April has been a month full of stress.
First I came down with Shingles. I had mild pain from the rash along my back and in my eye, but the real crisis was how exhausted I was. Shingles left me feeling completely wiped out for a full week. Once again I was reminded about how important health is.
Then Hannah got sick. We tried to quarantine her with my aunt Pam and my parents in hopes of not spreading her virus to Daniel. I felt tremendous guilt that I was unable to comfort Hannah the way she deserved in her sickness, but I had no choice.
Unfortunately, our efforts were in vain. Daniel did indeed come down with the viruses Hannah had. To make a long story short, we ended up back at McLane’s Children’s Hospital on a Sunday night with Daniel running a 103.7 fever.
I suspected that Daniel had pneumonia because of his fever and fast breathing, but his lung X-ray came back clear. (Just an added note–one of the side effects of being a heart mom is the fact that I can read Daniel’s X-rays like a radiologist. I have seen HUNDREDS of Daniel’s X-rays: pre-op, post-op, recovery, at home, you name it. When the X-ray tech took Daniel’s X-ray, I immediately breathed a sigh of relief. It was crystal clear).
When Daniel’s liver enzymes came back elevated, I got scared. I knew that heart failure could cause Daniel to have elevated liver enzymes. The enzymes plus the fact that Daniel had been puking more (something I blamed on reflux) made me worried that Daniel was in heart failure. All of a sudden I saw an emergency trip to Houston flash before my eyes. What if he had to have another surgery? What if he ended up in the Cath lab? What if he needs a transplant? What if, God forbid, he needs a transplant, but isn’t a candidate for one?
When this snowball of worry took root, I quickly banished it from my mind. I have learned that it is completely pointless to worry. If any of those fears materialized, there is absolutely nothing I can do about it. I went back into autopilot– eat, sleep, drink, breathe. Find joy in the moment. Rejoice always. Pray without ceasing. Give thanks in all circumstances.
Thankfully, Daniel’s liver enzymes were only elevated because his viral panels showed he had Adenovirus and Human Metapneumovirus. His echo looked good, so he was not in heart failure. He was sick, so all his body systems are out of whack. His liver function was good; it was just his enzymes elevated.
Through all the stress, we have had wonderful moments. David had his first tee ball game. Hannah has been absolutely loving dance class. Daniel had his first tooth pop through. I feel like I am so busy that I am running around like a chicken with my head cut off, which is how I like it. I am happiest when I am busiest. I am most productive and motivated and organized when I have an insane number of candles burning.
I feel like I have a fire burning within me, propelling me forward. I am incredibly passionate about empowering and equipping parents to be advocates for their medically complex children. I have seen and experienced first-hand the incredible spiritual, financial, and emotional struggles of people who are living in the hospital with their children. I want to do something.
But do you know what I almost forgot? It’s HOLY WEEK.
Amidst the stress of sickness, the passionate planning of projects, the day-to-day craziness of parenting and housework and survival, I almost forgot the most important thing: meditation over the Word, prayer, reflection, and worship.
Today is Maundy Thursday, the day Christians remember the Last Supper in the upper room, Jesus praying in the Garden of Gethsemane, and Judas’ betrayal of Jesus.
I was reading through those texts last night in my chronological bible, and it was Jesus’ words as described in the book of John that resonated with me.
Before Judas’ betrayal, Jesus takes his closest companions with him to pray. He tells them, “My soul is crushed with grief to the point of death” (Matt. 26:38). The book of Luke describes how Jesus was “in such agony of spirit that his sweat fell to the ground like great drops of blood” (Luke 22:44).
Why was Jesus in such agony? Over the next 24 hours, Jesus would endure incredible physical pain– mercilessly flogged with a lead-tipped whip, mocked, denied, and crucified. The agony that Jesus begged his Father, “if it is possible, let this cup of suffering be taken away from me,” (Matt. 26:39) is the spiritual separation from God.
When Jesus submitted to death on the cross, God “made him to be sin who knew no sin, so that in him we might become the righteousness of God” (2 Corinthians 5:21, ESV). Jesus became sin. He took on the sins of the whole world so that we can consider ourselves children of God.
What does it mean to be adopted children of God? Jesus answered this question in the moments leading up to his betrayal in the Garden. He tells his disciples, “I am leaving you with a gift–peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid” (John 14:27, NLT). He says, “I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world” (John 16:33)
There were so many moments that I felt too heavy to pray. When Daniel was intubated, chest stapled shut, chest tubes jutting from his skin, his little eyes looking up at me in helpless pain, there were many days I felt like I couldn’t go on. My only refuge was reading my Bible, praying the Psalms, and listening to Christian music.
When my spirit felt crushed and at my weakest moments, someone would come in to pray with me. His nurse, one of the PICU cardiologists, a chaplain, a secretary at the hospital. In my darkest moments of deepest fear, God continually reminded me of His love and His mercy.
Why am I so motivated to help other families impacted by CHD?
Because the “peace of mind and heart” that Jesus spoke of is an incredibly powerful thing. I want to do whatever I can to financially, emotionally, and spiritually support these people as a response to Christ’s love for me.
If you are interested in supporting the fundraiser for care packages for families inpatient at Children’s Memorial Hermann, please email me at firstname.lastname@example.org
There are a few ways to give:
1. You can buy a t-shirt. Part of the proceeds come to me, which I will use for the care packages. Follow the link, and the shirts will ship directly to your house.
2. If you’d rather 100% of your donation go toward the fundraiser, you can donate directly via my Facebook fundraiser, Venmo, PayPal, cash, or check. Email me for more information. You can also follow the link below:
Care packages will include comfort items like comfy socks, pretty coffee cup, individual coffee creamers, hand lotion, lip balm, prayer cards, a Christian devotional book, and more. Please email me if you’d like more information!