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7 years in a nutshell

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Seven years ago tonight, I arrived at the hospital to get induced for labor at 36 weeks. It was a fearful night full of unknowns and insecurity. The birth plan was for the baby to be born the next afternoon, so she could be taken to the NICU for care before the shift change for the medical team.

I didn’t know if the next day was going to be the worst day of my life: would we see our newborn and begin the medical care to bring her home soon, or were we going to leave the hospital with news that every parent dreads?

For 16 weeks, our family prepared for the best and the worst. When we first found out that our 20 week fetus had a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS), we were terrified from the news and prospect of how we would be able to navigate the future. Doctors sat us down telling us the hardships ahead: surgeries, emergencies, hospitalizations, oxygen saturation, weight and eating issues, feeding tubes, etc. We were lucky to have found out early on, because she could get timely intervention after birth. In some unfortunate cases, the condition is discovered after birth and doctors can lose valuable time to give appropriate care. If no surgical intervention is involved, the condition is fatal.

After the first surgery, the most precarious time would be the first year with survival rates of 20-60%.

Our faces turned white and breathing short. After the doctors explained the diagnosis of this condition, we were counseled with the option to terminate. Feeling like I was in a dream, I had to ask the doctor how much time I had to decide. Chris and I said nothing to each other on the drive home. We picked up lunch, ate at home, and took a nap. Elliot, 1 1/2 year old at the time, was mad that we had the audacity to nap and not give him attention: he came over and bonked us on the head with an empty plastic milk carton. That was his nonverbal cue for ‘I want milk.’

It took us a few days to process the news. We didn’t talk about it, and when we finally discussed it, we both agreed this baby was God’s special gift and he had good plans for us: difficult but good. And the rest is history. It’s been indescribably difficult with lots of unexpected hospital trips, constant nightmares, depression, and a heart held in fear of the worst.

Yet in the storm, God has blessed us so much through her. We call her the ‘game changer,’ because our lives turned upside down when she arrived. What we foresaw for the future stayed in the plan phase. I couldn’t have imagined this kind of life or have wanted it, but now I can’t imagine something different. In difficult times God never lets us down. This is weird to say yet some of my fondest memories are these hospital stays, which made me realize that memorable moments do not only mean happy experiences but hard ones too. We talk about those times with tenderness, disbelief, and humor in recalling what happened. On occasion, Elliot still talks about the day I cried and had to drop him off at our neighbor’s house when I had to drive Ellis to the E.R. He says the chips he had with our neighbor that day was the best ever.

These experiences try our spirits and stretches our faith. We kick and scream, metaphorically, when we think Ellis is getting sick again casting a dark gloom over me. Chris knows that I get super sensitive and start yelling. Don’t ask: I just do because he asks questions, that seem non-common sense about what to do. We know this is my coping mechanism, so he’s aware it’s not a personal attack.

But I love my little girl with her funny laughs, wild hair, and spunkiness. The best is when she hugs me and loves on me at random times. One time I had a nightmare and cried in my sleep. It was late at night but she woke up, turned over, and patted me on my back saying, “Mommy, it’s okay. You’re just tired.” The she fell back asleep. It’s like she was the comforter that night.

We’ve been through a lot together and have seen each other at rock bottom. We’ve cried holding each other for different reasons, but fear was the underlying motivation. But when I feel her warm arms around me, I’m reminded how God has made her stronger and bigger all these years. A miracle.

God had different plans for us; plans we wanted to refuse at first. Still, we don’t know what the future holds but we trust God by looking at how he has brought us through the sudden storms. Moments when my heart drop from terror of the worst outcome, I can do nothing but sigh and give it to God. I don’t do this because I’m super holy or have great faith. The weight of the issue drowns me and it’s so deep that I can only give it to God for keeping my heart safe.

Categories: Faith journey Hospital visits Personal growth

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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!

15 replies ›

    1. God’s plans are now what we think they are. In hindsight however, it’s obvious that God was in the details. I hope that I can see his handprints when they happen and not in hindsight. Hard to keep up the faith when things feel out of control.
      Thank you for your lovely comment and God bless you too!

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      2. Isn’t he?! And he orchestrates and it all comes together into one beautiful piece. Even when it seems like God is not working, we have to remember that he is. I commented before about the saying on a church magnet and it stayed with me: Be patient, God’s working on it.
        Stay well and take care!!

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  2. That’s a beautiful story of love, courage and triumph. You, Chris and Elliot are stronger for having Ellis in your lives and helping her to weather any storm and here’s hoping the worst is in the rear view mirror Esther.

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    1. Thank you so much for your kind comment!! I feel so blessed to have a space to share how God has and is still working in my life. Now I see how God prepared me in many ways to care for a child with chronic illness and to become familiar with homeschooling before it was even considered as an option for our family. He is pretty awesome like that!
      I’m happy that you know my name. Thank you for asking. I thought it was in the Contact section. I’m primitive when it comes to WordPress features; still figuring it out.
      Have a wonderful start to a new week and stay healthy!

