A Night to Remember

Monday, October 30, 2017

I'm sitting here on a rainy, windy, Monday morning, wanting to write something profound about my daughter's illness and recovery. Strangely, I'm a feeling a little unsettled that I have nothing to write. We've been treating chronic lyme, several co-infections, for months now, using herbal tinctures recommended by Stephen Buhner in his Healing Lyme books, and a protocol of nutritional supports. Typically, when I've felt inclined to write, I could come here and let it all pour out, but today the inclinations brought me to a blank page. Nothing bubbling over, no emotions running raw. Still, I am compelled for some reason, so I sit.

Healing is a journey just as illness was but almost ellusive in its conscious experience. I set out many years ago to figure out what was wrong with my daughter. I needed to "fix" my kid. A phrase that doesn't sound right to me now, sitting here in relative calm, knowing my little girl is mostly healthy. "Fix my kid" sounds blunt and detached, but in those dark moments when the world was crashing down around us, screams heard throughout the house and into the street I am sure, those were the words that reverberated up and out from the depths of my soul. In those darkest of hours, screams of spiders that were not there and "bad thoughts" that stormed in to her head as we turned out the light each night. Screams that startled me upright from a sound sleep, bolting to grab her and hold her, desperately trying to bring her a sense of safety and comfort. My baby, shaking with fear, eyes darting around a darkened room, legs flailing away at the invisible assaults she felt just as surely as I felt the weight of her in my arms. In those moments, in those desperate moments a parent screams in to the silence, I NEED TO FIX MY KID.

My silent mind screaming, I had to fix this. It was all I could think. How on earth I cared for the rest of my family in those days I do not know. A distant foggy memory stored at the forefront of my memory, standing ready at the call, for the moments I remember. And I remember. The fog lifts and there it is, in my face, so close I can feel the stone in my heart and the adrenaline in my veins, and the shaking light weight of her in my arms. A memory that is far away until it comes rushing back and takes my breath away. I needed to fix my kid. Why can't anyone help me. Screaming silently in to the blackness of the night and of the illness and of the hell she was in.

I broke that silence with a friend one night. A wonderful light in the world, this friend had helped me get my daughter through one of her worst nights. I didn't write everything about what was happening, but the following messages started at 10:39 and continued through the early morning hours.

*****************************************

09/15/2016 10:39PM

Ba

Omg [FRIEND] I am at my breaking point. Only I don't have the luxury of breaking. Amelia has completely relapsed. I am so mentally and physically exhausted. I just can't believe that it keeps getting worse every day. Praying to a God I don't believe in that this new antibiotic works and we get relief in the next couple of days. Send me strength.

Later

The symptoms are more severe now and so hard. She has been freaking out on and off since 830 bedtime. Ocd about everything related to sleep. I get her calmed down and we lie down. And within 10 mins she's kicking and agitated again. Now upset that stuffed animals aren't placed right. Earlier bc her hair felt itchy on her neck and pillow. Last night up for 2 hours with joint pain.every morning huge meltdowns and even some rages about clothing.

Later

Now she's crying. I can't help her and it's killing me

Later

I just had her come in to my arms and I held her firmly. Talked through a couple things. I think it was a panic attack. When I held her she cried that she didn't know what to wear. Now she's calm and chit chatting. Incessant chatter. Questions and thoughts keep pouring out.

Later

I can't believe she's still awake. Says she's going to open a store for organic food and put up a sign up for people with disorders so they know it's safe to eat.

Later

Now talk of death. Signing off to do that grounding thing.n thank you so much! I feel better able to help her now. Oh and "how did the George Washington die?"

09/15/2016 9:24AM

I hardly remember messaging you last night. I was so exhausted and scared. Thank you for being there. She fell asleep in my arms at midnight. Then at 2AM woke me up with kicking and jerking her legs. Very agitated but half asleep. I sat in the recliner with her on my chest like you would an infant and it seemed to calm her.

Later

It could be a progression of the PANS symptoms or it could be a bad reaction to a new antibiotic we added yesterday and a change in supplement dosage. I let her sleep in and drove her to school this morning. She was still a bit manic but functioning pretty well.

