My full, somewhat entertaining, life as a homeschooling mommy, raising a child with HLHS (Hypolastic Left Heart Syndrome), following Jesus, and being much too camera happy
When depression begins to hover over me, I feel an immediate sense of dread. The other feelings associated with it are hard to articulate; they don’t make sense either.
It’s a vulnerable subject to talk about, much less write about it on my blog. But I started this blog to share stories about me and my life, and this dark stuff is part of that story. I tried writing an encouraging and happy blog post, but my heart wasn’t in it. Life goes up and down, and I’m down in the valley for the present. But I’ll climb out of it like I have in the past. These experience teach me that people are fragile, no matter the external, and a smile can hide many tears.
I tell myself that if I try a little bit harder and hold fast to that positive attitude, I can overcome it. Maybe if I keep busy I’ll forget too. Maybe I’m a bad Jesus follower and a poor witness of my faith. The more I push it down, the grumpier I get. One thing I detest about this is how it affects my family. My kids wonder why mommy cries for no reason and gets hyper-annoyed by things that were non issues in the past. Disowning it takes it toll on all of us.
When people I know share stories with me about their panic attacks and bouts of depression, I empathize. It’s tough enough dealing with those feelings without the extra stress of convincing someone that you are not feeling this way on purpose. I need to return that kindness towards myself.
Ready for battle…I’m feeling her attitude!
I’m grateful for God who knows and still loves me. He doesn’t get offended by this kind of stuff. Instead He draws closer and shows me, through various ways, that I am not forgotten. I have purpose. One thing I don’t want is for you to feel sorry for me. I’m just sharing what’s on my heart with you.
K, giving myself a big high five that I am not going to delete this post but will publish it. Eeeeek.
“Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. It is his megaphone to rouse a deaf world.”
On a regular outing for coffee, I ended up getting unexpectedly blessed when I tried to bless someone else.
I had thirty minutes to myself before picking up the kids, and I was determined to use it productively: get my coffee, sit down, scroll through Instagram, and spend the last few minutes staring out into space.
Right outside Starbucks was a skinny man with grey hair wearing a faded red polo shirt and cargo pants. He made abrupt hand gestures talking to himself although it sounded like it was a conversation with another person.
In the span of less than thirty seconds, this “pacing” guy quickly shuffled up to a middle-aged patron who was busily typing away on his computer. Before he could even finish asking for spare change, he got turned down immediately with a stare and curt response. He apologized and walked away like he was used to this kind of interaction.
It’s difficult to articulate but I felt like God was prompting me to ask this guy if he wanted coffee. God didn’t ask me to make an earth-shattering move, just a small gesture to help someone out.
I learned how special a good cup of coffee can be during hospital stays with Ellis. She usually won’t let me out of her sight for more than five minutes, so I sit bedside dreaming about how lovely the first sip of iced coffee with a splash of soy milk will be and comfort food instead of Saltines and peanut butter.
So many times, my gracious friends delivered coffee (not from the hospital), treats, food, texts, and their company to ease my stress. Chris also delivered coffee, but he had quite a disastrous experience when he accidentally dropped and spilled a venti-sized coffee in the hospital lobby. I was still grateful he tried but grumpy.
Those memories taight me how a cup of coffee can turn someone’s day around and uplift a person’s discouraged heart.
That Starbucks drink was delivered by a friend that morning. So grateful. Made me more sociable and sane.
The guy smiled and said he would like a large coffee. Then, as I was ordering our drinks, his gaze turned to the refrigerated food section looking intently at the menu options as he pointed from one item to the other. I had an inner conflict that split second: do I ask him if he wants something to eat?; isn’t coffee enough?; and emergency advice-asking prayer…God, what do I do? Please give me a generous heart.
I felt disappointed in myself for questioning so much over this issue when it was clear I should get him something to eat.
“Come on, you can do this with a generous heart and help this guy out” I thought. Countless times people blessed me and my family extravagantly when we were in survival mode with Ellis’ constant illnesses. Sometimes those friends told me that God pressed on their hearts to reach out to me, and those were the exact time when I needed help and encouragement. I’m so thankful they acted upon it.
I resolved to buy this guy’s lunch. I asked, “Would you like something to eat too?” He said, “yea? Thanks” and chose a few items. I sighed silently to myself thinking this would be an expensive coffee outing.
When all our orders were on the counter, I handed my credit card to the cashier. The person must’ve been a supervisor because he wasn’t wearing the green apron. (This is my assumption which may be inaccurate) But this supervisor only rang up my order. I told him to ring up the other items to my card. He answered vaguely and said, “I’ll ring up your order first.”
