Have you ever watched a sculptor work? It’s fascinating. Regardless of material – shrubs, wood, ice, or marble, the process begins on a randomly shaped piece of material with only a vision of the end product in the sculptor’s mind – to be fully revealed upon completion. The sculptor meticulously chisels away any piece that doesn’t look like his end product. Cutting away, what is not necessary, through a brutal and tedious process comes the revelation of some of the most beautiful things.
Last week, we felt the pain of the chisel. Khaleda’s chimerism testing showed that the growing cells are all Khaleda’s. Not Sameer’s. As you can imagine this is another major and devastating blow to all of us especially after what we have been through. Fighting the what ifs and whys. What if we had never done this? Why did God create a match if this is the outcome? What if Sameer had been here the first try? Why did we choose this treatment option? Why didn’t we ask more questions? What if she holds this against us? Why didn’t those cells grow? We had to try – it was our chance at a cure, right? Wouldn’t any parent do the same for their child? And on and on and on in our minds. Finding the words and courage to give such news to your child leaves you numb and literally heartbroken to the core. How can we protect her from this? Why us – why now? How could we come so far and now this? Shaken, empty, afraid, and desperate.
Khaleda faced the news with incredible grace. I marvel at her in a new way every day. One of God’s – beautiful things. Currently, she is showing signs of her own cell recovery for which we are thankful. There were many, many scary days, thinking she would never walk out of this hospital. Now we are closer to the reality of discharge but back to a life with Thalessemia. We are all coming to terms with all that this means. No realization of cure, lots of suffering by all involved, many months lost as a family unit, stress beyond understanding, stomach ulcers, sleep deprivation, chemotherapy aftermath and more still to come. A whole new normal for our family. Not the confetti party that we dreamt of- for sure.
We have found ourselves face to face with situations and questions that most of us walk through life avoiding. It’s been a tough road. We have more intently pondered things like .. What is our purpose? Do I really believe what I have claimed for all of this time in the midst of facing such news for one of my most prized possessions on Earth? Where are we going when this is over? How can I be sure? How do we answer her hard questions about life and death? Shouldn’t she be going to school, seeing movies and having sleep overs at this age. Shouldn’t her biggest problems be geometry? Mike and I don’t get to run and take cover when these questions present. We can’t redirect the conversation or give simple shallow answers. And in an odd way, we are all the more blessed.
Our family is faced with a major life choice. How do we respond to such news? First of all, there is no easy button. Nothing softens the pain and brokenness in our hearts. It’s not at all the outcome we prayed for. It shatters our visions of a healthy future both for our family and for Khaleda. Right now, we are living the spiritual warfare between emotions and intellect. We have spent the last week mourning, reading and praying. And in short – this is what we believe.
God is our sculptor, and He doesn’t make mistakes. He is our Heavenly Father, and He knows what is best even when we are kicking and screaming for a different answer. He sees what we don’t and chisels away what is necessary to fulfill His purpose. His plan is perfect and ultimately for our good even when we see little good from our point of view. Ecclesiastes 7:13 says “Consider the work of God: for who can make that straight which he hath made crooked”. Tribulation, trials and suffering are part of this fallen world. No amount of health or wealth can bring true, pure joy. It says we are made perfect through our sufferings. Trials try our faith for authenticity, pruning us for deeper growth, and refining us to be the purest gold – our final form. What if Joseph had never been sold by his brothers? Something meant for evil that made no sense to Joseph was eventually used to bring him into a place of power to save his beloved family. It was years before Joseph realized the purpose of his misfortune. John Murray wrote that God has forged an inseparable link between sufferings and glory. Our lives on Earth resemble a workshop for the master sculptor. Trials can be His tool for engraving His image in order to fulfill His purpose. The chisel of God has come upon our lives painfully chipping away pieces that do not resemble our final form. This bitter cutting away is building character and shaping us into the “beautiful things” God created us to be. We are confident that all of our suffering is not for nothing. At this moment, we can’t see what will come to pass and for what purpose it is intended.
We will hold fast to our faith as we face each day from here on out. This will not defeat us regardless of the outcome. While we are discouraged, we are not without hope. We have grown individually and as a family. Would we have chosen this outcome? “NO ABSOLUTELY NOT!!!! But we keep living, moving forward, making the most of what we have been dealt, and glorifying our Mighty God every step of the way – even in the midst of the storm. Do not be mistaken, our story is far from over regardless of our circumstances. The ripple effects from the life of this one child have been and will continue to be felt. Much good has already come, miracles have happened, and one day we will understand why today’s answer to our prayer is “no physical cure today, my beautiful child.”
Thank you for your love and prayers. It’s definitely not the time to stop. We continue to have much to be thankful for.
Khaleda and Silas giving treatment to her poor teddy bear.