Exactly three years ago today we were preparing our hearts for Malachi’s second brain surgery. He had finally passed the 5 pound mark that was required for the procedure and Jake and I were experiencing conflicting emotions of joy and dread. While we hated the idea of Malachi having such a big surgery, we also recognized that necessity of the machine they would be placing into his brain.
Sometimes as parents we are forced to make decisions that are in the best interest of our children…even when they could cause pain…knowing that it will bring about healing in the long run. Our journey has been filled with these moments, and knowing you are a huge part of the pain your child is suffering can bring about so much guilt.
I think back to the 5 month casting process for Malachi’s legs, as I held him down each week for them to wrap his legs in painful positions. I think about the infantile spasms in which we had to give Malachi steroid shots twice a day, knowing that the medicine was changing his personality and temperament, but also knowing that it was the only way to stop the seizures that were damaging his brain. I think about the many blood draws, surgeries, catheterizations, and hospital stays where Malachi’s comfort took a back seat in order to do what was medically necessary for his little body.
But it is through these horrific experiences that I have been able to witness a very important lesson…
Sometimes discomfort is necessary to bring about true healing.
Without all of the painful events I have described above, we would not have had the chance to know our spunky, silly 3 year old warrior. Malachi’s pain, as hard as it was to witness, allowed his body to overcome.
As I dwell on this thought I can’t help but make the same comparison with our heavenly father. Sometimes when trials come our way we are overwhelmed with the stinging pain that often accompany them. Our unmet expectations. Our confusion. Our fear of the outcome. Pain is often quickly associated with negativity. But we must remember that pain can bring about some marvelous things.
This week I was able to share Malachi’s story with a group of women at a local church. Whenever these opportunities arise, I gladly accept and trust that God will bring me the words He needs them to hear. My prayer is simply to be used as His mouthpiece. As I prayed over this event, the words “Refiner’s Fire” continued to come to me. And after doing some research I realized why.
1 Peter 1:7 “These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold- though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor the day when Jesus Christ is revealed to the whole world.”
In biblical times, a refiner would place natural ores into a crucible, which was simply a firepreoof pot. He would send this pot into the fire and as the contents melted, impurities rose to the surface. The refiner would take these impurities (known as dross) and scrape them off the top. But he didn’t stop there. He would send the pot back into the fire, increasing the heat because different temperatures would bring different types of dross to the surface to be removed by the refiner. This process would continue over and over (up to seven times as read in Psalms) until the pot was free from impurities.
As I read into this process the Lord started to show me the dross that has come to the surface through our current trials. He reminded me of my pride and arrogance before Malachi’s birth when I relied more heavily on my own wisdom than that of the Lord’s. He reminded me of my moments of doubt, even after His constant reminders that He was healing my son. He reminded me of my current dross that is still finding it’s way to the top…my discouragement, my anger, my worry.
And as I looked back at the pain we have experienced in Malachi’s three years I see the ways in which God has been working so steadily on Jake and I- like the patient refiner. While we have been in the fire, He has been watching anxiously, waiting for the right moment to bring us out of the heat and cleanse us from another heavy burden. And our heavenly Father does not delight in our trials and pain, but knows that it is sometimes necessary to bring about something greater than our minds can imagine.
I don’t know what trials you are experiencing, or what in your life is causing you pain. But I hope that you too can look forward to the other side of your fire, knowing that you will come out purer and more refined than when you went in. I pray that you too are able to put your faith in the refining process.
Malachi has had a wonderful week. He is continuing to surprise us with his improvements, as minor as they may seem. This week we have tested our comfort zone and tried taking him to things that were previously off limits due to his complexities. On Saturday, for example, we embarked on a full day of activities which is something we have never before attempted. We were out the door by 9:30am and returned around 7:30pm, and he handled it like a champ although he did show us he was enthusiastic about finally being back home.
Jake and I have laughed this week as we talk about children’s reactions to Malachi. Typically 1-2 year olds see him and will refer to him as “the baby”. 3-5 year olds don’t seem phased by his differences and are very curious, coming over to touch his shoes or chair. 6-7 year olds tend to be terrified of him and avoid us at all costs, and 8+ have lots of questions which we gladly answer. Jake got to witness his first “100 Questions” session this weekend at a local children’s home. One of the residents was an 8 year old girl who was simply captivated by Malachi. She stared at him for over 20 minutes asking question after question and seemed satisfied with each of our answers. I love moments like these because I know that the next time she meets a child with leg braces or a wheelchair her mind will register that it isn’t such a scary difference after all.
Speaking of leg braces, next week will be heading to Vanderbilt to meet with Malachi’s orthopedic surgeon. His legs are very complex as his hips are both dislocated, his knees are dislocated, and his feet are both starting to pull upwards and out again. Cerebral Palsy can wreak havoc on ligaments and joints and solutions are not easy. Jake and I have to make some major decisions about surgeries in Malachi’s future, many of which will cause him immense pain. His legs and joints continue to be a significant prayer need.
I am also asking you to pray for Malachi’s digestive system and stomach. His body is constantly creating burps that get trapped in his stomach. This trapped gas sparks his seizures and is something we combat daily, all day long. He lacks the stomach muscles needed to burp on his own. While I am still able to physically help him get his burps out, that window is slowly closing and pretty soon he will be too large for me to burp successfully. This issue is also the main reason that we cannot leave Malachi with others for any length of time. It is also one of the common reasons he wakes up in the middle of the night. We need a solution…we need a miracle. We have tried many methods and medicines for this issue, and I have even ordered herbal supplements from Germany, desperately trying to find an answer. Not only will a solution solve stomach issues but it will also decrease his seizures tremendously. Please join me in prayer over his little tummy.
Thank you again for taking the time to check on our Malachi. And thank you for your patience as I continue to learn how to wrap my thoughts into a concise blog.
Jake, Leah, and Malachi