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

Two years . . .

I remember it well, my fourth child and my longest labor . . .Henry was born after 13 hours and I laughed when I saw his thick jet black hair.  Whoever said that kids with thick hair give you heart-burn was right, I had the worst heart-burn of my life when I was pregnant and Henry of course he had severe GERD and colic.  I'm not sure what the hair has to do with it, but that old wives tail may have a bit of truth to it!  The neat thing about Henry is that he was the answer to my oldest daughter Hannah's prayer to have her baby brother born on her birthday.  And so today she turns seven and he turns two.
 
I sit in awe today, and waves of nostalgia wash over me.  I've been a mother for 7 years.  How did that go by so quickly.  I remember when I brought my first daughter out in public as a newborn.  I remember a mother I met in the store; "I remember when my children were that little . . . it goes by so fast, cherish it." she said.  Her words stuck with me, the longing in her eyes warned me of a time in the future, when I would actually miss those nights of sleep deprivation, nursing and rocking a newborn.  She was right, it was gone in a blink of an eye.

I sit in wonder and awe that God choose me to be the mother of these precious and beautiful children.  Me, a flawed , impatient and imperfect person.  He gave me these beautiful, spirited, funny children, a gift beyond anything I could have ever imagined in my life.  I am indeed blessed.

The past two years has gone by faster than any previous years.   It was like a world wind of tests, doctors visits,  fears and worries.  It was a pit of darkness and nearly despair, and a wilderness of unknowns and a deep thirst for answers.   At times I was gripped with panic and despiration, the terrible helplessness in not knowing what was wrong with my son, or how to help him.  Some questions are still unanswered.  Why is Henry still aspirating?  Why is he still underweight?

I've had him on an elimination diet for over 6 months.  His stomach issues have improved, it's not quite perfect, but the diarrhea is mostly gone.  He still has to drink liquids very thick, or else he coughs and his chest gets rattly and congested with aspiration.   In case you were wondering, we chose to hold off on the swallow study, and yes the allergy testing too.   Maybe you wonder why.  Well, Henry doesn't have any symptoms of true allergy, he has "intolerance's" to many foods.  He has had blood work in the past, as well as skin testing when he was younger.  When I give him dairy he doesn't swell up or get hives.  He has diarrhea;  he burps and has a lot of reflux sounds in his gut.  So  I opted to not put him through any more testing as of yet and to try to continue on this diet.  Also, he has had at least four swallow studies in the past year.  All of which showed that he was still aspirating.  I wanted to give his body more time to heal from the inflammation that might have been caused by food intolerance or the FPIES that he was recently diagnosed with.  The doctorsfeel if he has not outgrown his pseudo-laryngeal cleft (Cincinnati children's determined that he has something LESS than a type one cleft which is the smallest size cleft) that they would attempt to sew up the grove in his larynx in hopes that this would stop his aspiration of thin liquids.  I guess, I am not quite ready to do the surgery.  I have seen some progress in little Henry, and when given small amounts of water with a cup, in which I can control the sips, he doesn't choke unless he takes it too fast.  The confusing part is Henry's aspiration is silent, so we usually don't see the signs of it right away, until a few days later when he is sounding "gunky" in his throat like he has to clear it, he also starts sneezing a lot and then coughing and much later wheezing.   In other words, I am not convinced that a surgery would fix Henry's aspiration.  If have learned anything about aspiration in the past two years, it is that there are many reasons that a child aspirates, it is not always as clear cut as having a laryngeal cleft.  Sometimes surgery helps, other times, there are more things involved, such as reflux or GERD and in Henry's case also food protein intolerance.  I am not fully convinced that a surgery will "fix" him.

All this to say, that we are sort of in a holding pattern.  I am okay with this.  Last year on Henry and Hannah's Birthday I called 911 because Henry was gagging and going limp.  It was a horrible day.   Looking back on it, I think he was possibly having a delayed reaction to the food he had eaten earlier, but it took me nearly several months to find out that he had FPIES (Food Protein Induced Enterocolitis Syndrome).  It has been a long, rocky road.  I have been  tried  and stretched and today I am a thousand times thankful for today:  the present moment.  Today my son is rosy cheeked and happy, today he is eating and drinking by mouth and not by G-tube like he was last year, today he is making funny faces and running around the house being a normal toddler.  Today he is off ALL of his medications, he is not wheezing, he is not at the hospital.  He is home.  I know that others who read this are not were I am yet, I maybe you are at the beginning of the journey to answers and hope.  Henry is not perfect, there are many foods he cannot eat, he cannot drink liquids without thickner, but I choose to look at all that he can do and all that we have today.  I hope to give you hope for a better tomorrow.  I hope that my today will be yours soon.

