Monday, February 2, 2020
Lots of gray. Happy, happy, side slammed by hysterics, worries, and a touch of ocd.
Super Monday was not so super. The half-time show last night was a bust. Something happened and although I saw it bubbling for most of the day the eruption still caught me off guard (how the hell does that still happen?). I wasn't prepared for how bad it was and I wasn't prepared to help her - at least not for about 15 minutes. I tried to parent it out of her. Deny it. Consequence it out of her.
Finally, my senses returned and I embraced my PANDAS PANS Mama role. I sat on the bed and opened my arms and she crashed in. Her tear streaked face looking up at me so helplessly, "Mommy I acted like a crazy person. I'm so ashamed."
And I am gutted.
"No honey. You had a really tough time and I didn't help you with it. I'm sorry. It's okay. You're okay. I love you."
Honestly, THIS is what she has to carry? The weight on her shoulders must be crushing. ARGH! How can this be her reality? Fine one day, a mess the next.
My god I'm so filled with anger. Shame overcomes me in those moments because I can't fix this. I have to figure something else out. This isn't working well enough for her. Surrounded by friends with colds and flu mist vaccines (live shedding vaccines) the vitamins are not enough for her. She needs something more.
I'm just so angry. Sadness.
Strength. Love. Hope. (sometimes you fake it til you make it)
Bumping Along, Singing My Song
Thursday, January 23, 2020
I hate to write this post. I'm pissed off actually. She's been bumping along again since September (at least...I think...hard to remember). Multiple flare protocols, upping this, reducing that. Breathing a denial-ridden sigh of relief when she has a good couple of days. Swearing and trying to contain my anger and absolute frustration when it's back.
This morning was scary. Clothes. Nothing felt right. In tears of frustration she looked at me helplessly. Yesterday a beautiful day at the mall. Normal. Mommy-daughter day, shopping and buying some new things. Comfy things. Happy things. Then - it's all bad. Bad. Bad. Bad.
I can barely contain my rage. I am so tired of fighting this for her. So tired of watching her struggle. Filled with worry for what this is doing to her psyche...what it has already done. The shame. The brokenness of it all.
Broken. That's what it feels like. Damaged and broken. Like myself. What to do. What to do. Today, I do not know.
It could be worse.
It was better. A year and a half of better. And now I scurry to try to catch up and get that "better" back.
I think it's too late. That bus has left the station and we're sitting here with PANS. That son-of-a-bitch PANS.
Embrace. Support. Love. Manage.
This is life. The only one she's got. Do better Mama. Do better.
Strength. Hope. Love. I'll pull her through.
xo
I hate to write this post. I'm pissed off actually. She's been bumping along again since September (at least...I think...hard to remember). Multiple flare protocols, upping this, reducing that. Breathing a denial-ridden sigh of relief when she has a good couple of days. Swearing and trying to contain my anger and absolute frustration when it's back.
This morning was scary. Clothes. Nothing felt right. In tears of frustration she looked at me helplessly. Yesterday a beautiful day at the mall. Normal. Mommy-daughter day, shopping and buying some new things. Comfy things. Happy things. Then - it's all bad. Bad. Bad. Bad.
I can barely contain my rage. I am so tired of fighting this for her. So tired of watching her struggle. Filled with worry for what this is doing to her psyche...what it has already done. The shame. The brokenness of it all.
Broken. That's what it feels like. Damaged and broken. Like myself. What to do. What to do. Today, I do not know.
It could be worse.
It was better. A year and a half of better. And now I scurry to try to catch up and get that "better" back.
I think it's too late. That bus has left the station and we're sitting here with PANS. That son-of-a-bitch PANS.
Embrace. Support. Love. Manage.
This is life. The only one she's got. Do better Mama. Do better.
Strength. Hope. Love. I'll pull her through.
xo
I got nothin'
Tuesday, May 14, 2019
Nothing has come of any of it. She's great. She's a moody preteen who just turned ten but she's typical. The little scares never materialized. No flares. No symptoms. Just little bumps in the night that turn out to be nothing but shadows. Shadows of a living nightmare that even the brightest days can't drown out.