Thanks so much for being there.

******************************************************************

I just kept thinking, I can not let her suffer. It's been too long, too hard, and I've got to fix this before it is too late. I didn't know what "too late" meant but when your child is sick and tortured a parent just feels a sense of urgency.  And now, we have healing. But those memories are on guard, ready to pour back in, and sometimes they do. Out of nowhere I realize my adrenaline has spiked, as I pick up on the teeniest tiniest fluke in her behavior. Every little thing could be the start of a big thing. A stuffy nose could send us spiraling. But for now, I have fixed my kid. For now.

Strength. Hope. Love.

Freedoms Rediscovered

Wednesday, September 20, 2017 

Tonight I went to my first PTO meeting and I stood in that room feeling lucky, not to be there, but to be ABLE to be there. I was there without worry or doubt, knowing my daughter is free from the symptoms of a horrid illness that has plagued her for so many years. Free from the need to have me and only me there at the time of day when symptoms could be at their worst.

This has been a long time coming. I wasn't sure it would ever happen.

When your child is sick but doesn't look it. When the symptoms require that you be with them, and leaving would amount to abandonment in the darkest hours of their day. Years of heartbreak and hope. Watching them struggle with what comes easy to most of their peers. Five years of being the only one who could be there, not because I wouldn't let my husband help but because he couldn't. As much as he wanted to and as much as he tried, she couldn't be without me. Some of the worst parts were that friends and family assumed I was just being over protective, while others went so far as to say we were coddling her and making things worse. The worst part was  knowing that when I had to leave, it could be torture for her. Being your child's Only Person is not only incredibly hard, it is sad because you know they are imprisoned. Your child is not free. You accept your own confinement but to see your child cornered by her own mind and body is heartbreaking.

Tonight I was not needed. I was away in the hours that lead up to bedtime and I did not nervously hold my phone, waiting for the text to call me home. I knew she was okay. It was a great evening and I came home to two happy children and a father who can finally parent his first born again. Finally. We are whole again.

Strength. Hope. Love. 

A New Chapter

Sunday, September 3rd, 2017 

If you don't quite understand how medical illnesses and underlying nutritional deficiencies cause anxiety in a child, I could explain.  If you want to understand how OCD, terrifying fears, insomnia, clothing sensory, and emotional outbursts can be caused by a stealthy underlying infection, just ask.  My daughter has busted through two more milestones in the last 24 hours that she's been struggling with for 4 years.  She has broken through.

FOUR YEARS of illness. Four years of pain. Four years of asking, why. Four years of pediatricians who couldn't help. Four years of people giving me well-intended but infuriating parenting advice.  Four years of research, learning, fighting, tests, $$$, heart-breaking setback after heartbreaking setback.  Four years, each one building upon the other, to give us the knowledge we needed to figure this out. Four years of kinship with other warrior moms, trying to heal their kids of all kinds of illness; pandas, pans, Lyme, ADHD, odd, asd, Tourette's, anorexia, and of course, spd.  Moms who refuse to settle for, "this is just the way it is".  

And just as I knew four years ago, deep in my bones and in my soul, that something wasn't right, I know now that something is.  This is not the fragile, teetering, temporary improvement we've seen so many times before. I can feel it in my bones and my soul is whispering to me....we're on to something and she is healing. 💕

To every friend, old and new, who has been there with me, thank you.  Thank you for listening to me drone on about the dangers of chemicals, toxins, and vaccines for our kids.  My winding explanations of methylation and detoxification.  Cell mimicry, auto-antibodies, glutamate, and inflammation.   To the moms who have been on this path much longer than I, who shared their knowledge and set me right, (you know who you are), a special thank you from the bottom of my heart. I know there will be issues to contend with, and future illnesses can set us back, so this is not the end of her story; but is the beginning of another chapter.

Hope. Strength. Love.