A wilderness now, but a promise awaits

I don't have any pictures from the birthday party.  At 1:30 PM we called 911 because Henry had one of his "spells" again, and this time he looked really blue.  I wont belabor my frustrating day in the adult ER and then our transfer to Children's in which we didn't even see the Doctor until 11:00PM that night.  I struggle to find words to express the emotions I am facing:  confusion, anger and worry, and a deep sadness.  I was waiting all week to spend this day with my daughter Hannah who turned six and to celebrate Henry's day too.  I sat in the ER alone for the first four hours until Matt arrived after work.  I held my son and all I could utter to the Lord is "why?"  Silence.  

They sent us home this morning with the only suggestion being to stop feeding him by mouth until the repair in August.   This answer is so unacceptable to me.  To deprive my baby of food when he is reaching out and asking to eat?  It seems so counter instinctual for a mother to not feed her child.   Also, he had lost weight at his one year check and is falling off the growth curve.  I feel discouraged.   When asking the doctor what we should do when he turns blue again, he really had no answer other than, "I know these spells are frustrating."   A huge understatement on his part.

We are to follow up with our pulmonologist on Monday and Henry is on a steroid burst again.  He has a fever and is very lethargic.  I told the Doctor that I know this isn't just a cold or something.  Something is wrong.  I know it is not normal for a baby with a type one cleft to not be able to tolerate eating.  It is not normal for a baby to having blue spells.  I just need to find a doctor who cares enough to help us--something so easy; feels so impossible.

Thank you for your continued prayers.  Please pray for Henry's protection and for wisdom for me until we figure more out.  I don't know if we need to seek help out of state?   That is what we are discussing with the pediatrician.

Many of you have mentioned, "I don't know know why God is allowing this in your life."  I don't know the answer to that and I wrestled with Him all night with the same question.   I would not consider myself really charismatic, but this morning I just told the Lord:  I need a word from you. . . something.  Shortly after  I found a chapter in the Old Testament concerning Israel and their journey in the wilderness.  Oh, my, do I ever feel like I am in a wilderness.   The Israelites constantly complained and bickered and had the tendency to remember ONLY the good things about Egypt, forgetting that when they lived there they had been SLAVES.  They started thinking even slavery would be better than the wilderness, and years of NOT KNOWING what God was up to.   I know that is our human nature, we want to know and we want to know now!  God brought me comfort with this passage, and I will hold on to it for the time being:

"For the LORD your God has blessed you in all that you have done; He has KNOWN your wanderings through this great wilderness.  These forty years the LORD your God has been with you; you have NOT LACKED A THING."  Deuteronomy 2:7

Let me leave you with these truths: 

It is true that God has blessed me beyond measure with my family and the love and support of my extended family and my husbands family.  God KNOWS my wanderings, and there is comfort in that, in knowing that HE KNOWS what I'm going through.   He is with me and because of that, because of Him, I don't lack a thing.

Please hear this as well, as my blog will be completly in vain if you read it and say to yourself "wow, that woman is really strong."  Or "she must be a supermom."  Let me just say, if I was a supermom, I think my house would be a lot cleaner and my oven wouldn't have started on fire this week when I attempted to bake a Birthday cake.   I am hurting deeply right now.  I feel that I am close to a breaking point as I have never been before.  One thing and one thing alone sustains me, and it is the knowledge I have of God and the relationship I have with Him.  Along with that, my relationship with Him is not some sort of holy perfection.   I have struggled more over this past year with finding time to pray and to read the Bible.   I have struggled to believe and trust the words in scripture.   I don't pray ten times a day or have an hour long Bible study every day.  God is the one who has been faithful to me, not the other way around.  I have been angry with Him and I have let Him know how unfair I think life is. 
Like the Isrealites in the wilderness, I have wondered why He is keeping me in this wilderness and where He is taking me. 

There is something I know because unlike the Isrealites at the time, I have read the full story.  At the end of the fourty years there is a promise land, like nothing they could have imagined.  I know that at the end of this life, something better awaits me, and my son.  Not because of something I have done, but because of what Jesus did for me.  I'm at my weakest point right now, but God remains the author and perfector of my faith.   God has a plan that I can't completely understand because I am only human.   Someday when I see Him face to face, He will wipe away all the tears from my eyes, this life will seem like a distant memory and eternity with Him be when real life begins.  I expect the next few months to be hard, I'm gearing up for this walk through the wilderness.  I don't know where I am going, I feel blind, I feel helpless.   I trust the ONE whose leading me and that is why I grieve deeply, but I do not despair.    We live in a country that is full of so many treasures that even the poorest people are weathy.  We are surrounded by so many distractions that make this life on earth seem like it's all that there is and so when things get hard, it's hard for us to see beyond our present circumstances.  This isn't it.  This is just the wilderness, the promise land awaits.  If you've been thinking that this life is all there is, I hope you'll reconsider. 

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