So we are cruising. Cruising through 4th grade. Headed towards an amazing summer. Loving life and health. Talking about hormones, boys, and life lessons. Talking about how to cope with disappointments instead of OCD. Talking about being a contributing member of the family instead of trying to talk her down as she crouches terrified on her headboard.
It's incredible. She's incredible.
Strength. Hope. Love.
Nothing has come of any of it. She's great. She's a moody preteen who just turned ten but she's typical. The little scares never materialized. No flares. No symptoms. Just little bumps in the night that turn out to be nothing but shadows. Shadows of a living nightmare that even the brightest days can't drown out.
So we are cruising. Cruising through 4th grade. Headed towards an amazing summer. Loving life and health. Talking about hormones, boys, and life lessons. Talking about how to cope with disappointments instead of OCD. Talking about being a contributing member of the family instead of trying to talk her down as she crouches terrified on her headboard.
It's incredible. She's incredible.
Strength. Hope. Love.
Something's Brewing
March 2, 2019
Well we've had a great run. I can't remember the last bad flare we've had. I found an old post from August that stated we had had a few great weeks so I know it's been at least that long. Now we're getting somewhere.
I thought when things got better I would see it coming. Thought I'd know. Figured I'd be able to point to some new treatment or strategy and say, "Yes! This is what is going to make a difference. Found it!" and then I'd get to watch her health reveal itself in all it's glory. It wasn't at all that way.
I only knew her health had improved when I looked back. As each month passed without a flare I began counting - 1 month, 2 months, 3 months, 4......five potato, six potato, can we get one more?
Oh I'm NOT cocky though. No way. No one who has lived this life would dare. Oh in the beginning I was. Poor, naive, PANDAS PANS Mama. "Hey everyone! I can't believe all she needed was a simple probiotic! She's been perfectly healthy for weeks! Can you believe it? All this time and a little gut health made it all go away" Crash! Bang! Boom! And all the queens horses and all the queens women, couldn't put my child back together again. I probably fell off that wall a few times in all honesty. In fact, this may be the first time I've been humble and super quiet about it. Haven't even written many blog posts about it.
So, this has been an unusual time. Quietly taking it day by day. Working through some rough spots because it hasn't all been sunshine and roses. We'll have a couple of nights here or there when fears and a touch of OCD come to play. A weekend here or there when she's super agitated and emotional. The first few times it happened I panicked and threw everything from my flare protocol at her. Each time she was better within a day or two.
Only recently did I start letting her try to work through these bumps without too much intervention. Maybe just a little extra immune or allergy support.
.
.
.
Hmmmmm....I didn't see this coming.
.
.
.
I was going to write about taking our nutritional support program to the next level to get her over a little hump she seems to be stuck at. I've noticed she's been more unfocused, hyper, sensitive, and having some fears and minor little OCD stuff. I was thinking I needed to get her going with a little more methylation support but now....
Oh crap! I haven't been giving her the whole flare protocol at the first sign of symptoms and NOW I'm seeing other stuff creeping in. Stupid. Stupid. Stupid. I did it again. Why do we keep trying to act like our kids have healthy functioning immune systems even in the face of growing symptoms.
Strength. Hope. Love.
p.s. don't get cocky
Well we've had a great run. I can't remember the last bad flare we've had. I found an old post from August that stated we had had a few great weeks so I know it's been at least that long. Now we're getting somewhere.
I thought when things got better I would see it coming. Thought I'd know. Figured I'd be able to point to some new treatment or strategy and say, "Yes! This is what is going to make a difference. Found it!" and then I'd get to watch her health reveal itself in all it's glory. It wasn't at all that way.
I only knew her health had improved when I looked back. As each month passed without a flare I began counting - 1 month, 2 months, 3 months, 4......five potato, six potato, can we get one more?
Oh I'm NOT cocky though. No way. No one who has lived this life would dare. Oh in the beginning I was. Poor, naive, PANDAS PANS Mama. "Hey everyone! I can't believe all she needed was a simple probiotic! She's been perfectly healthy for weeks! Can you believe it? All this time and a little gut health made it all go away" Crash! Bang! Boom! And all the queens horses and all the queens women, couldn't put my child back together again. I probably fell off that wall a few times in all honesty. In fact, this may be the first time I've been humble and super quiet about it. Haven't even written many blog posts about it.
