings of why his sister gets so much attention, and yet he still sees himself as her protector.

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Elliot demonstrating his dinosaur roar to the lab technician for poking Ellis with a needle.

What a difference a year makes. Thank God for his grace and for leading me through those difficult times. I felt closer to God in those moments than in happier times. He reminded me that I can rest my fears in Him, even the fears too painful to acknowledge.

 

It’s inevitable. I get insomnia when I need to sleep.

It’s funky, erratic sleep the night before any heart-related doctor’s appointments for Ellis.  I can’t pinpoint one worry, but a general sense of fear overcomes me. Other concerns that prevent continuous sleep: I’ll oversleep; I’ll be stuck in bay area traffic and miss the appointment entirely; I’ll hear upsetting news; I’ll need to be extra patient with Ellis and attentive throughout the long appointments; I’ll get hangry and run out of coffee; I’ll take at least a day to recover.

The other night I was wide wake at 3 a.m., slept a couple of hours, and woke up at 6 a.m. We were due for a follow-up ENT appointment. With her vocal chord paresis after her heart surgery last fall, extra air passes through the vocal chord making her voice sound raspy and hoarse; also, liquid could sneak into the trachea making it possible for infections and pneumonia.

I dreaded this appointment because it involves pushing a thin camera tube down her nose. While in her nose, she’ll need to make certain sounds and take sips of green dye liquid. It’s uncomfortable and frightening for both of us.

She sits on my lap face-forward and I wrap my arms tightly around her. A nurse stands behind to hold her head still. She acts brave and giggles more than normal, but her dry heaving afterwards tells me otherwise. When the thin camera tip touches her nose, she bursts into a loud cry. Even in her hysteria, she asks “done?,” “be fast.”

These moments jolt me out of complacency. Suddenly, the daily things that irritate me become unimportant; all that matters is comforting this little frightened person. When I mutter “Oh dear Jesus,{” it’s not me taking the Lord’s name in vain. It’s a panicked soul plea; an SOS to Jesus.

If we’re not overly tired, we stop at Nordstrom just blocks away from the hospital. Ellis agrees to go, but she tells me to get the stroller. Looking at pretty things and sitting outside their outdoor cafe revives our wearied spirits and makes our day happier. It amazes me how quickly we forget the pain until next time.

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Colorful blooms at the Stanford mall…forgot to take one outside Nordstrom