A Dark Tunnel, Bricks, and A New Story--Navigating Adversity, Vulnerabilty and Resilience

Have you ever been lost in a dark tunnel without a flashlight?  You can't see behind you or in front of you.  You feel with your hands stretched out, each step a risk, as you have no idea what lies ahead.  It's too dark to turn back, you know you have to keep moving forward but you don't know where you are going or where this darkness leads.  It is so dark you can feel it, like a blanket you are clocked in it, so thick you can't remember what life was like before the lights went out.  This is the darkness of PANDAS, when the lights go out and the child you loved disappeared.   It is especially dark in the beginning when the diagnosis is unclear or help is scarce or unavailable.  You yell into the tunnel, you scream and your voice echo's against the walls; a chilling reminder that you are here alone, navigating through this darkness untapped and without a guide.  There were times that I navigated this tunnel on my knees, dragging myself through the muck, clinging to the hope that maybe I would find my way out.  I was to afraid to even stand,  lest I fall and never get up again, I was hanging on by a thread.  

Yet, what if I told you that on the other side there was light and laughter and joy.  That beyond the tunnel is the REST OF YOUR LIFE, for you and your child.  I know you can't see it, but it's still there waiting for you.  What if I told you that the darkness was just a curtain and that you were literally just a few feet away from the exit.  I wish I could just reach through and pull you out onto this side of hope; however, the only way to the other side of the tunnel is to walk through the darkness.  I hope that even as a whisper my voice will reach into the darkness and that when you hear the proclamation of hope you will keep walking towards the sound of my voice.  

When I was in the tunnel, I couldn't picture anything more than what was in front of me, I couldn't even see my own hand.  There were moments that I imagined giving up, just laying down and just dying right there on the floor.  Some days it was just hard to even breath, the grief was so heavy.  I couldn't write about it then, because it was so painful, and to be honest, I didn't have the strength to believe that things could ever change.

On the other side of the tunnel my son actually still has struggles and things are not 100 percent, however I am the one who has truly changed.  I have walked through something that has transformed me and I will never be the same.  Had you talked to me a few years ago, I would not have predicted this outcome.  At the time, I would not have imagined that this experience would improve me, in fact, I felt it brought out the very worst in me.  I want to share this with you, because I know you think you are the only one who is feeling these things, but that simply isn't true.  When my son was at his sickest, he was not redirectable or even reachable.  He would literally scream for hours and hours, he would throw things, break things, punch me, curse.  I was afraid for my other children so I sent them to my parents house.  I know now that his brain was on fire and this wasn't his fault but at the time, I didn't know what was going on.  I became reactive to him, I developed PTSD, but I didn't realize that was what I was experiencing.  When he would start screaming, I would instantly go into fight or flight: it became an automatic response.   I would scream back at him and I did not respond in a very productive way for either of us.  This of course only lead to more and more grief on my part.  I knew he was struggling but I was struggling too.   I was so scared, for him and for our entire family.  The guilt I had was as thick as the darkness, and like a brick I added it to my backpack, which I drug through the tunnel of darkness, making it even more difficult to get to the other side.  I carried these burdens alone for the most part; it's hard enough to have a child who is struggling immensely, but how do you talk about your failings as a parent?   How do you even face such doubt as your own ability to cope?  How do you navigate feelings of inadequacy?  It was beyond unbearable.  Could I tell people, there are days that I feel like I hate my own child?  Could I tell people that I was full of anger, guilt and despair and that I was struggling every day to get through?  I felt like I was dying on the inside, but I couldn't tell anyone because I was so ashamed of myself.  I was so ashamed of the way that I felt about my son.   I was ashamed of the things that I said to him in anger and in reaction to the illness that stole him from me.  So I hid these bricks in my backpack--the bricks of guilt, the bricks of failure, the bricks of shame and I told myself I was a failure as a mother, and I cried in the darkness alone.  