So, this has been an unusual time. Quietly taking it day by day. Working through some rough spots because it hasn't all been sunshine and roses. We'll have a couple of nights here or there when fears and a touch of OCD come to play. A weekend here or there when she's super agitated and emotional. The first few times it happened I panicked and threw everything from my flare protocol at her. Each time she was better within a day or two.
Only recently did I start letting her try to work through these bumps without too much intervention. Maybe just a little extra immune or allergy support.
.
.
.
Hmmmmm....I didn't see this coming.
.
.
.
I was going to write about taking our nutritional support program to the next level to get her over a little hump she seems to be stuck at. I've noticed she's been more unfocused, hyper, sensitive, and having some fears and minor little OCD stuff. I was thinking I needed to get her going with a little more methylation support but now....
Oh crap! I haven't been giving her the whole flare protocol at the first sign of symptoms and NOW I'm seeing other stuff creeping in. Stupid. Stupid. Stupid. I did it again. Why do we keep trying to act like our kids have healthy functioning immune systems even in the face of growing symptoms.
Strength. Hope. Love.
p.s. don't get cocky
Look Away
Monday, January 7, 2019
I'm not sure what to say but I know if I start typing it will come. We have had a relative state of calm since some time in early September. Regular days of getting dressed and out the door to school. No crying or screaming. No intrusive thoughts or fears. Just a 9-year-old girl and her family doing life.
There have been days though. And a couple of nights. Fears surface and she pleads, "I don't want it to come back! What can we do? I don't want it to come back!" Panic moves in quickly and I open the cabinet, scanning, calculating symptoms and likely causes so the correct supplement can be administered. A day later calm returns and there is no flare.
Three or four times this has happened. Once, it was two nights in a row and I was terrified but each time, things settle and we breath and we move and on and look forward. I consciously superficially forget. Block it out. Not now. We aren't there and I won't look. If we make eye contact it might rear it's ugly head so we turn away and look forward and keep moving. Quickly. Keep moving.
This morning it happened. Reminds me that it also happened once or twice over the last couple of weeks. Hmmmm. Well, I guess the hyperactivity has been there for quite some time too but that is nothing compared to the something we usually have. But this morning, socks didn't feel right. Couldn't get out the door. This morning was a flashback - screaming, begging me not to leave her inside. I told her sister I'd play basketball with her while we waited for the bus. "Sophie's Chose" not quite but I can relate. Let my little one know that she gets left behind anytime and anywhere her sister says? Abandon my big girl in the house, frightened and alone as I turn my back? I played basketball...I think. But then I was inside helping to loosen a sneaker. Those were too tight. Bag was too heavy. Socks were awful. Oh and now at age 9-tween, it's all my fault. That's a nice new twist.
So this morning I'm doing my calculations again. Front-end or back-end methylation? The B3 helps but maybe pushed something back to NOS or yeast or gluatamate or NRF2 or TH17. I don't really know what I'm talking about. I have my own issues cognitively. No long-term memory storage or at least no recall. It's almost as if I have to re-learn with every flare. Basics are easy. A+B=C. Excess ammonia + moly or l-cit = mop it up. Yeast overgrowth + difulcan + charcoal = relief. But maybe it's viral so we need more A, D, Zinc, C. Maybe it's histamine from a playdate with a friend and her cat. Some AS-Gold and bene might help.
Have I ever written about how tired I am? I shouldn't complain because we've had an AMAZING run. I'm not going to complain because I'll probably be punished which means she'll be punished and our family will be broken again.
Look forward. Don't stare it in the eyes. Back slowly away, no sudden movements. Quietly dust off a couple of sups. We're f.i.n.e. Just fine.
Peace. Hope. Love. (sometimes there is no strength but it will come when we need it)
I'm not sure what to say but I know if I start typing it will come. We have had a relative state of calm since some time in early September. Regular days of getting dressed and out the door to school. No crying or screaming. No intrusive thoughts or fears. Just a 9-year-old girl and her family doing life.
There have been days though. And a couple of nights. Fears surface and she pleads, "I don't want it to come back! What can we do? I don't want it to come back!" Panic moves in quickly and I open the cabinet, scanning, calculating symptoms and likely causes so the correct supplement can be administered. A day later calm returns and there is no flare.