Time Warp

Friday June 23, 2017

I don't know how long it's been. I'm not sure if it's been weeks or a month. I can't even go back and look at my group posts to check because I don't think I have bothered to post much (at least I don't think I have). It's all a blur. The pit in our stomach when it's time to get dressed is back. Her fears of being alone in a room, even her own, grind her independence to dust. "Mommy WHY is it coming back?! I don't want to feel like this!" I don't know exactly how long it's been back, but it's here.

We are bumping along. At eight-years-old there is more capability to reason so we are able to process her emotions a little better than before. Listening to what it feels like to have her body betray her again is crushing but it is something I can do for her. At times it is all I can do and the most difficult thing to do. To listen without trying to help her; no advice, no suggestions, no directions. Just quietly hearing her and seeing her and really being in the moment with her. Sometimes it is the only thing I can do.

We are all doing much better in our actions if not in our hearts. There is a resolve that has moved in which is at once a welcome calm and a frightening realization that this may be our "normal".  Up and down. Peace and torment. Healthy and sick.

What is it this time? She either has a cold or allergies and either one could be causing symptoms. We are trying different OTC allergy meds with no luck so far. A new nasal spray will be here tomorrow which has some promising results with other kids like this. One other lyme herbal is coming and we will hope something gets us back to healthy.

I am nearing the end of my hope that herbals and supplements might be the answer. They have helped and we've made tremendous progress in pulling out of the horrid flares we fought for the last year, but I want MORE.

I want my daughter to be able to wear whatever she wants to wear. She doesn't have to like how jeans feel but she should be able to wear anything she WANTS to wear. A comfy pair of shorts should not produce so much trauma. I loose nightgown shouldn't be too overwhelming to put on. So we'll try a few more ideas, wait to see if symptoms subside as this head cold or allergy attack passes, we are trying some behavioral therapy techniques. I've set a date in my mind and if we have not leveled out again by then it may be time to revisit antibiotics.

Progress is wonderful but we need consistency. We need to feel secure in knowing that we won't be thrown in to another horrifying flare without warning. When they start we never know how bad it will get or how long it will last. There is no magic ball. We just hold our breath and I throw what I can at it and hope it sticks. Spaghetti at the wall, as one of my PANDAS/PANS/LYME mom friends tells me. We aren't better "yet" but we will get there.  The moms who walk this path with me are in my head - they get free rent up there, coaching me and speaking words of wisdom from the experience they too wish they never had.

Our hearts are not broken today - we refuse. Today is our first lazy-summer-morning, when we get to veg out all morning long. We need the break. We are warriors, she and I and her little sister, fighting different battlefronts of the same war. The three of us are talking about this journey, exploring the experience, and making decisions about how we handle the rough spots. These are two amazingly strong little girls for all they've been through. I am one incredibly grateful mommy. I am also one incredibly stubborn mommy and I will not stop.

Strength. Love. Hope.

Hope Springs Eternal

Wednesday, April 19, 2017

We have lift-off!  The last two weeks have been a period of steady progress and my heart is full. I made some big changes to our treatment plan and something is working. She has color in her cheeks, her eyes are sparkly, she's happier, tantrums don't last forever, she's gotten dressed by herself for several days now!  I am so happy I want to shout from the rooftop!  And once again, I am reminded that parenting healthy children is infinitely easier than parenting sick children.

I stopped a lot of supplements and two of her three prescriptions, removing one thing at a time and watching for negative reactions. There were no improvements but nothing got worse either. I added a b complex supplement at a very low dose, and some other supplements and therapies.  I also started managing flaring symptoms with a new protocol which worked beautifully against agitation and anxiety. After a week or so I was able to stop the flare protocol and she's been great!

I have been around long enough to know that this may be a short-lived phase, but I have also learned a lot about PANS, the immune system, exotoxicity, and the inflammation process in the body. I feel better armed to handle future flares.

I'm going to just throw caution to the wind and let myself be excited. I'm going to revel in the knowledge that I did something to help my daughter. I'm going to take advantage of this opportunity to breath, relax, and enrich our lives. Focus on enjoying the simple things again and appreciate that we aren't living in a constant state of being on guard.

Strenth. Love. Hope. Resilience. NEVER give up because the end game is priceless.