What if I told you, that there is a way to actually turn on the light in this tunnel.  It may not actually bring you out of it, you may still have to walk through it, because healing for us has not been linear, it has been up and down and everything in between, as it often is with PANDAS.   Here is how you turn on the light.  Whether your child has PANDAS or some other chronic illness or is just a challenging kid; We have to normalize shame.  We have to stop acting like it is unusual to be struggling as parents dealing with children who are chronically ill, with an illness that is debilitating at times.  We have to be honest about our humanness, and we have to be kind to ourselves.  For the past four years I lied to myself, adding brick upon brick of shame into my backpack.  It wasn't until I opened the pack and pulled out the bricks and started to name them, that I was finally free of them.  Where do you tell yourself "I am not enough?"    When you bring the bricks out that are weighing you down, and you identify the lies you are telling yourself, then you will be free of them and you will be able to walk through this tunnel a little lighter.  I almost lost myself in that tunnel, I gave everything I had and more, to try to heal my son, mean while dragging my backpack and dragging my unnourished, emaciated self through the muck.  What I mean is, when we are feeding ourselves these lies of "shame" and more so, the lie that "I am the only Mom that feels this way", the lie that "I am not a good enough Mom, or patient enough Mom" or whatever you say to yourself.  When we feed ourselves these lies we are depriving ourselves of the nourishment we need to face the darkness and get through the tunnel.  Whatever we set our mind on, will grow and expand.  The more I berated myself, tore myself down, envisioned a future that was hopeless for both myself and my child--the more the darkness grew, until it threatened to consume me.  This is such a slippery slope, and you fall into it without realizing it.  

Believe me I know where you are walking, I have been there and barely lived to tell about it.   I can't empty your back pack, you have to do it for yourself.  So tell me, what are the bricks you are caring around?  Will you bring them out into the light?  The more we Mom's bring out the shame we are feeling, the less power it has over us.   The second thing I would challenge you to do, is to attempt to write a different ending to your story.  I'm going to just be honest, the story I was telling myself was, "my son is probably going to grow up to be a criminal."  This isn't a joke people, this is where I was in my mind, because yes, it really was that bad in our home every day for a long time and I was drowning in sorrow.  I have to bring this out into the light, least any mother out there think she is alone. I just wont have it, I wont let this world loose a beautiful mother to this darkness or to the lies that threaten to beat us down and tell us we are worthless.  It simply isn't true.  So, I ask you, what is a story that you could write for yourself that is better than the one you are living now?  I know you can't feel it right now, but what if it could be true?  Could you write your story of hope the way you want it to turn out, and then keep it by your bed and read it to yourself every night?  It will speak into your darkness and give you hope, and each day you will believe a little more of it to be true.

This is my story:

There once was a beautiful boy, he struggled with many things and then he got very sick.  He was still the same beautiful boy but he was hidden from his family and transformed into something that was not the likeness of himself.  He appeared so different on the outside that after a time it was hard for even his parents to remember the beautiful boy that he was.  There was a shell around it him, it seemed as though it was him but there was only a trace of who he used to be in the dim light of his eyes.  His mother loved this boy more than her own life, she fought for him every day.  She made many mistakes as all mothers do, she fell hard on her face but like a warrior she got up and she fought for him.  With blood a sweat and tears she fought for him, on her knees and with heartfelt tears she begged the God that she loved to save her son and save her family.  As God often does, He didn't answer immediately, He was surely at work but He was doing more than just working on the boy, He was working in the heart of the mother, whom He truly loved and knew that she was more than she realized.  He had hopes and dreams and plans for the boy and his mother that were beyond either of their understanding.  Yet sometimes hopes and dreams are grown in the soils of hardships and pain.  God had a plan to use this mother and the boy to bring hope and light to others who would walk a similar path.  The mother clung to her faith if only by a thread and others prayed for her when she didn't have the strength to pray for herself.  The mother woke up one day as if from a daze and realized that she could not properly take care of the boy if she didn't take care of herself.  She realized she was weak and thirsty and tired and worn from the years of trial.  It was so hard to change, as she had always put the boy first, but she realized that if she continued this way, she wouldn't be strong enough to care for the boy so she set off to take care of herself first.  She first admitted she couldn't do everything for him, she needed help so she asked for it.  She enlisted others to help her.  She started to talk about her struggles and bring her pain into the light.  The more the light shown on her the more she grew and strength entered her body and feed her soul.  She started to make herself a priority, she feed herself with nourishing food and exercise to strengthen her mind and body.  She took care to sleep and she fed her mind with words of truth and empowerment.  She threw off the sack of heavy bricks and lies that kept her from standing up tall.  Something strange happened.  She started to see the boy under the mask that kept him hidden, she remember the child he was and she spoke truth into his life.  She prayed over him when he was asleep and even though he was still hidden from her she believed and started to hope that he would get better.  She refused to entertain the thoughts that added weight to her backpack, she threw them off along with the lies of her inadequacy and she started to walk with her head held high.  Even when he wasn't well, she became well, because she knew that his healing depended on her caring first for herself.  She set her heart towards the belief that he would be fully healed and she told herself this even when it wasn't true yet. 

