Thursday, September 29, 2016
Today did not get off to a great start. Well, it did and then it did NOT. A goal/reward got her dressed without one tear. Picture day at school was off to a terrific start. Sadly, the part in her hair did not feel good and so it began. Agitation, frustration, anger. Today the invisible cell we live in with this monster illness got chipped and lost some of it's cloak as she continued her rage outside to the bus stop. She could not, would not pull herself together, and I could not, would not, find any sympathy today. This type of thing pushes you to the brink as a parent and I am not always at my best. We are in this together and I am as tortured a soul about mornings as she is. The guilt of not being a supportive, patient parent rips at me until that bus brings her home to my arms and we can heal. A vulnerable, sick child who should not have to endure this needs a parent who can. I will do better.
Warriors
My heart breaks every day and every day I seal it back up with love and hope and strength because there is no other option. Most of the time, love and hope and strength is found in the words, wisdom, and experience of other parents walking this path. Through the glow of our screens we are connected. moms, and a few dads, any time of day or night, across the world, who come to learn, solve, cry, wail, rage, and only rarely laugh. We give and we take and we seal each other back up and we all keep going. Fighting individual battles in the same war, we understand in a way no one else can. We press on.
Wrought with worry for our children, scanning every horizon for the next illness, and inspecting every behavior change for signs of a flare. Lucky for me, one of these moms lives just 15 minutes from us. Trudging along this path far longer than I, she has been sharing her encyclopedic knowledge of autoimmune disorders with me. When we last met at our little local playground I recognized her pain and her tiredness and her fear. I recognized her resolve when she had absolutely nothing left to give. Resolve to save her child. I recognized myself in her and we were instantly connected with no words. And then with lots of words we found support and connection and we were not alone.
Muggles
Although you can not know this life unless you live it, support sometimes comes from people on the outside; muggles. Family members who put themselves in this world with us, offering support in big and small ways, lending a shelter from the storm for this little love of ours. There is not one moment that lacks gratitude in my heart for these people and nothing is taken for granted.
There are old friends who have known us since way back when and remember the early months when I was so confused, my confidence as a parent suddenly shaken as I was quickly losing ground, unable to help my three-year-old daughter. These friends check in from time to time, just a little text to let me know they are thinking of us. Doing their best to understand even though they walk a different path.
Then there are the newer friends who want to learn and understand, who check in, spend time, ask questions, and sometimes just tell me they miss my face. Silver and gold. All of them. Silver and gold. Last week a newer friend of mine, a muggle on the outside looking in, brought me to tears with a simple text message. Having all the reason in the world to focus on her own troubles this friend reached out to let me know she was thinking of us. Sincere in her efforts to understand; asking questions, encouraging me to stay the course, and checking in with hopeful but realistic inquiry. That "realistic" part is a true gift because it means I don't have to disappoint her. She knows. It is a rare person on the "outside" who can even begin to understand our reality so any effort or interest means a great deal. Connection.
Last week was rough. Many have been rough but last week even more so. This is a progressive illness so if we aren't getting better we're getting worse. It was then that the gift of connection came to me from the across the ocean blue. That mother with a seven-year-old girl who had found this blog and recognized her daughter in my words. This mother recognized an opportunity to connect not only for herself but for our children. Brilliant! New pen pals in the making, and my daughter wrote to her new far-away friend, telling someone for the first time what this illness feels like to her. The following day after school, barely putting her backpack down, she read aloud words from the first friend she's ever had who knows exactly what she is going through. A picture of a sweet child and her cat and suddenly my daughter is not alone.
Connection. Powerful. Affirming. This mom's message sent me back to my blog because I realized someone had read my story, and since this story isn't done I needed to keep writing, no matter how painful.
Invisibility
It is hard to dig deep day after day after night after night and then day after day again. And again. And then again. Two months. Last night it was a full hour of sweet chit-chat and gentle little songs before I felt she was ready for the suggestion of sleep. With all my efforts and love and patience and creativity. With all of my deep breaths and grounding games she still began her dance. This terrible bedtime dance of nightmare thoughts and itchy hair, and a hurty neck. "The nightmare thoughts are coming Mommy! I can't make them stop!" Panting and squirming and fearful, unable to accept my comfort. Last night I managed to dig deep and hang in there for another 20 minutes after the first hour and she finally fell off to sleep in my arms. At 9:30 I ate my dinner.
