The body remembers...

7 years today I held my 12 pound one year old son in my arms for the first time. I met my shy, scared 4 year old. I can bet you neither of them remember the date, but their bodies remember. A brain somehow etches into permanency the trauma of adoption. So many people idealize adoption, and while it is beautiful, it is tragic, it is trauma, it is devastation. I cannot imagine being a 4 year old and being told, "Go, this is your mama now". That is all Maran was told in her language. She had not seen a white person, she had not heard the English language, and in the orphanage, she hadn't been caressed or changed or tucked in. And now here is this woman and man she has never seen that are doing these things. I cannot imagine the fear and confusion. The mind may forget the details but the body remembers.

This month has been hard, plain old hard. Trauma rears its ugly head in whining, attitude, discontentment, anger, uncontrolled outbursts, lashing out with words, and regression. Bed wetting, sibling arguments, ungratefulness, negative attitudes. And when you bend down and look in their eyes and say "This isn't you, whats going on in your heart?" The response is I don't know. The mind can't put it all together at this age I guess, but the body remembers. The body remembers leaving the orphanage, the place where 4 "mamas" cares for 35 kids, where one meal a day was all you got, and even that was often sautéed leaves and worms and a ball of dough called Fufu. The orphanage was the place where 6-8 kids slept on a queen mattress on the floor, where they would bring a bucket in at night and you would sit your bottom on the edge of it and go to the bathroom before bed. The orphanage was the place where the older kids would target the younger to take their one meal a day because they could push a baby out of the way to get a double portion, the scar still protrudes on Levi's head to prove it.

I can't believe it has been 7 years. Part of me wondered if at 6, 7, 8 , 9 years home that they would forget the painful memories of trauma, but the body doesn't forget. Doctors say continued hunger and malnutrition in the first 2 years of life creates a trigger in the brain that can rarely be reversed. Food equals nurture from that day until forever, which brings its own set of issues. Food is intensely triggering during these periods of grieving. This year for my child's birthday I got the most special breakfast, I brought their favorite treat to school to share with friends, I had an expensive rare treat waiting for them as an after school snack, I cooked their favorite dinner and dessert that evening, but it wasn't enough. Why didn't you do this mom? Why did I not get celebrated enough mom? It is a vacuum that cannot be satisfied. It is exhausting and so hard to parent through that from a place of patience and compassion.

I think the hardest part about walking with someone through grieving is when grieving doesn't look like grief, it looks like anger, apathy and irritability. Give me tears and "this is hard" and I am there by your side echoing your hardship and comforting and affirming. But the alternative form of grieving stirs my default reaction of stress, frustration, impatience and a lack of compassion. I am trying to take a step back each day and ask God for just what I need for that day, not get afraid of the future or how long this will last, but just enough grace to give my kids for today. I ask him for eyes to see their regression and anger with compassion, because it stems from them sensing that their world is not as it should be. And that is a true assessment, it is not how it should be. No kid should lose their first family.

But as I tell them as I tuck them in, 'our family is forever', 'it is ok to be sad and mad', 'mom still loves you and always will no matter your behavior', 'I am sorry I got frustrated with you today, that was not kind of me'. Affirmations, apologies and vulnerability do go a long way in the midst of grief.

As I am learning from my diagnosis, people don't tend to do well when there is no "end" in sight to suffering, when there is no promise here on earth that this will tie up with a pretty bow and you will just say "Wow wasn't that worth it all". Not here, no. In heaven, all the sad things will come untrue and all of the suffering will appear as a brief second in time that had complete purpose filled with love and intentionality.  But in the meantime we will put one foot in front of the other, love when we don't feel like loving, ask God to help us to endure well, and enjoy the lives He has given us. Happy 7 years together to my sweet treasures.

Certain Uncertainty

So during the time of all of my eye diagnosis, we have had other kids receive an  educational diagnoses and one going through a time of worry and stress (and John started his MBA, because of course there can't be only ONE big thing going on at the same time;). One of my kids has been seeing a great counselor to help process and learn how to handle stress. We have helped at home as much as we can, but with what I am going through currently, I decided now was a good season to outsource that discussion to a wise counselor! After the second or third session, she came home with a picture. The counselor, who is trained in both counseling and sports psychology, told her that athletes performance and progress comes in waves, you progress and then you plateau and go back into a learning or struggling place until you get another skill and your progress is on an upswing and so on. She told her that your emotions shouldn't "ride the waves" of your progress. Your feelings about yourself shouldn't follow the pink line of your peaks and valleys of performance. She said we want to work on getting you to this green line, your emotions are going to struggle as you have victories and defeats but they should only move minimally because how you feel about yourself shouldn't be dictated by your performance. Ideally, you would follow a straight line, the black line, and your feelings about yourself and confidence in who you are wouldn't be moved by your circumstance in your sport or at school or with what is going on in life.