Three or four times this has happened. Once, it was two nights in a row and I was terrified but each time, things settle and we breath and we move and on and look forward. I consciously superficially forget. Block it out. Not now. We aren't there and I won't look. If we make eye contact it might rear it's ugly head so we turn away and look forward and keep moving. Quickly. Keep moving.
This morning it happened. Reminds me that it also happened once or twice over the last couple of weeks. Hmmmm. Well, I guess the hyperactivity has been there for quite some time too but that is nothing compared to the something we usually have. But this morning, socks didn't feel right. Couldn't get out the door. This morning was a flashback - screaming, begging me not to leave her inside. I told her sister I'd play basketball with her while we waited for the bus. "Sophie's Chose" not quite but I can relate. Let my little one know that she gets left behind anytime and anywhere her sister says? Abandon my big girl in the house, frightened and alone as I turn my back? I played basketball...I think. But then I was inside helping to loosen a sneaker. Those were too tight. Bag was too heavy. Socks were awful. Oh and now at age 9-tween, it's all my fault. That's a nice new twist.
So this morning I'm doing my calculations again. Front-end or back-end methylation? The B3 helps but maybe pushed something back to NOS or yeast or gluatamate or NRF2 or TH17. I don't really know what I'm talking about. I have my own issues cognitively. No long-term memory storage or at least no recall. It's almost as if I have to re-learn with every flare. Basics are easy. A+B=C. Excess ammonia + moly or l-cit = mop it up. Yeast overgrowth + difulcan + charcoal = relief. But maybe it's viral so we need more A, D, Zinc, C. Maybe it's histamine from a playdate with a friend and her cat. Some AS-Gold and bene might help.
Have I ever written about how tired I am? I shouldn't complain because we've had an AMAZING run. I'm not going to complain because I'll probably be punished which means she'll be punished and our family will be broken again.
Look forward. Don't stare it in the eyes. Back slowly away, no sudden movements. Quietly dust off a couple of sups. We're f.i.n.e. Just fine.
Peace. Hope. Love. (sometimes there is no strength but it will come when we need it)
The Hostage Crisis - 7 Days in May
Wednesday, May 16, 2018
It happened again. My child's mind was taken hostage for a week without warning. She caught a cold and lost her right mind. Seven days and seven nights. All the symptoms of a serious mental illness. If you know my daughter you would have been shocked to peek through the window to our world that week. You would not have believed your eyes. If you don't know my daughter, you would have assumed she was a child living life with severe anxiety and Obsessive Compulsive Disorder. If you loved my daughter, your heart would have been torn to shreds.
As a family, we are shredded but holding on to strings. Hoping to mend our hearts quickly before they are torn again. Hoping for a reprieve in between the hard stuff, to catch our breath, breath deeply, rest, and live life in the normal for just a little while.
Stealth Enemy
After a persistent flare settled in from November to February, my daughter had been doing better but bumping along with some low level worry and mild sensory symptoms as her immune system fought off the onslaught of seasonal allergens. I kept a close eye, increased antihistamines, and waited for the allergies and symptoms to subside. BUMP...Bump...bump....little bump...progress. Not too bad.
One week before Mother's Day, the floor dropped out from underneath us like that amusement park ride that leaves your stomach two stories above your heart. She had caught a cold a few days prior which included a lot of congestion and a cold sore. Within days her mild symptoms exploded in to debilitating compulsions that turned her world and ours, upside down. Suddenly wracked with the need to repeatedly wash her "sticky hands" that were not. Compelled to smooth her bed sheets to perfection, removing every wrinkle and aligning them so they lay only 1 foot from the bottom of her bed, no more. Forced by an enemy from within to get out of bed, multiple times, and fix every little thing in her room, through tears she cried out of pure exhaustion.
A PANS Story, Author OCD
It's story time my little dear, just lie down, I'll dry your tears.
UP! Up! up! Straighten up those books!
That's much better now, just don't look.
Lie down love and snuggle in, you've done well...
but I'll still win.
Once upon a time. GET UP! That one's not right, it must be tight!
