Over the past year and a half, my husband and I have been told that something is missing within our youngest daughter’s body. Just one tiny enzyme isn’t there – an enzyme that is crucial to metabolizing protein. It sounds small – can’t they just pump a fake enzyme into her and fix it? We’ve been asked that question, and I wish the answer was an easy yes! However, that one missing enzyme means that our Myka Joy has a genetic disorder called Methylmalonic Acidemia (MMA). Her body doesn’t produce any functioning forms of that enzyme, so her subtype is MUT-0. It’s totally missing.
Can I briefly share how Myka Joy’s life began?
Myka Joy, was born full-term via c-section on January 30, 2015 at a local hospital. The first few days seemed great – nursing well, sleeping well, etc. On day 3 of her life, her temperature dropped, she refused to eat, and her breathing was labored and visibly wrong. She was transferred to downtown Pittsburgh to West Penn Hospital and then straight to Children’s Hospital of Pittsburgh of UPMC for prompt medical treatment for a metabolic crisis. She was in an acidotic coma, fighting for her life. The breastmilk she had eaten had literally turned into poison and toxins in her blood. She needed dialysis of her blood and had a line surgically placed to do so. My husband, Richie, and I found ourselves in the cafeteria of Children’s Hospital on the phone with a doctor in the NICU giving verbal consent to life-threatening procedures to try to save our newborn baby.
I will never forget the exact table where Richie and I sat that evening. We both sat there, weeping, trying to wrap our minds around the thought of losing the baby we had just held for the first time three days earlier. In Joshua 4, we read about the Israelites placing stones of remembrance to mark the place where God had held back the waters of the Jordan River to allow them to pass on dry ground. That table in the cafeteria of Children’s Hospital is our stone of remembrance. It marks a place of surrender in our lives that will never be forgotten. While I know that I have prayed prayers of surrender to the Lord in my lifetime, I’ve never been as fully surrendered as in that moment, when we prayed and made a decision that from that moment on, whether in Myka’s life or in her death, that we would give Him praise and glory for the life He had given her – no matter how long or short it was.
We praise God that He used the doctors and nurses to make quick decisions that evening. We ended up in a small, private waiting room with doctors coming in and out for hours trying to explain things to us, get consent for more procedures, and update us on Myka’s condition. Thankfully, after two rounds of dialysis, she started to stabilize. We were told bits and pieces of what her condition was and what it looked like. Over the course of several days in the NICU’s most intensive treatment areas, we learned that Myka has a genetic disorder affecting 1 in 80,000-100,000 babies and that she was born without a functioning enzyme needed to break down certain amino acids in protein. After almost 3 weeks in the NICU and the placement of a G-tube, God allowed us to bring Myka home to begin to learn how to care for her and her ongoing medical needs. We praise Him for His faithfulness to us in giving us the precious gift of life.
The Friday morning of my scheduled c-section, I read Deuteronomy 31:6 – “Be strong and courageous. Do not fear or be in dread of them, for it is the Lord your God who goes with you. He will not leave you or forsake you…” and Isaiah 40:31 – “But they who wait for the Lord shall renew their strength;they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.” I wrote in my journal these words, “We will be exhausted, but He will renew our strength.” I had NO idea what we were about to enter into, and am glad I didn’t. (Isn’t God gracious in NOT allowing us to glimpse into our future?) I was anticipating being tired and even fearful just with having a new baby, but God was preparing my heart for something greater, something harder. He was also planting Isaiah 40 in my mind and in my heart and drew me back to this passage over and over again in those first few weeks of Myka’s life.
Myka has something microscopic yet profoundly significant missing in her physical body. It affects her daily life, has resulted in dozens of doctor’s appointments, surgeries, numerous hospitalizations and means that she will undergo a liver transplant in the next year to hopefully reduce the devastating effects of the acid in her body. She has something completely missing. What is missing in your life? There’s something… it might be a significant other, a spouse, a child you long for, more money to cover the bills, emotional voids left by crises or lack of nurturing love, desire for peace or understanding in an unsettling world filled with pain….the list goes on. When is seems that our focus is consumed by what is MISSING, we must KNOW WHO GOD IS.
I have often in my life muttered quick prayers like, “Thank You that You are in control, God.” But I don’t know if I often thought about what I was praying or really even meant it. Through those first weeks of Myka’s life, I learned that God IS in control. Richie reminded me that God was not surprised by the situation that played out with Myka. HE was not caught off guard or shocked. He had, before time, ordained and allowed everything to happen in Myka’s body. As I continued to read Isaiah 40, this part kept leaping off the page:
Isaiah 40:25-26 — “To whom then will you compare me, that I should be like him? says the Holy One. Lift up your eyes on high and see: who created these? He who brings out their host by number, calling them all by name, by the greatness of his might, and because he is strong in power, not one is missing.“
How mighty HE IS, how small we are. How quickly we are here and gone. I STILL question in doubt and pain, “God, WHY didn’t you just put that enzyme in Myka? Surely that wouldn’t have been too hard for you to do!” In those moments, He has taken me to verse 26 again and AGAIN and AGAIN. If He knows the stars by name and not one star in the universe is missing according to His plan, then not one miniscule thing is missing in my Myka according to His plan. Nothing is missing in your life that Jesus cannot fill. He is still good. He IS in control. NOTHING IS MISSING.