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.
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.
Categories: Faith journey Hospital visits Uncategorized
singlikewildflowers
Welcome to my blog! My name is Esther and I'm so happy you are here. I'm an avid nature photographer and a daydreaming thinker. My posts revolve around photos of nature's beauty, homeschooling adventures with my 2 kids, sporadic reflections on my child's heart condition, Bible reading reflections, gardening feats, and other mish mash things. Hopefully you'll leave encouraged, pensive, or smiling at the simple things of life. Thank you for stopping by and hope you'll find some interesting posts to read!
sing like wildflowers 
As a mother, when I read your words, my heart aches for you and the pain you feel. I look at the smiles in your photos and think of the quiet strength we can find in the warm smiles of the innocence of children. If only we knew what they knew about approaching life at the moment it presents to us instead of the fear of what might be. Hugs to you and your family! xx
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What wonderful strength and resilience you and your family have. Its hard. I did not have serious health issues with my children but with the ADD & ADHD diagnosis, it changed our lives and how we did things. I am praying for you and your family. God always has a plan for us. So glad you have him to lean on.
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Thank you for your kind comment and for sharing a bit of your story!! I’m happy to hear that your sons have overcome their learning trials and are doing well in their careers. So encouraging to know that a diagnosis doesn’t limit potential. Mom, you did great!!
For me last year, it was a crazy time. But God encouraged me through people when I was at my lowest. It was easier to just crawl into a hole and feel bad: not the most productive approach. I’m learning how to take it one day at a time and realizing that I don’t have to know it all.
Thank you for your prayers and for the reminder that God has a plan for all of us!!
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Hello,
I try to contact you few times trough contact form, post comment but unsuccessfully… We contact akismet support team and now I can leave comment but still not sure for contact form. I send you hour ago private message, so please just let me now if you can see it now. And please moderate this first part of comment. I just wont to say hello because finally I can post comment. 🙂
It is blessing to read your post. Our youngest is HLHS, 3 years now – waiting for Fontan. Living with HLHS is not easy life, but with God on our side is little easiest. 🙂
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Hi Manja!! Sorry for my very late reply. I thought I responded, but I guess that was only in my mind. yikes, this mommy brain can get so mixed up.
Thank you for contacting me!! I’m so glad that our story can encourage others living with HLHS. It’s hard to see our young kids go through procedures and be scared for them and for us as a family.
I think the hardest period was waiting for the Fontan…it seems so close but so far. Hang in there and enjoy this time. I hope your son is staying healthy and everyone is well at home. HLHS has its challenges, but it makes you appreciate life and people so much more.
Cheering for you and your family!! God bless and please contact me if you need to talk. Please email me.
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Thank you! ❤
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Let’s keep each other encouraged!! I had one of those days….my daughter sick with a tummy ache all morning and throwing up multiple times. Feel so helpless and tired, but I’m glad to be here to help her. Really need God’s mercy and grace every day. Take care!!!
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So sorry to heard that, but I hope she`ll be better today. Those days – they are just here without announcement and they can be really heavy. But than I read how Ellis is trying to do gymnastics or how you had a good year since Fontan. And that helps because I know I`m not alone and there are people who understand… So just keep writing and be encouraged for all of us. ❤
Greetings from Croatia 🙂
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Life slowly gets better as HLHS kids grow up and find their own personalities. What they don’t have in physical stamina is made up with their fiery spirit and resilience!! I hope your son will stay healthy and you will be his encourager and rock. God sees the sacrifice we moms make and cares for us.
I don’t feel it sometimes cause I am tired!! Medications, appts., feedings,…
Thank you for your encouragement to me!!! I feel so grateful and blessed that my experiences can help someone else.
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