This mother grew and she thrived and she lived to tell her story to any who would hear it.  She didn't have the perfect boy, and she wasn't the perfect mother.  But she was the best mother she could be.  Her beautiful boy came back to her, and even when he struggles now, she doesn't react or fall back into fear that he will be taken again, for she knows he is always her beautiful boy, and she knows she is the best mother for him.  She has come to be this mother as she grew out of the soil of adversity, nothing can steal this from her, she has lived to tell the story and so will you.  

This is an amazing video by Brene Brown, it really encouraged me and inspired this post: https://www.youtube.com/watch?v=iCvmsMzlF7o

Disappointment, Doubt, Discouragement--how do we cope

(If you don't have time to view the entire post skip down to the end for the summary points)

Many of you  dreamed of your baby taking that first bite of food and smearing it all over his face, not a child who vomited every time he tried a new food or got a rash from head to toe.   Many of you imagined a happy go lucky little one, not a screaming colicky baby who is still so fussy and fragile, who seems to be in pain more often than not.  You face daily disappointments and the overwhelming feeling that it is up to you to figure this out.  You spend your sleepless nights holding that crying baby and trying not to cry yourself.  You can't help but wonder why this happened to you and why God allowed this, couldn't you just have been like everyone else who has a baby that eats and sleeps normally?

You feel so overwhelmed every day, trying to keep it all together on little sleep.   You see the piles of laundry and dishes, you see the carpet needs vacuumed and the bathrooms scrubbed.  You need to go to the grocery store for the fifth time this week, that's the one thing you absolutely have to do, because you can't go to a fast food joint to pick up something "easy," you can't just take a break or have a night off from food allergies or intolerance's.  

At the beginning you told yourself, this would be over soon, the baby would grow out of his colicky state, he would eventually be able to eat, this wouldn't last forever.  Two and half years into it, it's hard to keep saying the same things over and over, how are you going to keep your spirits up in the midst of a "chronic illness?"

I say these things with humility, as nurse, I encounter Mom's all the time, who have children who have been battling cancer, have diabetes, are disabled, or will never grow to be self sufficient without the help of their parents.  I have spoken to countless parents who keep marching on in the face of adversity, who put themselves aside every day, to take care of the child they love.   What keeps them from falling into a deep depression?  How do they wake up every morning and deal with doctors appointments, chemotherapy, and caring for children with chronic illness? 

Love. 

The love of a parent is all encompassing.  It is powerful.  It is blind, it is selfless, it is strong.  This love will fight against all odds, to do whatever it takes to protect his or her child, to help him, to give him or her the best life possible.  I have seen this, I have lived this.

We keep on because we have to, for our children.

However, it is possible to allow the chronic to steal our joy, even our very life away from us.  To consume us, to overwhelm us.  We have to fight this discouragement with the same gusto in which we are fighting for child.   Doesn't our child deserve to have a mother who is full of joy and life, in spite of all that threatens to take that from us?  I have seen the chronic destroy the spirit of the caregiver, I have seen the caregiver become so overspent, that she falls into a place of discouragement, or bitterness or depression.  How do we, the caregiver cope with the demands that fall upon us and at the present, have no for-see-able end in sight?

Let's turn to my favorite source of wisdom and help, The Bible, God's Living Word to us. 
What are the two things that often steal from our joy and threaten to weaken us and bring us down as we care for the chronically ill?  I would say for me it is fear and anxiety. 

