Friday, March 22, 2019

Not my will, but yours be done

Such hard words to utter, even harder to believe and put my full weight into. Its been a wild 2 months since my diagnosis. I have vacillated between full trust and gratitude, to grieving loss and wondering how my life will look at each stage. All the while, amazed by God and how he has sustained me and given me perspective and hope that can only come from him.
I got a call Wednesday that my gene results had come in. This was 2 weeks before I was expecting this call. I thought the days waiting for that call would be consumed with anticipation, but it was quickly pushed to the back burner of life and I occasionally wondered what would come of it and prayed that my gene would be identified and not one that hadn't been discovered yet.
As the kids got in the car from school Wednesday afternoon, an unknown local number called, which I typically ignore because I get so many telemarketing calls and the kids had just gotten in the car and were excitedly telling me about their day. Something inside prompted me to answer and sure enough it was my genetic counselor asking if now was a good time to share results. I was almost home so I parked on the neighborhood street and told the kids to get out and walk home as I pulled over to take notes. She mentioned the gene was found with certainty and I was beyond thankful. Then she told me, "your Retinitis Pigementosa has been caused by the gene USH2A". I have researched RP just enough to know that Usher's syndrome can be part of a diagnosis which also causes permanent and complete hearing loss. My heart sunk. Immediately life flashed ahead and I thought of trying to live life not only blind but also deaf. Those few seconds before she spoke again felt like minutes. She then explained that there are 3 strands within this gene and 2 of mine are "pathogenic" or disease causing, but my 3rd strand was intact, and that is the strand that causes the hearing loss part of the disorder. So there was absolutely no chance of any deafness progressing in my case.  One strand. One tiny part of a gene that was amazingly unaffected by the other two damaged strands. Miracle. She continued on to explain what this means for me and how people with this gene typically progress. The good news, she shared, was that this is a fairly common type of RP (10-15% of people with RP have this gene) so there is a lot of research for gene therapies being done with a sense of urgency. The other great news was this gene is recessive, so the kids would only be carriers, they would not get the disorder unless John had the same damaged copy of the gene and was a carrier and that was similar to a one in a million chance. The not so great news was that this gene is adult onset (obviously) but much quicker progressing than several of the others. In many other genes, complete loss of sight happens in your 55-70 year range, but this gene most people experience loss in their 40's. This felt like a punch in the stomach. I had spent the past 2 months accepting the fact that I would lose my sight just after the kids left the house, that my retirement years and grandparent years would be impacted, but just slow loss before that. This was new. It felt like a new diagnosis all together.  She mentioned how in that range my sight would go down to a 5 degree visual field (basically a pinhole) and even that would be blurred. 
She assured I would never go into "complete darkness" which is what most people assume blindness means, she said I would always be able to identify if it was sunny or night, if a light was on in a room or not, but that I would not see objects or faces, it would only be the contrast of light and dark. 
I sat stunned but typing each thing she said so I didn't forget. She said I would not notice weekly or monthly deterioration but probably every 6 months I would notice another layer of loss. There's obviously variation, even in the people with the same exact gene causing RP, and some people who are outliers that keep their vision longer and some that lose it even sooner. I checked out as she mentioned resources the county offers with learning to use a cane, disability and so forth. The message that shouted loudly was 'I am going blind, sooner than I thought by about 15 years'. I looked ahead and could see the kids playing in the house and getting their snacks. I wondered how much time I had left. My forties are just around the corner. 
