I am not a victim of my child's chronic disease. I am not. Of course, I would not have chosen this for her. I would not choose it for anyone else, either. Thankfully, however, I am not the one who does the choosing. This is the life I was given and as I look back over the last two years I would be lying if I said that I wasn't wholly grateful for it.
You may be thinking that I'm just trying to sugar coat my life and our situation, but I assure you, that's the last thing I'm trying to do. I merely want to push back against the man-centered idea that going through pain or struggles due to circumstances outside of your control makes you a victim. I will do so by presenting our journey in the way that Joseph and I have been led (not of our own accord) to view it. There are so many truly good things that have come to us through being Shirley’s parents. Below I will describe a few that I feel have been most important to me personally.
I have been confronted by my own helplessness. My complete powerlessness to fix Shirley has given me a more accurate perspective of God. He is not someone that I can just call up when I need Him. He does not sit around just waiting to do what I ask of Him. He does what He pleases and I am at His mercy, not the other way around. His ways are higher than mine His understanding and power is vaster than I can even comprehend. He is to be simultaneously loved, feared and worshiped. He has ultimate power over Shirley's (and my) life. I do not.
My faith in God has been transformed. I would go so far as to say that mothering Shirley has taught me what it really means to trust in God. There is faith in the act of offering up your child, your most precious gift, to the Lord, as you watch her being wheeled away for surgery. Offering her up, all the while knowing that He may choose to take her away. I have learned that trust doesn’t always look like a bold march forward in the face of adversity. Trust, for me, has often shown itself to be a whispered “thy will be done,” through quivering lips. I believe that God is working all things together for my good – our good. But our good does not mean our comfort, it does not mean the absence of pain or struggle. As the Beaver says of Aslan in C.S. Lewis’ The Lion, The Witch, and The Wardrobe, “…he isn’t safe. But he is good.” Those words ring true here.
My life has more depth and meaning. Contrary to what you might expect Shirley’s medical complexities have given my life a richness I did not know existed. Instead of draining my world of its color, it is now even more vibrant. Things that used to matter to me simply don’t anymore. Joseph and I do not have the same shallow struggles we had before because we see the hollowness in them. Why would we waste our precious time worrying about those trivial things? Additionally, everyday tasks like waking Shirley up in the morning, changing her, cradling her small frame in my arms and feeding her, have all become visceral reminders to me that she is a gift. Every beat of her dear broken heart is a blessing from above – and I pray that I never lose sight of that truth.
My focus has been shifted heavenward. Shirley’s diagnosis was initially a gut punch that knocked the wind out of me. But God used it to wake me up to the fallen state of the world. Although I had always known it, I had not experienced it to this degree. Babies should not be born sick. They should not be born already broken. But they are, because our world is sinful and decaying. The truth is, we are all born broken. Shirley’s brokenness is just more obvious. I have a new and deeper yearning for Heaven. A place where all my little girl’s tears will be dried, where she will not need medications and interventions. A place where she will not know pain. I long for the day when she will be made whole, and I will be made whole, too.
There is one more thing, but I do not know how best to define it. So, I will do my best put it into words. Before having Shirley, pain and grief were always separate from joy and Love. Now they are all, in a sense, intermingled. Joy sits as a lump in my throat and a sting in the back of my eyes. Love has made friends with sorrow and pain, and I do not fear them like I used to. It is such a strange and beautiful thing, this dance of love, grief, joy and pain. I know that the greatest of these is love. Perhaps that is the one that connects all the others, and why they are sometimes hard to disentangle, one from the other, this side of heaven.
Shirley has brought so much growth, light, goodness and beauty into my life. She was given to me not because I was the mother who could handle her journey, but because I was the mother who needed this journey in order to be made more like Christ. According to C.S. Lewis, “God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: it is his megaphone to rouse a deaf world.” I was deaf, and God used Shirley to rouse me to my helpless state and draw me toward Him.
Again, I am not a victim of Shirley’s disease. Neither is she. We are, in ourselves, not victors either. We are fellow beneficiaries of Christ's victory over sin and death. His victory over all fallen things, including Shirley’s illness. I can honestly say that I am profoundly grateful for this struggle, because it has kept Christ at the forefront of my mind and has been a constant reminder of my need for Him.
“God has not been trying an experiment on my faith or love in order to find out their quality. He knew it already. It was I who didn't. In this trial He makes us occupy the dock, the witness box, and the bench all at once. He always knew that my temple was a house of cards. His only way of making me realize the fact was to knock it down.” - C.S. Lewis, A Grief Observed
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