"Cast all your anxiety upon Him (Jesus) because he cares for you."  1 Peter 5:7

The apostle Paul,was no stranger to suffering, he himself had been imprisoned, beaten, mocked, and even suffered from his own physical aliment which he refers to has a "thorn in his flesh."  He speaks from his own experience with chronic pain and suffering,  and he tells us:

"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God which surpasses all comprehension shall guard your hearts and minds in Christ Jesus."  Phil 4:6-7

He goes on to explain how we can allow God's peace into our lives, we have to watch what our minds are dwelling on and make an effort to actually think about the following things:  "whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, let your mind dwell on these things.  The things you have learned and received and heard and seen in me, practice these things; and the God of peace shall be with you.:  Phil 4:8-9

Paul is one of my favorite hero's of the faith, he knows what it's like to endure hardship, yet he keeps his joy, he keeps his faith in spite of it all.  He has this belief which keeps him going

"And my God shall supply all your needs according to His reaches in glory in Christ Jesus."  Phil 4:19

You may be saying to yourself right now, well apparently God does not know my needs because he sure isn't supplying them right now.  I agree that there are times, when it feels like God is neither listening or near to us.  I do not wish to minimize your pain and suffering.  There were times in my journey when I felt that God was distant, when I cried out to him and felt He was silent, it was in times like these that I needed the help of others to keep me going.

As women, we are not good at asking for help.  We are used to doing it on our own.  In our culture we applaud those who put on a happy face and act like they have it all together.  The supermom who does it all!  In so doing, we do ourselves and others a great disservice.  In general, I feel that sometimes Christian women and mom's are even worse at being genuine.  Rather than admitting we are struggling with something, we try to act like we are the "good Christian" who would certainly never have questions or doubts.  What are we afraid of?  Afraid of being seen for who we really are, human?  We are still imperfect, that is why we need God's help, that is why we need each other.  We sometimes need another woman or older woman to come along side us and pray for us, to build us up, to share her wisdom and her journey.  We need to hear the stories of the older generation, we need to seek these women out and ask them to coffee and ask them how they did it.  We need to be real with each other so we can know that we are not alone in our struggles on this earth. 

Paul himself reminds us of the real secret to his incredible attitude, the real reason he kept going and never gave up in the face of constant adversity.  "But whatever things were gain to me, those things I have counted as loss for the sake of Christ, more than than, I count all things to be loss in view of the surpassing value of knowing Christ Jesus as my Lord, for whom I have suffered the loss of all things, and count them as rubbish in order that I may gain Christ, and may be found in Him, not having a righteousness of my own derived from the Law, but that which is through faith in Christ, the righteousness which comes from God on the basis of faith . . . I press on toward the goal for the prize of the upward call of God in Christ Jesus."  Phil 3:7-14

Paul knew, believed more than anything else, that there was more to this life than just the present day struggles.  His primary focus was on God and he says that he counts everything else as garbage that can't even be compared to the future that he has in heaven with Jesus.    He knew that the thorn in his flesh was temporary, though afflicting him in this life, it would have no power over him in the next.   He had his focus on Jesus first, He made an effort to put Jesus and the things of God first in His life, above everything else.

Well, that's all well and good you might say, but I'm not Paul, I'm just a regular person, and I don't have some super faith like that.  Well believe it or not Paul wasn't as different than you as you might imagine.   In fact he is quick to remind us that he was the "least of all saints," Eph 3:8, and that he was not even fit to be called an apostle 1 Cor 15:10 because he persecuted the church prior to his conversion.  If anything, God uses Paul to show us that He can use anyone, that He can change anyone, that if we put our hope in Him anything is possible, that His grace can reach the darkest soul and transform it.

I imagine that some of you may not know Jesus, I invite you to read the Bible, without thinking about what you've heard or imagined Him to be.  But start with the Gospel of John and just read about Jesus and see who He is and His message to you personally. 

As I think of the love that motivates me to keep fighting for my son.  The love and makes me want to be a better mother and a better person; I can't help but think of the sacrifice that God made for you and me.   Think of that love that you have for your child and imagine allowing your child to face suffering and pain, to not intervene on his behalf, to give him up to save someone who didn't even know you or even care for you.  This is the love that God has for you, I hope that you might embrace it and let it tranform you. 

"For God so loved the world, that He gave His only begotten Son, that who so ever believes in Him will not perish, but have eternal life. " John 3:16

Summary on how to overcome disappointment, doubt and discouragement

1.  Give your anxiety to God and believe that He cares for you 1Peter 5:7
2.  Pray and make your requests known to God  Phil 4:6-7
3.  Make and effort to dwell on the right things Phil 4:8-9
4.  Admit your struggles and your humanness
5.  Seek out other women who can help keep you on the right path and encourage your faith
6.  Know that this life and all the hardships that come with it are temporary Phil 3:7-14
7.  Accept Gods love for you, forgiveness and provision for you to have eternal life in Jesus John 3:16