That night I clicked into "go mode", sharing the info with family and picking up kids from practice and cooking dinner and helping with homework. I processed a little with John that night, but it still felt surreal, distant and unbelievable. The next morning I woke up and opened my eyes and it started to sink in. I was teary as I packed lunches and drove to school, I was teary as I drove to my workout, flooded with thoughts. My mind raced and I battled with trying to put truth over the lies and uncertainties I was hearing. I left the gym and got a text congratulating Reese for a great win at the state gymnastics meet and that she was surely headed for a college scholarship with such talent. I lost it. Right there on the backroads by my house I sobbed my way home. All of the what if's were becoming real. Would I even see her compete in college? How many more years would I get to watch her do the sport she loves? My plans of what the next 5, 10, 15, 20 years would look like felt shattered, uncertain, and laced with a ticking clock looming over me. I do not want to live this way. I do not want to evaluate my life in 6 month chunks anticipating the next layer of loss, wondering what I won't be able to see next month that I can see now. I begged God to take the clock away. And then verses flooded my mind. Psalm 90:12 So teach us to number our days, that we may gain a heart of wisdom. Job 42:2 I know that you can do all things; no purpose of yours can be thwarted. Job 23:13-14 But he is unchangeable, and who can turn back his plans? What he desires, he does. For he will complete what he appoints for me, and many such plans he still has in store
This is not out of God's control, it is surely out of mine. As I have reflected on this, I think we often make plans as if we are entitled to tomorrow, next year, the next decade. We know death could happen at any time, but we live as if we will have long healthy lives with no pain or suffering. This is just not true. We live in a world that is literally unraveling, deteriorating, if I use the word she correlated with my sight. What we see is wasting away, our bodies are as well. I am not entitled to tomorrow. I am not entitled to my sight. I am not entitled to a  comfortable easy life. I wrote this post almost exactly two years ago. In it, I included this quote from Jay and Katherine Wolf "Do you want the gifts or the giver? Do you want deliverance from suffering and discomfort or do you want the Comforter himself? We believe the lie that if you follow and obey God into discomfort and out of what is "safe" then there will be blessings and reward for you and things will go well...but instead you've entered into discomfort and you're finding it's your new normal. How can suffering and joy coexist? In suffering, there is a death to life resurrection we get to witness, a picture of new life. In suffering, we anchor ourselves in the assurance of hope and joy in Jesus not in our circumstances. In American Christianity, we have bought into the lie that if it is good, then it cannot be hard. That goodness must exclude suffering. This is not true. In Jesus' upside down gospel good and hard totally coexist and weave together for our goodness and his glory"
 God help me to live in light of eternity. Help me to see this as a light and momentary affliction. Help me to live in gratitude of each moment you have given me as a gift of grace I do not deserve. Help me to suffer well. Help me to say, "not my will but yours". 
I am so amazed at the Psalmists in the Bible and even Jesus himself. God is not offended or put off by their cries for help. He welcomes it. Want to complain? Go for it. Wish it wasn't this way? I understand. Think its all too much? You can't see the whole picture. I am so thankful for the way God deals tenderly with us in suffering. I definitely had a huge ugly cry to him yesterday. Not this, its too much, its too soon, its not what I thought, but I want to see this, this and this, God bring a cure, give me your eyes to see this with. And there was comfort in that and peace given, and there was truth replied with, and tenderness. He holds it all together. Not a hair falls without his allowing it. My sight is under his complete control. He is a good father who withholds NO GOOD THING from his children (Psalm 84:11). Even pain in his hands is for my good, others good and his glory. He is not withholding my sight. 
A few weeks ago I was driving and praying and singing. I saw a picture in my mind of me walking blindfolded in front of the most beautiful landscape. Jesus was behind me, leading me and gently directing each step. I got closer to the rolling hills, deep canyons, beautiful mountains. And then he took off the blindfold. God is not taking my sight from me, he may allow blindness, but it is only to enhance and heighten my experience of him, of life, and of heaven. It is a gift he has entrusted to me. Just as I would blindfold my children and keep something amazing a complete surprise from them, he does with me. So God it is hard, I may want it a different way or not so soon, but I trust you. I even trust a blindfold in the hands of my good, perfect Father. 


  1. Kylie, I'm so very sorry. I cannot even imagine all the emotions you must be experiencing but I can say with certainty that you sharing this journey with people is advancing the kingdom in mighty ways. Spurring other believers to trust in a loving Creator despite fallen circumstances and showing others how to have hope in the midst of pain. So very proud of you!

  2. "If any man would come after me, let him pick up his cross and follow me

    You must be in flesh to perfect your body, mind, and spirit to not be of this world. Few seems to be true in self only not a group partiicipation.