Now this counselor is not a Christian counselor, but she revealed a Biblical truth to my daughter that I have been trying to teach her since she could walk. And bringing this lesson back up at a time in my life where there are some pretty big waves of disappointment, struggle, and shock was pretty timely for me as well. You see, I don't want to "ride the waves" of this diagnosis. I don't want every appointment to knock the wind out of me and put me down on the ground of despair or feeling crushed. Is it hard to hear bad news? Yes. I posted this just the other week. 

Another tough week of news about my diagnosis. A substantial amount of progression since 6 weeks ago. Talks of the doctor saying I may need to give my license up in the next few years. A line gone on the eye chart that wasn’t supposed to happen until later. A huge amount of vision gone in my peripheral with staggeringly small numbers remaining. This is news. Bad news. Heavy news. But still just news. “But what I have access to is a truth that transcends news. The restoration that is impossible with man’s limitations is always possible with a limitless God. Truth is what factors God unto the equation” -Lysa Terkeurst "It doesn’t  have to be this way". 
 I’m clinging to that truth as things start to fade or surprise me throughout the day. I’m enjoying another sunset, another blue sky day, my kids faces, but those things are not ultimate. He is. The man who gave up his very life so he could call me daughter. He is truth. The truth that he journeyed to a cross and was tortured so that I could have spiritual eyes to see him. The truth that he conquered death and then extended me an invitation to life, to really live, sight or no sight. That truth is worth it. And even though the news feels big and sad, he’s better. He’s steady. He’s good. He’s with me. And that truth carries me through. “He is not afraid of bad news; his heart is firm, trusting in the Lord. His heart is steady; he will not be afraid”

Psalms 112:7-8a #letitbetrueofme

Big news is hard to handle and process and it can be sad and overwhelming and frustrating. I didn't want to hear that I may lose my ability to drive in the next 2 years or so. I didn't want to hear that it is progressing faster than they thought. That is a low point. But I don't want my feelings about my life to fluctuate with my circumstances. It is ok to grieve and be sad, and I have definitely had those days as I think of what I used to think the future would look like and what it may look like instead very soon. But bad news doesn't have to equal despair. It can hurt but it doesn't have to consume and crush. Jesus is my straight line. Because my identity is rooted in Him, I don't have to ride the waves of my circumstances. I can stay relatively steady as these waves come and go because what he says about me is TRUTH and this is just news. I am not the equivalent of my abilities or my sight. I am a daughter of God, who Jesus died to save, who is promised that I am upheld by an unchanging, unshakeable God with limitless wisdom and power. He is my straight line when my life is hard. He is  my straight line in victory. I look to him when I fall because he picks me up. I look to him when I succeed because it is Him in me that gives me any victory I may have. He is steady when I am not. He is unchanging when I feel like I'm blowing in the wind. He says I am enough, loved, able, powerful, treasured when I feel otherwise. 

Our pastor spoke this Sunday on root idols that cause our hearts to stumble. The four being Power, Control, Approval, and Pleasure. Power says I can do it on my own and I can succeed. Success is what drives me, my performance is what matters, I just need to be better than the person next to me. Control says I need things to happen my way, I can put in the right work and I should get the right result, things should go as I dream or as a plan. Approval says What people say about me is ultimate, I don't want for people to think bad of me, I don't want to feel low, I want to feel liked and accepted at all times. Pleasure says I deserve this good thing, I deserve happiness and comfort at every turn. I will go after my own ease and comfort because that is what life is about. These things are the root of so much pain and deceiving about what life with God can be. As I processed these, I know Control is my biggest struggle. I want things to ultimately work out like I hope they would. I want to parent my kids and be ensured they turn out how I want them to, I want to know what the next 5 and 10 year plan looks like and for it to go according to that. 