Get in bed that should be it, I might let you rest a bit.
One, two, three, you can't catch me, I'll make you climb the coconut tree!
UP and up and down again, align the figurines by ten.
Now lie back down, it's all just right,
no, no, no, not tonight!
UP! to hide the messy shelves,
down, up, down, won't fix themselves!
Clear the desk, the toys, the shoes!
Okay, I suppose that's enough for you.
We've done so much together today,
Goodnight my friend,
tomorrow we'll play.
by: OCD
A perfectly happy and typical child is thrown in to the hell of medically induced mental illness, literally overnight. When this happens an experienced PANS mom instantly becomes "warrior" armed for battle and with ninja-like skills, begins administering treatment protocols. The last invasive most natural options are selected first because sometimes a few supplements help to balance the system and settled the flare. Precision focus on every nuance of behavior informs decisions and adjustments to the treatment plan are made. Help has to come quickly because every day, even every hour counts. A new symptom may appear at any moment; a symptom that those "other" PANS kids have but not us. (I wonder if other moms do that thing, that "them not us" thing. Comparing their child's symptoms to others in the groups, in order to reassure themselves that things really aren't that bad....at least not yet.)
The Power of Yet
On the positive side of yet we have hope that our day will come. "She isn't better, yet." "She can't get dressed without extreme sensory trauma, yet." "She can't get a cold without losing her mind, yet." On the terrifying side of "yet", it's icy cold hands grab your heart, striking fear that one day your time will come. "She doesn't have motor tics, yet." "She isn't refusing to go to school, yet." "No one outside of our home sees her illness, yet." "She isn't refusing to eat and needing a feeding tube, yet."
As always, life is a matter of perspective. You learn to live with the yet. The hope and the fear. The dream and the reality. Ying and yang. Dark and light. Day and night. Not yet.
This time, the treatment protocols that had worked in the past, failed us. On day five I started to consider the antibiotic but held off. On day six I had run out of treatment options and was more terrified of what I was seeing than I had been in 2.5 years. One dose of antibiotics the night before Mother's Day didn't help with the next morning's routine. I can see it in the pictures. A mother, smiling in the bright sunlight, a daughter in each arm. One light. One dark. Not just in clothing but in expression and coloring and health. Second dose that morning and we wait. A lovely day with my mother and the trepidation of the bedtime routine begins as we drive home.
Story time brought the greatest Mother's Day gift of them all, a child's sanity restored. "Mommy! The OCD is telling me to get up and fix that book and I don't have to do it!" My breath flows effortlessly for the first time in seven nights. Oxygen. "Once upon a time..." "Mommy! It's telling me to fix that toy too but I don't have to! eeeeee!"
Beaming, happy, quiet mind. Lying with sheets askew, toys misaligned, and messy shelves a showin', my baby lay down her head and fell peacefully to sleep. I took a picture and it is not my imagination that you can see the difference that 24 hours had made. Two doses of azithromycin either worked by striking whatever infection was there, or more likely, worked to reduced TNF alfa and brought my daughter back to her self.
Lemons and Lemonade
PANS is cruel. It shows up when least expected, rarely calls ahead, and doesn't leave even when you kick and scream. After years of struggling, we can't decide which is worse; the symptoms themselves or the not knowing. Not knowing when another flare will hit. Not knowing how bad it will get. Not knowing what flare treatment to try first. Not knowing if any of the treatments will work. Not knowing if this might be the one. The one that plunges her in to the deep dark nightmare of PANS that so many children can not seem to awaken from despite the best of the best medical care.
For now we are grateful. In addition to the nightmare, PANS has also brought life lessons. Lessons in letting go and living each day to it's fullest. Enjoying the good days. Not holding back our joy, despite the reality that the other shoe will surely drop...and it's a big shoe. The bad days give us plenty of time to suffer so we've decided we won't go there until they are upon us. I'm not sure it's the PANS that has taught me this, as much as it my daughter has. Her memory is short for pain and suffering. She lives in the moment like no one I've ever seen can.