No Catchy Name...just more of the same

Saturday, March 11, 2017

I don't have much to report. We are still struggling. It is not the worst flare because at least she is...wait, never mind. I've learned not to jinx myself so I don't dare say it. But it is not the worst.

The mornings are just awful and as bad as I remember they were in those early months of crisis when she was five years old. I am trying so hard but I can't help her. I've grown more stressed and reactive. I keep picking myself up and creating all this optimism - I can't help myself - it's what I do. I think, "This afternoon will be different. We will just relax and hang out, have pizza and watch a movie", and before I know it all hell has broken loose. I pick myself up and then come crashing down. Hard. My daughter is screaming because I've asked her to take a break from something, and after 20 minutes of being really calm and patient I am suddenly not. I seem to have a lower level of tolerance and I am crying more.

I am so tired. I am so sad. I feel like this is defining our life and our family and their childhood. Her younger sister just watches all of this go on day after day. After a fun morning of playing outside before school it is time to go and my kindergartner is all buckled in when it starts. "MY PART DOESN'T FEEL RIGHT!" and we're off but standing still. She's been fixating on the part in her hair lately. An OCD fit begins and I feel helpless and hopeless. I sit, emotionless, knowing nothing I do or say will do anything but make it worse. "YOU HAVE TO FIX IT! FIX MY HAIR...NOW!!!"  If I try to fix it, the rage will go on, get louder, and it may never ever end and we will be stuck in this car with the screaming for the REST OF OUR LIVES. That's how it feels in that very moment.  So I either drive to school with her screaming and risk that she won't get out of the car when we get there, or I bring them inside and hope the change of scenery helps me to snap her out of it. We have only 10 minutes wiggle room to get to school on time. We unbuckle, she screams at me, we head inside, I close the door to the outside world again. What is my little kindergartner feeling at that moment; all ready to go to school and out of the blue we are in the midst of chaos, again. It breaks my heart in to a million pieces.

Very quickly I realize this isn't going to be over in 10 minutes, I can't get them to school on time, by little one starts crying because she just wanted to go to school, and I can not seem to hold myself together. I begin to unravel.  I go to my room to focus and get myself pulled together. Pulled together for my kindergartner, pulled together enough to walk in to that school, and pulled together enough to try again and calm her down.

What is going through my little ones head now? Minutes ago, sitting in her car seat, happy; her shining eyes and that smile are etched in to my memory by the familiar look of fear that replaced it in an unforeseeable instant. To be driven because it is a fun change from taking the bus. This happy morning has turned in to a disaster and now instead of being at school before the buses arrive, she'll be 30 minutes late. Instead of chatting on our way to school she has to listen to her sister screaming and crying and carrying on.  I can not seem to hold myself together for the pain and fury of it all. I quiet my voice and tell her it will be okay; that her sister will feel better soon, and that I will not yell. I'm sorry she has to experience this every day.

When they play they yell at each other now. Little arguments become screams - echoing the words shouted during meltdowns and ripping my heart to pieces. They are replaying it all, probably in an effort to work it all out. I want to do so so so much better for them. I want to help them cope and manage all these emotions. I want it so bad I can taste it and feel it but there are days I just don't have anything left to give. I sit and listen to their play and I can not go to them. Every failure on my part depletes my resolve and strips away just a little bit of my optimism. I hope this flare passes and gives us all some relief in time for me to regroup. I want to set a good example for how to handle big emotions and frustrations. I try so hard. Every single day I wake up and go through my plan in my head. Every night I vow to do better the next day. And in between I have wonderful moments and horrible moments and the beat goes on.

This is harder than anything I have ever endured in my life. This feeling that I am absolutely letting my children down. I can not make her better. I can not fix this. I can not heal her. Failing them. Failing myself. Just failing. What my daughter is going through is horrid. It is a monster that is taking over our lives and I hate it. i have to figure something out. figure out how to keep myself whole and keep my children whole. i have to do better. tomorrow i have to do better.

strength love hope

I could make teddy bear pancakes

February 16, 2017

We leave in a couple of hours to see Dr O for more tests and an IV medication to detoxify her system in the hopes that it reduces inflammation and provides healing. I want to test for everything we can this time before our insurance deductible resets in a few weeks. Heavy metals, mold, vitamins, minerals, and the normal ANA, CBC, and CMP.

