Fluffy Poofy Faith
by Lara Lee
James 1:2-4 (ESV) Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.
Life is hard sometimes, like being run over by a train driven by a half-drunk Irishman in a bad mood and then getting backed over by the same said train for good effect. I had one of those times, and I am sure you have too. If not, wait, it's coming.
God had a sense of humor when he made me the mother of a special needs child, not because of my son's limitations, but because of my own. You see, I thought I knew everything there was to know about being a Christian before he was born. It's so easy to know everything about life when nothing terrible happens. My oldest son's life rocked my foundation and taught me that my faith had just been the fluffy-poofy faith that mimicked the fluffy-poofy dresses of my protected childhood.
Do you remember those dresses? The cotton ones moms sewed out of some flowery patterned fabric. The ones with the big sleeves and dripping in lace, topped with a massive bow in one's hair. The only place I knew anyone wore dresses like that was in church, especially for Easter and Christmas. Ordinary people wore spandex, leg warmers, and scrunchies (that was the 80s for those too young to remember). The fluffy-poofy dress has become the image of my church-self in which everything looked perfect and predictable.
Like many in the church, I KNEW how God was supposed to work, and my son's disability didn't fit in my expectations. After all, I had grown up in the fertile 1980s mega-church culture with Bible quiz, Bible bookstores, Christian t-shirts, fluffy-poofy dresses, and Psalty the Singing Songbook. I attended a small church school with a Victorian British missionary principal straight out of the pages of a 19th-century Gothic novel, complete with uniforms and Bible-thumping. I was a youth group kid in the 1990s, doing human videos to Carmen and Michael W. Smith. I horrified my mother by declaring that I was called to be a missionary and die a martyr, all while obsessing over the Foxe's Book of Martyrs. I ran half-way across the country to attend a Christian university, to debate with the theology majors, and to nab a theologian for a husband. You see, I was the ideal Christian. No horrible sinful past. No rebellious teenage stage. I was faithful.
All my spiritual self-confidence evaporated while my husband and I lived in Edinburgh, Scotland ten years ago for him to get his Ph.D. After four years of infertility, my oldest son was born at 23 weeks gestation as a micro-preemie, a month after my mother died from brain cancer. My baby boy had a 10% chance of surviving birth and then a low chance of making it out of the hospital. After four months in the intensive care neonatal unit, we brought him home with his oxygen tank best friend that he hated with all his tiny passionate heart. He used his limited ability to continually pull off his nasal oxygen cannula for the sole purpose of giving us mini heart attacks in the middle of the night. Cue the horror and gasps from the audience when I tell them that we opted for co-sleeping to prevent the said heart attacks and panic.
My son continued to show improvement in contrast to what was foretold about him at birth by the all-knowing medical community, but, at the same time, he also was diagnosed with autism and various other serious problems. Cue dramatic music and Autism Speaks' chorus of despairing mothers who declare life as being functionally over as they shoulder their martyr's badges in pride. All of this happened while our home and finances in the USA were falling apart.
Whenever a parent is given a diagnosis about a severe illness or disability for their child, they often go through the stages of grief. We were no different. The emotional impact of being told our child will live the rest of his life with incurable hardship that I as a parent can do next to nothing to fix rocked my faith as much as the life and death struggle of his birth. How do I make this better?
How were we to cope when our life laid in ashes around us?
My advice is to learn to laugh.
"Count it all joy" from the verse above probably doesn't mean developing a sense of humor about your trials, but for me, that is what I needed to live and grow... to even survive all of it.
I had been a serious Christian who had life figured out. Have you been there? I didn't laugh at much. Life was too serious to be silly. I had a life plan in which all my children would be perfect in the ideals of my tidy categories. I had researched all aspects of my dream life, and I knew exactly how to deal with finances, budgets, life, death, and struggle, but suddenly, my life didn't fit any of the boxes and categories I understood. Life became messy, and God didn't make sense. I had no boxes for the struggles my son was experiencing, and I dove into a pile of books to understand my new reality.
At first, there was the denial that this diagnosis was that serious or that it would last. Then I saw my child being unable to communicate to me by the time he was three years old. He could hardly be in the same room with another child without massive anxiety. I saw my child struggling every day doing typical tasks for his age, and it started to sink in that life for him was just hard. Family and friends, in an attempt to comfort me, said things like "he will grow out of it," and I wanted to believe them. Even complete strangers would tell me stories about a child just like mine (except every part of their disability was different) who was completely normal by the time they were a teenager (except that they weren't) and that they were able to accomplish a small task like spelling their name by the time they were fifteen. The "comforting" story would then devastate me for a few months until I realized that these people who told me this story had no idea what they were talking about. Fear grew in my heart that my child must be "cured" to be happy and contribute to society. What can I do to fix this?
