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.”
Feeling crummy next day after surgery
Day 2 post op… finally tied her hair.
Wagon ride around the hospital recovery floor
Day 3 post operation
Day 3: Brother’s first visit to see sister
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.
2 A time to be born and a time to die.
A time to plant and a time to harvest.
3 A time to kill and a time to heal.
A time to tear down and a time to build up.
4 A time to cry and a time to laugh.
A time to grieve and a time to dance.
5 A time to scatter stones and a time to gather stones.
A time to embrace and a time to turn away.
6 A time to search and a time to quit searching.
A time to keep and a time to throw away.
7 A time to tear and a time to mend.
A time to be quiet and a time to speak.
8 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.
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.
something funny…I think someone may have farted or burped, not me, right before the picture.
Picture day for hip hop recital
At the zoo together