This moment is not what I pictured. Instead of Thanksgiving Day prep and play time with one of our favorite kids, Charlie and I will stay home while l spend today hugging the toilet. I’m supposed to be making a pumpkin roll and cream cheese grape salad. I am not supposed to be taking little sips of Gatorade while Charlie assures me that I’m brave. I feel frustrated, a teensy bit angry, and quite a bit of sadness. Can I catch a break? Ugh. Then I stop and realize all of our struggles (and all of God’s support that accompanies it) means that I have to smile. Our bits of happiness stem from cultivating gratitude in the midst of illness, and each day that we practice this, the more natural it becomes. Even more importantly, when we do this, we draw closer to God and one another.
How fortunate am I to have a partner prepare blankets on the couch, extra toilet paper by the commode, and Home Alone on the DVD player? I have this little guy, my vitamin C, to bring me hope and reminders of strength. When did he become so helpful and caring? Probably somewhere amidst his hospital stays. Then I’m reminded of our special existence, and I struggle to find peace in the imperfection. Will we ever be “normal”?
Let me rewind to a couple of days ago when normalcy was within my grasp…Charlie caught the tummy bug he’s now passed along. I can’t keep him in a bubble, and as my friend Stephanie said, he’d be sure to Ninja kick right out of it anyway. Honestly? I felt immense joy at his typical illness. It was his first time to catch something that didn’t involve concerns about oxygen levels dropping and ER visits. Everyone has kids that poop their pants and vomit. All you do is keep them hydrated, snuggle them, pray for them, and maybe take them to the doctor for some anti-nausea medicine if it persists. FINALLY! I was going to be like everyone else. Easy. As I cuddled him and sang songs, I smiled at our picture perfect illness. (Yes. I always knew there’d be a day Charlie would catch a stomach bug or some other virus, and I knew we’d be able to play it out at home like everyone else. This was our moment!) Except he couldn’t keep water down. Except the urgent care clinic couldn’t provide necessary blood tests ordered from cardiology nor did the medicine provided stop the vomit. Why, even for a second, did I dare to imagine normalcy? On route to the ER, I felt foolish for picturing these things. Hasn’t CHD and life taught me to stay low in humble acceptance? How silly to imagine anything outside of God’s grace and love. After all, that’s the only thing that’s guaranteed, and I’ve found its more than enough. I could say it was horrible. I could say it was nightmarish and scary. I could share how my hands shook as I held my phone for Charlie to watch Ironman’s heart surgery while he endured another poke. Instead, I’ll speak the beautiful truths: our visit to the ER was full of joy and laughter. IV fluids and medication made him all better. As always, we received VIP treatment and skipped the wait (pretty cool, right?). Texas Children’s Hospital is the best in the world when it comes to caring for children with heart defects. Secondly, we had this amazing man making ears out of popsicle sticks, playing air drums, and giving reassuring smiles. He is our very own Patch Adams, and he stood by our side with confidence and support. I had this little boy smiling for an Xray and saying “thank you” despite his pain. Once Charlie felt better, he went for a spin around the nurses’ station in a wheelchair, and I could hear his laugher down the hall. I smiled at the picture in my mind- Charlie and I making it in this life with a man we love.
When we first met him, my boyfriend David, I steadily tried to explain to him that we’d never have a picture perfect existence due to my son’s heart condition. How could he understand though? He wasn’t there for the surgeries…maybe he would leave too. Maybe he wouldn’t be able to handle our baggage: anxieties, fears, and hospital visits (just to name a few.) ER trips are scary and exhausting. CHD and childhood illness aren’t for the faint or weak of heart. They aren’t for normal people. Throughout our stay, several medical professionals asked “Charlie’s dad” questions. Let me just say hearing my boyfriend referred to as my son’s dad is not a picture I ever imagined. Did we correct them? Nah. They have a picture too. One in which the guy carrying a slumped over and pale little boy must be the dad. It’s like being drafted verses enlisting. Here’s this imperfect man choosing to be with this imperfect woman and her imperfect son in this imperfect world, yet the picture was beyond perfection.
This is where I am proud to say I’m okay with living one of the most abnormal lives one could picture and having someone perfect for us to endure it by our side. It’s not the perfection I imagined in my mind. It’s the perfection God granted us, and my heart embraces things that cannot be explained. It’s love at its Finest.
As I listen to the song playing in the background, “Fall on your knees, O hear the angel voices,” (you know…the church scene with Kevin before he offers advice to his neighbor), I’m taken back to the joy that comes with prayer and faith. I have been on my knees begging God for so many things…in the end, whether they were answered to align with my vision of perfection or not, I know God’s plan is beyond perfect. Through this hurt, when I turn to Him, I am made to appreciate so much, and in turn, give thanks and pay it forward. That’s where true happiness lives. So on this Thanksgiving, and every day between now and my last one, I pray that I find gratitude in all circumstances. The upside to nausea? I won’t over stuff myself by gobbling everything on the table. I pray that I see greatness in all the small things (because in the end, aren’t they actually the biggest?) Forced relaxation and Christmas movie watching with Charlie rarely happen with my on-the-go personality…there’s some goodness in being forced to slow down and rest.
Today, I am going to look at the positive and embrace those around me that help shed light and laugher on those scary and unplanned moments because, in those moments, with all of their struggle, I find grace. With all of their fear, I find comfort. With all of their anxieties, I find hope. These moments are picture perfect.
Side note: writing thank you notes helps me remember the goodness in people. It helps me find light in the darkness. So, here’s some light to add to the season:
Dear David, thank you for the handpicked rose, optimism, silliness and courage. Thank you for the to-go throw up bags, patience with the pharmacy, and positive persistence. You are the spoonful of sugar that helps the medicine go down. Charlie and I love you more than all the miles we travel together on this bumpy road of life. Thank you for jumping in our imperfect ride. It takes a lot to navigate our journey, but we always find a way, don’t we?
Dear Grandma, thank you for the super hero blanket and toys. Charlie knows each hospital visit is met with prayers and gifts from you. They’re a celebration of life and a much needed reward for enduring the honor and struggle that comes with CHD.
Dear Wyatt’s mom, thank you for the pedialyte popsicles. They’re keeping us happily hydrated!
Dear Nurse Ed, the ER legend, thank you for a handmade TCH slushie (ice and gatorade), snacks, jokes and excellent care. I’m so happy you got the IV on the first try!
Dear Colton and his family, thank you for understanding our change of plans! We can’t wait for our next round of backyard baseball.
Dear Tuh Tuh, thank you for helping me maintain calm and for helping me forgive my imperfections. I still think I should re-pack our emergency hospital bag, but I already have what I need because with just one word, you’re there by our side. Thank you for all the times you were our ER comedian. Charlie and I could never have too many brave clowns to join our circus.
Dear Charlie, thank you for embracing the hurt with such calm and strength. I know you don’t like pokes, and I know you don’t like the burdens that come with your special heart. However, I see you appreciating the blessings and still living life to the fullest. You inspire me to be better- a picture of imperfect perfection.
Dear God, thank you for the special sort of love and strength that can only come with living an abnormal life. Thank you for the picture perfect moments filled with all of Your perfect love. Thank you for keeping me on the path towards peace and joy. Thank you especially for my little boy.