This crisis, among all the rest of what was happened to us, cracked my foundation. Have you been there when life was just too hard?
Then anger took over. Why did God do this to my child? What about the scripture in Matthew 6:9 that says "What father, when his son asks for bread, gives him a stone? ... If you then, who are evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those that ask him!" How was this God's love? Didn't I deserve better? Didn't my son deserve better? Have you ever said these words in your darkest days?
I had known God, and he wasn't supposed to do stuff like this. I didn't recognize this "new" God who allowed horrible things to happen. I was good. My son was innocent. What kind of God does this to his own people?
A loving God. (Romans 8:38-39)
A God who makes no mistakes. (Psalms 18:30, Romans 12:2, 2 Samuel 22:31)
A God who knew what kind of son I needed, and what kind of parents my son needed. (Esther 4:14)
A God who can see the future and has a perfect plan. (Jeremiah 29:11, Romans 8:28)
A God who loves even the sparrow. (Matthew 10:29)
You see, disability is NOT the worse thing that can happen to a person (2 Corinthians 4:16). Strangers may look on with pity, but they don't see the gifts of love and hope and joy that can come with the trials. Today I would not trade my son's unique personality for anything. I still pray for life to get easier for him, but his contribution to the world, MY world, is irreplaceable. He was specially formed by the hand of God just as he is (Psalms 139:14). He is no accident (Ephesians 2:10). He is not a mistake of God's creative power. My son sees the world in a way no one else does or can. I am excited to see what he will do with his gifts.
I am actually grateful for that time of hardship in Scotland because I made good friends, saw the love of God in our new church, and learned so much about myself and the world in general. That doesn't make bad things suddenly good. My mother's death was too early and devastating, but God redeems everything. He will redeem the devastation in your life too. That doesn't make your trial less awful, but it does have a purpose, a meaning, and a light at the end of the tunnel that isn't another train coming to hit you when you are already barely holding on.
The fruit of my struggles have matured my flimsy faith to a more solid faith and trust that God knows what he is doing(Psalm 119:71). It stopped being about appearances and the Jesus junk of the 1980s. God allows hardship so that we can participate in the struggles he went through on our behalf (Philippians 3:10). After seeing my son's life and death struggles, little in life mattered but the grace of God to be with us in the fiery furnace (Daniel 3:16-18, Isaiah 43:2). I needed to learn what real faith was. I learned to pray when I had no hope while the possibility of my son's death was before me for months at his birth. After God had not spared my mother's life, I had to decide to trust God with my son's life a month later whether or not God chose to spare him.
Because there was nothing else I could do. I couldn't save my son myself. I discovered I wasn't God (I would have been the Monty Python style god with cardboard cut-out lighting bolts to shoot down on anyone who annoys me). I had to hold on to God on days when I didn't have the strength to do it myself (Isaiah 40:31). I had to find out what it meant to be a Christian when life stopped being easy. My son's continued struggles, just like all our struggles, will also develop his faith too. When I reached the very bottom of myself, God was there (Philippians 4:6-7). He re-built my foundation and my faith on something firmer than my simple expectations of a predictable God (Hebrew 6:1). My faith became blind knowledge that even though I didn't understand God's cosmic plan, I was still happy that he was there anyway. I stopped playing God in my own life, the game I had played in my youth in which I would try to fix everything my way and then give God lip service (the puppet god as I have come to think of it). I learned and saw that life and death were out of my reach. I learned how to see God's authentic hands in my life doing what I could never do.
It was during my darkest days that God taught me to laugh by first laughing at myself. I and my fluffy-poofy faith learned that God was much bigger than my pre-conceived notions. He was big enough for me to scream at and to tell him the truth of how I felt (gasp!). He was big enough to know what was best for me when I was sure he had abandoned me. God was bigger than my pat theological answers and formulaic view of his way of dealing with the world. God grew bigger when I stopped being able to control him. My faith is much stronger because of it, and one day, when God is through, I'll see the full effect of his work in my character (Philippians 1:6). I haven't arrived at the end, but the value of losing the fluffy-poofy faith is a priceless treasure. It will be the same for you when you reach the end of your struggle.
Yes, God had a sense of humor when he made me the mother of a special needs child. He knew how much I needed my son. Now I can laugh because of the journey he brought me through. You too will be able to say: "Strength and dignity are [my] clothing, and [I will] laugh at the time to come." (Proverbs 31:25)