This morning I let her stay home from school; I would have picked her up 2 hours in to her school day anyway and she can use the rest from this rough week. I also let her stay home because I wanted to give just one peaceful morning to her little sister. My kindergartner woke up before me, got dressed, and was making her bed when I came to her room. She is a child of this illness too but in a different way than her sister. She tries to be extra good, extra sweet, extra loving, to balance out all the yuck that this illness brings to her world. The screaming, the unpredictability, the mommy-time she's robbed of because her sister's needs must be met as they arise, no matter when or where, or else. Waiting on the sidelines so much of the time, I wonder if she is starving for normalcy, calm, attention. What will the story of her childhood be? My energy is focused so much on the story of her sister that I haven't thought about her story so much. One day she will write her story and so as her mother I ask myself, what can I do now to co-author it?

I made chocolate chip pancakes for her in the shape of a teddy bear with a chocolate chip face. This is something I can do. It's not the first time I've done cute little mommy-things but it is the first in a long time and it doesn't ever happen on a school morning. Mornings are too hard. I cut up some fruit too. I even wrote a love note and slipped it in her school lunch bag. A beautiful morning with my little girl who is growing up by leaps and bounds, too quickly.  We had a beautiful morning and the bitter-sweetness caught in my throat and choked me as she waved goodbye through the yellow bus window. This is as it should be.

Her sister played, staying in just her bathrobe so she didn't have to endure the torture of putting clothes on her inflamed body. It's been a very rough week. Sensory, agitation, emotional. Insomnia has been horrid as she's been unable to fall asleep until 10, 11, or 12 o'clock each night. Hyper, manic, agitated. Last night she cried as we began her math homework and I saw for the first time her brain wasn't working right. She struggled with something she does all the time - something that always comes easy to her.

"WHY is this so hard?! Why am I so agitated?!  I don't want to be like this!

None of the other 21 kids in my class have to have needles in their arms for bloodwork!

No one else has this and I don't want to be different!"

Homework was hard and bedtime last night was a challenge but she was asleep by 9:10, likely because she was completely exhausted from the previous nights' sleeplessness. This morning I haven't asked her to do anything but take her lyme herbal water. She's on the Kindle and I'm here doing my therapy writing. I just wanted a peaceful morning, for her sister, for her, and for me. But mostly, for her sister.

My kindergartner and I walked outside to wait for the bus in our front yard. She wore her mixed up outfit that she chose by herself and her self-made ponytail was messily tucked in to her furry hood. It is a sunny, brisk, winter day. Bright blue sky, crisp air, little whispy white puffs sailing by. We laughed about how she could almost stand on top of the foot of snow that had hardened along our driveway. We talked about the mommy-day I would set for her in the coming weeks when just she and I would play hookie from school and go out to lunch. I gave her a bigger hug than usual when the bus pulled up and yelled an extra "I love you" as she rounded the front to get on. She waved as the bus pulled away, making sure to see me. My sweet. I won't be here when she gets home from school and I know that bothers her. It bothers me too. That I am not here for her as I would be without PANS/LYME ruling our world. Thank the universe for Grandma's.

I'm going to make a list of all the things I don't do because of PANS/LYME and then I'm going to start doing them. I'm going to make teddy bear pancakes on school mornings, cut up fresh fruit, talk to my kindergartner as we wait for the bus, and write love notes for lunch boxes. I'm going to make a big list and do everything that I might wish I had done looking back five years from now. If I have to do it in the middle of the night I will. If I can only do it a couple of times a month on days that aren't so hard I will. I will not let this illness take their childhood from me. In 5 years what would I say to myself? "ENJOY every moment you can. FIND them. STEAL them. MAKE them. Don't let them be robbed of you. They are YOUR moments. They are THEIR moments. LIVE them, no matter what."

Got it.

Strength. Love. Hope.