Once he rang up my order, I was ready to insert the card again. Instead the smiling supervisor with clasped hands told the “pacing” guy that his food “was on the house today.” Huh?! What just happened here?!
I was taken aback because of its unexpected nature. He then looked at me and said, “Thank you for your kindness. I hope you have a great day.” I felt humbled and blessed by this person’s thoughtful act and was filled with gratefulness. It was strange that someone commented on my “kindness,” but he didn’t know the inner turmoil and my reluctance.
I thought I was going to do something nice for a stranger, but in turn I got blessed so much more. I felt God was there in our midst. I was able to see God’s goodness in other people’s hearts. I wanted to be kind, but in turn, I was touched by the Starbucks’ guy’s kindness and thoughtfulness.
The “pacing” guy was very happy too and he asked the supervisor if he could eat inside. He got his food, sat down at one of the tables, and started to unwrap the plastic wrap from his sanwhich. I don’t know why but this sight made me want to cry.
Isn’t God amazing and good?? In that moment God showed me He will bless my feeble efforts and gifts, but I need to first obey His voice. But how many times do I ignore and rationalize why I can’t do what He wants. God is God of the universe and everything belongs to Him anyway, and He makes a way when there is no way. Geesh, such little faith on my part although God shows me his extraordinary love in big and small ways.
When I excitedly shared the story with my kids afterwards, they were interested in the details: what did this guy look like?; did he not have money to buy food?; which sandwich did he pick?; how could I go to Starbucks without them; and lastly, can they get a treat for being good students in science class that morning.
Kids can be so random. But in sharing my honest encounters, the fears and joys that giving produces, I hope they learn too that kindness matters.
Sharing love between little and big Apatosaurus…old drawing by Elliot
On our latest vacation, Ellis ended up getting hospitalized for abdominal migraine again. This happened the first day of our long-awaited trekk to Legoland, San Diego.
Fortunately our plan involved an overnight stay at my parent’s house, because at 1 a.m. I was frantically googling to find a new children’s hospital that had extensive experience working with Hypoplastic Left Heart Syndrome kids. Throughout the day, we tried multiple home remedies but nothing worked: Motrin, prescribed anti-nausea medication, Pedialyte, tummy massage, and many piggy back rides to distract from the pain. It was time to go to the hospital when her breathing sped up and she couldn’t be consoled.
Car rides to the emergency room is especially horrendous in the middle of the night, and this night was no different. I couldn’t believe we were in this situation again, and all kinds of scary thoughts passed through my mind. Well-meaning friends and family tell me not to think of death, but it’s a constant worry for us.
Almost every night I dream of hospital corridors, waiting for doctors, feeding tubes, shots, patients in gurneys, operation rooms, me in her place; my fears project through these nightmares. Doctors told me it’s common for parents with heart children to struggle emotionally and have symptoms similar to Post Traumatic Stress Disorder. In these situations, you brace yourself for the worst and you stil continue to pray and pray for the best outcome.
At 2 a.m. we arrived at CHOC, the Children’s Hospital in Orange County. Before the car even stopped, my car door was already half open and my body ready to jump out. I walked up to the registration window with Ellis, holding a green barf bag, in my arms. I explained how she has a single ventricle, been vomiting continuously, and that she is breathing rapidly. Thankfully, the admitting nurses checked Ellis’ vitals right away and took her into the examination room. If we had to wait, I would’ve had a fit and made a scene although you could tell immediately looking at her that this was urgent. I’ve learned that making a lot of fuss speeds up the process…most of the time.
Our family tries to take these life interruptions in stride, but it’s difficult to accept when they happen. Guilt consumes me: maybe I could’ve done something to prevent her from getting sick; how is Elliot going to deal with this again?; and I feel the weight of Chris’ responsibility in carrying us through these emergencies.
After an initial check up and hours of waiting for test results in the examination room, the attending doctor said she’ll get admitted to treat dehydration and monitor her condition.
Moved up to patient floor from emergency room. Knocked out from pain medication.
With lots of desperate prayer and encouragement from close friends who reminded me to avoid the “what if’s,” I reluctantly let go and decided to let God. He doesn’t take the situation away but He pulls us through. I have to remember that He has good plans for me, even though I don’t understand. I wish I could say that I trusted God from the beginning without all the kicking and screaming, but sadly it wasn’t so.
What I’m going to write next is bizarre. But some of my happiest memories include these hospital stays. It’s a different kind of existence where outside worries stay outside and it brings life’s priorities into perspective. Isolation rooms really make you think and bring you in closer relationship with your child. The bonding is special and I realize that God has given me an important job to take care of this little person.
I can only attribute it to God’s peace, the only kind of peace that passeth understanding (like the lyrics I used to sing in Sunday school).