Blindness turns all these on their head. It attacks each one of these in varying degrees. Power? No, I am taking a low place, success will not come without major obstacles, my "performance" goes down because simple tasks now become insurmountable tasks. Control? No. My life, my diagnosis, my speed of progressing is completely out of my control. Soon I won't even be able to drive a car or grocery shop or sort laundry, much less have my life under “control”. Approval? No. Blindness is a disability that lowers your social standing. You are looked upon with pity or sympathy. People assume you are unable. Pleasure? Not as much, not like the world sees it, My ability to see is compromised, I can't enjoy a sunset or a beautiful landscape. I can't run with ease, I can't enjoy a beautiful afternoon drive. But these are illusions. These are what the world says is good, not what God says is eternal or ultimate. He has the power, he is in control, he gives me approval and acceptance regardless of my performance, and he is my source of pleasure and joy, not sight or anything that this world offers up as good. So I will keep on running after that steady line that Jesus offers. I’ll keep holding my ever changing emotions up to my never changing God and ask him to exchange it for truth. 

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. 

Give me eyes to see.

You never plan to hear bad news. Life feels normal until it's not anymore. For years I have had a hard time seeing at night. I thought it was because I have blue eyes or because I am not 20 anymore. I mentioned it casually to doctors along the way but nothing came of it other than some glasses for night driving. Fast forward to December of '18 and things started to change. I was tripping over stuff, running into my kids in the daytime, not seeing a child laying on the floor when I walked in the room. I noticed it was worse but again didn't think a thing of it. Until John did. And he said maybe an appointment would be good. So I get an appointment and think I'll just hear this is aging, you need glasses. I saw the panic rise in the doctors eyes as I failed test after test. I saw her perplexed look with how to tell me. More tests, calling in an ultrasound, needing to call in other doctors to look at scans. I figured things were getting serious. But when I pressed her for what she thought was going on I did not expect to hear potential brain tumor or genetic disorder leading to blindness. No one expects that on a Thursday.

Days swirled by while I waited to get in with a specialist. Only 6 of them, but it felt like 26. Anticipation was the major emotion, accompanied with a lot of peace amongst a few nagging 'what if's'. I knew God had walked me this far, he had been with me in Congo at my lowest of lows, he had been with me when I rolled my child back for surgery, or held my child grieving her past. I imagined having a conversation with God. If he asked me, "If you could go blind or have a brain tumor and the result would be people trusting me for the first time, your kids learning what dependence on me looks like, you finally focusing on what is eternal and not just seen, would you let me do it?" My resounding answer was yes. Now God did not ask this of me audibly I don't think, this was just my stream of consciousness. But all of it to say, I would GLADLY walk a hard road if it meant the result is closeness with Jesus. He promises trials in this world, there is no reason to be surprised by it, even if it is bad news on a Thursday morning.   But those 6 days did a lot in my heart. I put in concrete what I had always wondered: the words I would utter when suffering struck close to home. I trust you God, You are still good no matter what my circumstance is. I want to walk in your purposes and not just my own conveniences. You are worth the hard road. I want closeness with you more than I want comfort and ease. I've typed these things before, even on this blog, but now I was faced with a deeper question: if I believed in darkness what I said in the light.

6 days later, a cold Wednesday in January came and John and I saw the specialist. Many more tests, flashing lights, dark rooms, scans and pictures. Her face looked serious when she walked in with the results. She asked if I understood why I was there, what I had been seen for before, previous symptoms, each question getting more startling and alarmed, her tone growing serious with each second that passed. She explained in vague terms how the eye works when its healthy, only her voice insinuating the opposite for me. She explained how I had something from the day I was conceived, written into the fabric of my being, in and with me every day since. I felt a strange feeling, relief, comfort, preparedness, peace. I did ask her finally what she was talking about. A degenerative (progressively worsening) genetic eye disorder that  results in loss of sight (Retinitis Pigmentosa). She showed me pictures of where my peripheral vision is gone and can't be repaired (the black areas in the picture below) and she also explained things in this field are moving quickly with research and gene therapies even though no treatment is available yet. She explained blindness happens by first losing night vision, then peripheral until its tunnel vision and then tunnel closes, but you can still distinguish light from dark. I’ve currently lost 58% of my vision in one eye and 42% in the other. 

It was definitely a lot to take in but John and I felt calm. She even asked us, twice, how were we taking it so well and how were we so calm. There's really only one reason.