Answers
As I continue to search for clues as to what lies beneath the instability of her immune system, my hope is that one day we will put PANS behind us. I dig my nails in to the hope of forgetting, the hope of moving on, even as I know full well that PANS will always be with us. As it silently slips in and out of the recesses of our memory long after the illness itself is gone, the scars of PANS will remain on our hearts and in our souls forever. One can't live through a hell like this and not be changed. The sorrow and weight of that reality can be suffocating to a mother who only wanted to give her children the very best start in life, the most happiest of childhoods, and the most loveliest of memories.
Still, there can be joy, there can be strength, there can be hope, there can be love. We haven't healed her...yet.
Strength. Hope. Love. PANS.
It happened again. My child's mind was taken hostage for a week without warning. She caught a cold and lost her right mind. Seven days and seven nights. All the symptoms of a serious mental illness. If you know my daughter you would have been shocked to peek through the window to our world that week. You would not have believed your eyes. If you don't know my daughter, you would have assumed she was a child living life with severe anxiety and Obsessive Compulsive Disorder. If you loved my daughter, your heart would have been torn to shreds.
As a family, we are shredded but holding on to strings. Hoping to mend our hearts quickly before they are torn again. Hoping for a reprieve in between the hard stuff, to catch our breath, breath deeply, rest, and live life in the normal for just a little while.
Stealth Enemy
After a persistent flare settled in from November to February, my daughter had been doing better but bumping along with some low level worry and mild sensory symptoms as her immune system fought off the onslaught of seasonal allergens. I kept a close eye, increased antihistamines, and waited for the allergies and symptoms to subside. BUMP...Bump...bump....little bump...progress. Not too bad.
One week before Mother's Day, the floor dropped out from underneath us like that amusement park ride that leaves your stomach two stories above your heart. She had caught a cold a few days prior which included a lot of congestion and a cold sore. Within days her mild symptoms exploded in to debilitating compulsions that turned her world and ours, upside down. Suddenly wracked with the need to repeatedly wash her "sticky hands" that were not. Compelled to smooth her bed sheets to perfection, removing every wrinkle and aligning them so they lay only 1 foot from the bottom of her bed, no more. Forced by an enemy from within to get out of bed, multiple times, and fix every little thing in her room, through tears she cried out of pure exhaustion.
A PANS Story, Author OCD
It's story time my little dear, just lie down, I'll dry your tears.
UP! Up! up! Straighten up those books!
That's much better now, just don't look.
Lie down love and snuggle in, you've done well...
but I'll still win.
Once upon a time. GET UP! That one's not right, it must be tight!
Get in bed that should be it, I might let you rest a bit.
One, two, three, you can't catch me, I'll make you climb the coconut tree!
UP and up and down again, align the figurines by ten.
Now lie back down, it's all just right,
no, no, no, not tonight!
UP! to hide the messy shelves,
down, up, down, won't fix themselves!
Clear the desk, the toys, the shoes!
Okay, I suppose that's enough for you.
We've done so much together today,
Goodnight my friend,
tomorrow we'll play.
by: OCD
A perfectly happy and typical child is thrown in to the hell of medically induced mental illness, literally overnight. When this happens an experienced PANS mom instantly becomes "warrior" armed for battle and with ninja-like skills, begins administering treatment protocols. The last invasive most natural options are selected first because sometimes a few supplements help to balance the system and settled the flare. Precision focus on every nuance of behavior informs decisions and adjustments to the treatment plan are made. Help has to come quickly because every day, even every hour counts. A new symptom may appear at any moment; a symptom that those "other" PANS kids have but not us. (I wonder if other moms do that thing, that "them not us" thing. Comparing their child's symptoms to others in the groups, in order to reassure themselves that things really aren't that bad....at least not yet.)
The Power of Yet
On the positive side of yet we have hope that our day will come. "She isn't better, yet." "She can't get dressed without extreme sensory trauma, yet." "She can't get a cold without losing her mind, yet." On the terrifying side of "yet", it's icy cold hands grab your heart, striking fear that one day your time will come. "She doesn't have motor tics, yet." "She isn't refusing to go to school, yet." "No one outside of our home sees her illness, yet." "She isn't refusing to eat and needing a feeding tube, yet."
As always, life is a matter of perspective. You learn to live with the yet. The hope and the fear. The dream and the reality. Ying and yang. Dark and light. Day and night. Not yet.