The second day in the hospital fell on Mother’s Day. I forgot all about it until the nurses reminded me. That wasn’t the reason why I cried. My heart was breaking for Elliot who tries to act happy when he is scared or sad. He knows that we are stressed so he overcompensates with good behavior and kindness. Then, I look over and see Ellis slumped over in bed and I cry for her too. Ugh, so many emotions.
Ellis always saves Jello for Elliot at the hospital
Taking sister around the hospital
Elliot and I spent some quality time together when he visited with Chris the next morning. We took walks outside holding hands, talking about how he slept little because of daddy’s snoring, enjoying the fresh air together, searching for Starbucks, and of course, making a quick stop at the gift shop.
Midday our wonderful nurse Andrea informed us that we will be discharged the next day. We were in much better spirit with family who visited us, family waiting for us to come home, watching “Raven’s Home” on marathon, and freely taking Ellis on wagon rides around the hospital.
CHOC lobby
In the middle of washing her up before bed, she looks up and says, “Mommy, thank you. I know you’re trying your best to take care of me.” Her comment was unexpected and it took me aback. My goodness, she has matured so much. That’s an affirmation I will never forget.
Ellis was discharged the next afternoon. Diagnosis was abdominal migraine again. It’s hard to define it and it’s a cause that resulted after other possible causes were eliminated. She went through days of testing last December to find out what causes these bouts of cyclical vomiting and intense abdominal pain.
There’s not much you can do to control it except to avoid triggers. I asked the doctor what to do if this happens again, and the answer was a bit disheartening: bring her to the e.r. This means that we need to be in driving distance of a hospital wherever we go and our hope of camping outdoors for the first time this summer is definitely a bad idea. Oh well.
We adjust and make the best of our situation. It means we can’t easily do what others do and much more thought goes into making simple decisions, like deciding if we can go somewhere or do something out of our routine.
Although our vacation plans got off to a rocky start, we still got to do lots of fun activities. We also spent more time with family than expected and shared some wonderful conversations and meals together. We still made it to Legoland for the first time and revisited our favorite San Diego Zoo.
Lucked out and saw a baby giraffe
What a trekk! What memories! I assume our next vacation will be a staycation.
Lately I’ve been reading a book titled A Year with C. S. Lewis: each day gives a short excerpt from one of his many works.
I’ve always been his fan, but understanding his writing is challenging. This new book breaks down his ideas into bite-sized bits, and his writings about Easter is enlightening. When I was a kid, Easter was special because my mom would get me a pretty dress for church service. Ugh, the vanity!
As I’ve matured, Easter is more than a pretty dress. Although I know in my heart that Jesus died for my sins, it’s difficult to understand and wholly embrace (gulp, did I just say that? I grew up a Christianmy whole life). But I know that it’s not possible to humanly understand everything about the mysteries of Easter. There’s a lot of scratching of the head and sighs of guilt that here I am still wondering, questioning, and confused.
But an excerpt from C.S. Lewis’ book was helpful in understanding the meaning of Easter better. I hope his words inspire you!
A little fun with the Easter bunny and first time with no tears
Right next to our parking spot was this tiny orange flower. It stood out brightly against my harried and overwhelming afternoon. Ellis suddenly had another stomach episode that had her throwing up in the carseat. Another bout was imminent and parking was congested.
I sighed. A heavy one. In that moment I just told myself that it can all be cleaned up; let’s just not get hospitalized again.
But Elliot was not having it. He was disappointed and grossed out; we were about to go back home instead of picking up his birthday cake and presents. Something from his sister’s side of the backseat touched him and that set off tears. I felt bad for him: torn between disappointment and worry as his sister moaned in pain. Even promising a new toy for Ellis did not get a smile. That means she doesn’t feel well at all.
It was a hectic car ride with two little people: both emotional and both needing different things. Only one me with not enough arms to drive, tap the back of a nauseated child, and hug the other one who felt unloved.
But God refreshes a weary soul with his grace in these moments. As I turned the corner in the busy parking lot, I was amazed to see two side-by-side empty parking spots next to a tree and bush. No other cars vying for those spots either.
All I could mumble was “Really? Where did all the other cars go? Thank you Jesus!” I pulled her out of the carseat just as she was about to hurl. (In case you are worried: it was not on a walkpath. I later covered it with leaves and sticks.)
It was just a parking spot but the timing and the location of it couldn’t have been more perfect. I felt uplifted and grateful that God cares about the struggles that deflate me and answers unsaid prayers.
God is good. Life is not perfect but God journeys with me. I don’t see God but I know His presence is real.
This little orange, right by the throwing up incident, reminded me that God is near and full of grace. Thankful!!
Birthday cake time! All was well later. Still best buds.