We grieve, with hope. We suffer, with purpose. We may feel alone and overwhelmed but we are most certainly not. A God who knit every strand of my DNA together, even this strand, knew this all along. And he waited in his grace until we were ready to show us one step at a time. That doesn't mean I haven't had thoughts of how not driving will be a challenge, or how not seeing my grandchildren with my eyes is sad, or how life will be with a physical challenge, but I am confident. Confident that he who began a good work in me will see it through to completion (Philippians 1:6). I am confident that he will work all these things together for my good and for his purposes (Romans 8:28). I know that in my suffering that he will give me an abundance of joy as his glory is revealed along this path (1 Peter 4:13). I am comforted as we walk this road and I know he will comfort others through the way I endure (2 Corinthians 1:4). I know this may be a time of grieving and hardship, and there will be more to come, but I know no circumstance can take away the joy I cling to in Christ, he will listen to my requests and make my joy complete in Him, not in the removal of the circumstance (John 16: 22-24). 

John and I talked that night about how life may be different but that God is constant and we are a team. I told him how I can now see how God ordained it all along that it was his grace that I got married young and had children young and had gotten to see my kids grow and experience life with them. All God's graces I do not deserve. 

The next day came and it was another meeting with another specialist. On the way to the appointment I received a call from the orthopedic I had taken my oldest to the night before. He explained that the rib we had X-rayed was not broken, but another one was previously broken but already healing. He continued, "Has your daughter ever had problems with her heart before?" No, not this. My heart sank. He explained on the X-ray they noticed her heart looked abnormal, a part of her heart was enlarged and that can be dangerous. I passed the information off to John and walked into my next eye appointment. I don't even remember the route I took to get to the Eye center. My mind was a flurry of information and questions and concerns. I prayed. I asked for help, for healing, for peace. I walked into the waiting room and was called back to see another Physician who assists the genetic specialist. He again took new scans and confirmed the diagnosis. He showed me the damage already done. I asked how quickly will this progress, how much time of sight do I have left. He answered "I am a man of faith and I believe God has ordained each step for you. This is not in your hands and you do not need to worry about it". I had asked for peace and He gave it, I asked for comfort and He gave it. This doctor proceeded to answer all of my questions and asked if he could pray with me. He prayed confidently that God entrusted this to me and will use it for his purposes, he asked that I take every opportunity to use it for my good and the good of others, he echoed my words that my confidence cannot be shaken, it is in the God who created the universe and every fiber of my being. Why should I be afraid when that God is by my side? 

That same day as the eye appointment and the call about my daughter, my sweet uncle passed away. A random trip and fall in a parking lot led to a bleed in the brain and he is now meeting Jesus face to face.
It has been one thing after another these two days. An overwhelming sadness and an imperturbable peace. This world is not my home. We were made for another. This life is temporary. We are not guaranteed tomorrow. 

I don't know if it was an error by the radiologist reading Reese's X-ray or the Lord answered my prayer of healing my daughter's heart, but today the cardiologist and radiologist could not find the enlarged artery, all was functioning normally. I am beyond amazed. 

What a week it has been. Have there been days where I have eaten an entire bowl of Jello Pudding? Yes:) Moments when I am sad that I may not get to see a child walk a stage or an aisle? Yes. But I have had a solid group of dear friends praying for me, holding up my arms, praying when I am too tired to, and giving me space to verbally vomit and point me back to truth. But not in a Christian cliche' way, no, in the pit with me, yanking me out, and spurring me on. 

I'm letting you in on my journey, as I process, as I pray, as I experience the ups and downs. I don't want attention or sympathy, but I want Jesus to be on display. I am sad at times but I am not afraid. I do not put my trust in things seen.  I do not know how all of this will play out for me as far as timing goes, but I know how my story ends. Jesus is still on the throne. 

It has been a whirlwind 8 days. And then I remembered a few weeks before all of this, when life felt normal and I was praying through what 2019 would hold. I scribbled down these notes as I journaled on 2 Corinthians 4:16-18 

"God help me not trust in things SEEN. Help me fix my thoughts and affections and trust on the eternal un-changing you. Not the easy quick-fix or temporarily beautiful. Lead my thoughts, desires and attention to you and your kingdom coming, not insulating my own kingdom that is literally dying. I want more of you and less of me. I want a faith that trusts you at every turn and EYES that focus on you."

You see the Lord heard that prayer on January 9th, 2019. I didn't know anything that was to come the following days but he did. He is answering it, in ways beyond my imagination. He is helping me to not trust the seen. He is helping me fix my gaze and attention on what is unchanging. He is slowly prying the kingdom I wrap my fingers around out of my hands and reminding me where I have been all along. He is showing me that my days are short and to live for what matters eternally. He is helping me to experience and grow a deep rooted faith that will trust him at every turn. He is giving me eyes that see him and focus on him. I'll keep taking each next step, eyes fixed on him.