This time, the treatment protocols that had worked in the past, failed us. On day five I started to consider the antibiotic but held off. On day six I had run out of treatment options and was more terrified of what I was seeing than I had been in 2.5 years. One dose of antibiotics the night before Mother's Day didn't help with the next morning's routine. I can see it in the pictures. A mother, smiling in the bright sunlight, a daughter in each arm. One light. One dark. Not just in clothing but in expression and coloring and health. Second dose that morning and we wait. A lovely day with my mother and the trepidation of the bedtime routine begins as we drive home.
Story time brought the greatest Mother's Day gift of them all, a child's sanity restored. "Mommy! The OCD is telling me to get up and fix that book and I don't have to do it!" My breath flows effortlessly for the first time in seven nights. Oxygen. "Once upon a time..." "Mommy! It's telling me to fix that toy too but I don't have to! eeeeee!"
Beaming, happy, quiet mind. Lying with sheets askew, toys misaligned, and messy shelves a showin', my baby lay down her head and fell peacefully to sleep. I took a picture and it is not my imagination that you can see the difference that 24 hours had made. Two doses of azithromycin either worked by striking whatever infection was there, or more likely, worked to reduced TNF alfa and brought my daughter back to her self.
Lemons and Lemonade
PANS is cruel. It shows up when least expected, rarely calls ahead, and doesn't leave even when you kick and scream. After years of struggling, we can't decide which is worse; the symptoms themselves or the not knowing. Not knowing when another flare will hit. Not knowing how bad it will get. Not knowing what flare treatment to try first. Not knowing if any of the treatments will work. Not knowing if this might be the one. The one that plunges her in to the deep dark nightmare of PANS that so many children can not seem to awaken from despite the best of the best medical care.
For now we are grateful. In addition to the nightmare, PANS has also brought life lessons. Lessons in letting go and living each day to it's fullest. Enjoying the good days. Not holding back our joy, despite the reality that the other shoe will surely drop...and it's a big shoe. The bad days give us plenty of time to suffer so we've decided we won't go there until they are upon us. I'm not sure it's the PANS that has taught me this, as much as it my daughter has. Her memory is short for pain and suffering. She lives in the moment like no one I've ever seen can.
Answers
As I continue to search for clues as to what lies beneath the instability of her immune system, my hope is that one day we will put PANS behind us. I dig my nails in to the hope of forgetting, the hope of moving on, even as I know full well that PANS will always be with us. As it silently slips in and out of the recesses of our memory long after the illness itself is gone, the scars of PANS will remain on our hearts and in our souls forever. One can't live through a hell like this and not be changed. The sorrow and weight of that reality can be suffocating to a mother who only wanted to give her children the very best start in life, the most happiest of childhoods, and the most loveliest of memories.
Still, there can be joy, there can be strength, there can be hope, there can be love. We haven't healed her...yet.
Strength. Hope. Love. PANS.
Wishes
Thursday, May 2, 2018
The moments that catch your heart off guard. "The Wishing Wall" in my daughter's classroom. We were flitting from place to place during Open House tonight, seeing her classroom and all of her work. A happy, carefree evening until this hit me like a punch in the gut. School has been the place she goes to forget. To be "normal". She fits in. We're lucky for that. This year has been different though. She's told a few friends about PANS. She chose it as the topic when she had to write a book earlier this year. And now, it's the first thing on her wish list. It's showing. It's on her mind.
Strangely, for me, seeing this on that wall with all the other 9yo wishes made it more real to me. Even after all these years it's still sinking in.
Strength. Love. Hope.
The moments that catch your heart off guard. "The Wishing Wall" in my daughter's classroom. We were flitting from place to place during Open House tonight, seeing her classroom and all of her work. A happy, carefree evening until this hit me like a punch in the gut. School has been the place she goes to forget. To be "normal". She fits in. We're lucky for that. This year has been different though. She's told a few friends about PANS. She chose it as the topic when she had to write a book earlier this year. And now, it's the first thing on her wish list. It's showing. It's on her mind.
Strangely, for me, seeing this on that wall with all the other 9yo wishes made it more real to me. Even after all these years it's still sinking in.
Strength. Love. Hope.
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