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      1. You are a special person Esther and your life is fuller for learning to care for Ellis … think of what you have learned and done in just a few years. She is very pretty and I should have said that as I liked how she posed in the picture.

        It is possible I missed your name, but I did look but maybe in the wrong place(s)? I have never set up the Contact Me on my site and I started it in 2013. At the time, I spent an entire weekend setting it up and doing my first post, then I never tweaked it again until maybe 2018. My site is not too elaborate as some sites are … I did go to the block editor last April but that was because we were going to be going to Windows 10 and Office 365 and I didn’t want to muddle my brain too much! We still have not gone to Windows 10, nor Office 365. My boss and I each have Windows 10 laptops, but our computer guy has not set us up fully. In fact mine has been here since last May and plugged in and taking up space (I have a small house) and my boss only got his when they went to e-learning and he had to use Windows 10 to be compatible. But that’s all he is using it for right now.

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      2. Thank you for this very special affirmation! I feel grateful for readers like you that I can become friends with.
        Ellis continues to teach me and challenge me. It’s not easy though!! Thank goodness kids are cute to lighten the load.
        It took me months and I’m still learning how to use WordPress. The worst is when I accidentally delete a post. I’ve used the help chat often, which helps a lot. I hope your WordPress journey is pleasant and non-frustrating.
        Do you teach classes online?

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      3. Yes, I am glad to know you Esther and I have met many wonderful people here on WordPress. For the first 4 1/2 years it was just two e-mail subscribers, then suddenly it got very busy the tail end of 2017 with other bloggers who suddenly discovered me – in fact, someone commented on a post I did and I said “how did you find me?” Oh well – I had a lot to learn.

        I still have problems with WordPress – in fact I went to the Gutenberg editor a year ago and still have issues with it from time to time – one such time was last Friday when I published a post in the morning and it did not go to Reader. This has happened 3 or 4 times already. They did fix it though – but it did not come through until 6:00 p.m. – in the meantime I had reblogged the post as I had spent a lot of time on it.

        I have had to ask for help from the Happiness Engineers as well – in fact, I used to use quotations a lot when I first began blogging. One time I did a quotation and put it in italics as I usually did and for some reason, I ended the italics but the next post I did, it was in italics. I could not find any code to “turn off” the italics in the previous post. I went in and removed all the content, retyped it over and the next post was still italicized – the Happiness Engineers were able to find it right away – some hidden little macro or something I had done.

        No, I do not teach at all, but my boss, who is a labor lawyer is co-teaching a labor law class at a local university – they have had to finish the term using Skype. I have been a legal secretary for forty years, the last twenty for this boss who is a sole practitioner.

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      4. Thank you! Your thoughtful and conversational comments are wonderful.
        I too have WordPress issues and the worst is when you learn a new feature and forget how to do it again next time. Really appreciate those Happiness Engineers.
        As a legal secretary, I’m sure you come across many interesting people and cases,as well as helping people. Secretaries make a positive difference in a client’s experience. 40 years?! That’s awesome.

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      5. Thank you – yes, now I do labor law for management, but my favorite type of law was medical malpractice and products liability – my current boss does not do that nor any trial work. Yes, forty years is a long time isn’t it? I worked for an advertising agency for about 18 months when I first got out of college, but left it – we lost a lot of people after our agency lost its major account. We lost Chrysler (two other agencies lost that Chrysler account – we did auto ads; they did marine and leasing ads). We got Lincoln-Mercury but that client wanted to do all their ads not allow the art directors and writers any creative input, so they left. I left too as my mentor left so there was no chance to climb up the corporate ladder; he was hoping to get my foot in the door as a “junior copywriter” but unfortunately that did not happen.

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      6. Medical malpractice sounds interesting and dramatic, but not for the people involved in the cases. I’m sure you learned a lot from working in that area. My dad was disappointed when I told him I was going to pursue counseling after college instead of going to law school. It wasn’t my thing to pursue, but it’s an Asian thing that a lot of kids get pressured into doing.
        Labor law must be interesting too, and you must know lots about this area too. Once you put people’s faces to abstract ideas and how laws affect people, it makes the work more worthwhile. I hope you enjoy your work!

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      7. Yes, that is true – my hat is off to anyone in the medical community and their diligence in this horrible pandemic. Well, I had no siblings and my parents paid for my college education. Initially, I wanted to be a veterinarian, but my grades in math and chemistry were bad, so I knew that was not a good idea – besides, it is probably best as I am too much of a bleeding heart to be a veterinarian. I know I disappointed them that I did not find a job in my chosen field – we don’t like to disappoint our parents, but sometimes it is out of our hands, and to study something you would not enjoy would not make you happy either. I do enjoy the legal work, but there are times I don’t understand some parts of it. I used to like all the human resources-type work we did, like the employee rules and regulations and handbooks and that type of work, but now it seems most companies hire H.R. people who are responsible for doing these types of things – the last ten years, a lot of the work my boss did is now done by H.R. people within the company – before they had no H.R. person.

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