Some comments I often hear about my daughter, Myka, include:
“She looks so healthy.”
“You would never know anything is wrong with her.”
“It’s hard to believe that she needs a transplant.”
Yep, yep and yep again…. It’s true. She looks totally “normal” and appears to be fine on the outside — she walks and jabbers, she eats (mainly carbs and sugar, but who wouldn’t love that?!), she plays, she cries, and she has the most wonderful belly laugh I’ve ever heard. In every aspect of the word “typical” she appears to fit into the definition.
Honestly, her development has shocked me day after day. In the NICU we were told that there was likely brain damage from the high ammonia levels she had endured, but in miraculous Myka fashion there was none. Being a special education teacher, I might be slightly more aware (jumpy, hyper) about developmental milestones that my children reach, and I am still in awe of where Myka is today. She shows some mild delays in a few areas, but overall she is a happy, fun toddler who gets into absolutely EVERYthing.
But — as I’ve described in previous posts, Myka has a rare genetic disease, a metabolic condition that has led us to today — listed at Status 1B for a liver transplant. So, something about this kid is different and broken on the onside. For those of you have been following our journey, we did have our first “false alarm” transplant phone call last Monday. We were told that the surgeons thought they had a match for Myka, so my husband packed up at work to come home, I packed up a few things (at least I think that’s what I did), and we prepared to go — meanwhile Myka sat in her high chair and threw Cheerios at me. As my husband pulled into the driveway, the hospital called back and said that the surgeon had changed his mind — the donor liver wasn’t the best match for our girl. Here’s a prime example of what this post is about — on the outside I mainly looked like a functioning human being, but on the inside my heart was racing, my brain turned into mush, and I was overwhelmed.
Myka appears to be fine on the outside, but on the inside she. just. isn’t. We can’t help but realize that this is an absolutely perfect illustration of each and every one of us. I can put on a good game, wear a smile and say that “I’m fine” to every person I meet, but inside I might be suffering, battling, hurting… And aside from the masks that we often wear (what are we really afraid of??) — there’s a much deeper issue that we’re hiding. We look at others’ lives as if they must be rosy — for whatever reasons it is that we are envying — but do we know that person’s reality? What are you good at masking? And, can I ask, why?? Maybe it’s hiding behind a fake smile, a cheerful voice, a fancy car, a house, a vacation (don’t get me wrong, there’s nothing wrong with those things!) — we all seem to have the masks we like to wear the most.
The deeper issue of brokenness is a lot like Myka’s condition — on the outside we can seem whole, but inside we are all born into spiritual poverty. Emptiness. Hopelessness. Missing something.
While Myka needs a physical organ transplant, there’s a heart change that we all need. It’s not a feeling, a positive thought, a good vibe, or any type of facade or escape. It’s real and lasting hope. And HIS NAME is JESUS.
The book of Romans, chapter 5 says this in verses 3-8: “We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. For while we were still weak, at the right time Christ died for the ungodly. For one will scarcely die for a righteous person – though perhaps for a good person one would dare even to die – but GOD shows His love for us in that while we were still sinners, Christ died for us.”
THAT is HOPE. By trusting in Jesus — confessing to Him that we have sinned, believing that He died and rose again, and claiming Him as Lord – we gain eternal life and lasting peace and hope. No longer broken but redeemed. Alive. No longer broken but made whole.
As we “prepare” for Myka’s transplant which could happen any moment, I have been thinking of this verse in 2 Corinthians 5:17 – “Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here!” While we await for Myka’s old liver to be gone and a new one to come alive inside of her, I can’t think of a better picture of the gospel — when we trust Jesus, we are new on the inside. By His power and for His glory, day by day, we learn to love as He would love, serve as He would serve, trust in His plans and step by step, we are transformed from the inside out.
I believe these things to be ultimate truth and desire to live my life in a way that aligns with this….but let me be clear that this doesn’t mean I don’t have emotions. God gave us our emotions, and they’re good — but we aren’t meant to live life according to how we just feel on the inside. There are plenty of tears, struggles, fears and worry that come with our situation right now — ones that I wish were very different. I don’t enjoy thinking every night when I rock Myka, “I wonder if we will be rocking tomorrow night. Maybe tomorrow will be the day. How long will we be away from home? What if things don’t go smoothly? Are we making the right decision for our baby?” Very quickly those emotions can take hold of me and disturb all of the things that I know to be true and real — they can put me on a roller coaster that doesn’t involve peace or trust. I’ve ridden it enough times to know that feeling the emotions is ok – it’s natural – but I must not let them control me. On the inside, I CAN experience PEACE and JOY even on the roller coaster that we are riding.
We are so quick to believe what we see on the outside when the inside may be telling a story that is polar opposite to the appearance. My sweet baby may have a lot to learn in her lifetime, but this mama is sure learning more from her than I could have ever dreamed. I wonder how I appear on the outside? Some say I seem to be handling things well or am even (dare I say it?!) — calm (HA!) — but only God knows where my heart is. It’s a moment by moment deep breath of choosing to trust. How do you appear on the outside? What might you be hiding behind or hiding from?
And, most importantly, dear friend — what do you see when you examine what is on the inside?
Psalm 139:23-24 –“Search me, O God, and know my heart! Try me and know my thoughts! And see if there is any grievous way in me, and lead me in the way everlasting.”