Digging deep is harder some days. This morning, as my beautiful sweet girl yelled and screamed I could not dig deep. I did not yell. I did not cry. I simply shut down and went about my morning. Finally announcing that it was time to get in the car, 30 minutes after she did not get on the bus, I drove her to school with her loud words bursting through her tears. Pulling in to the muggle drop-off line I hugged her through the wetness and told her to get out of the car. Yes my love, they will see that you've been crying. Yes my sweet your eyes will be red and puffy. The invisibility cloak is losing strength and so am I.
Walking Alone Together
But I press on. A few days ago we hit day 11 of a stronger antibiotic, and when my daughter complained of additional symptoms I pulled the plug on it. There are no clear rights and wrongs. There is no instruction booklet. (God how I have always loved the certainty of instruction booklets.) We move on to another med that makes perfect sense in a different way as all the others have and we hope against hope that this will be our fix. We struggle to keep her healthy and free from viral and bacterial infections while we figure out how to help her through this absolutely maddening course of trial and error. Another illness could spiral us out of this universe in to a very scary place. My mind can not go there. Hope. Strength. Resolve.
So I will write again and again and again until there is nothing left to say. Until this child is happily going about her day-to-day activities with all the carefree energy of a typical 7-year-old I will write. Possibly giving connection to someone out there, searching like I have by the glow of this screen for someone who understands and information that will help. I will take those connections that bring us together across the mountains, across the plains, and across the oceans blue. We walk alone together and we will return our children to their beautiful, healthy selves.
Hope. Strength. Resolve. Even when we can't.
Desperation and Thin Air - Coping with the ups and downs
Sunday, September 25, 2016
This evening a stranger, soon to be friend, sent me a message on Facebook from the other side of the world. A warrior mom like me, who had read this blog, found me on Facebook, and reached out to forge a connection. Connections. The stuff of life. Who are we by ourselves? In isolation we feel less. Less joy, less love, less connected, floating along from moment to moment doing what needs to be done. Less is how I have lived for the last two months. Then, suddenly a connection to a woman I know all too well despite the fact that I just met her in the few lines of her message this evening. Again I am reminded that I am not alone.
Disconnecting
For two months I've been disconnecting, smiling politely, painfully participating in small talk. Aching to get the gloom out in to the open, to vomit it out everywhere until there is nothing left to expel. In those moments I would prefer to feel empty than carry this weight in the pit of my stomach and in every pulsing cell of my heart. In a world I suddenly, again, don't belong to I am silenced by the questions I know I won't be able to answer. This invisible monster that has taken up residence inside my child again, robbing her, making her feel different, taking so many moments of her childhood away. I can not answer their questions.
This is not something you can think. This slipping away of your child. It is not "just" sensory and scratchy pants. It is not "just" a meltdown about going to bed. It is not "just" anxiety about school. It is not "just" shyness and something she will outgrow. It is not "JUST" anything. It is huge and ugly and not anything you have experienced if you have a healthy typical child. Yes, even if your child gives you a hard time about sleeping, or climbs in to bed with you when she has a nightmare, even if she doesn't like jeans, tantrums about taking a bath, and won't eat anything but macaroni and cheese. That is NOT what this is. Sadly. How I wish it was just that.
Return of the Invisible Monster
It began in July after the girls had a case of Hand-Foot-Mouth, otherwise known as the Coxsackie virus. A typical childhood virus that is typically endured without much afterthought. At the first sign of illness I held my breath and watched for symptoms. After a few days the coast was clear and I let my guard down. Only looking back more than a month later did I realize the sensory symptoms had started to creep in within two weeks of the illness. At first I simply did what we had learned to do. The things I wrote in my previous hopeful post about sleep, baths, supplements, and rest. One week turned to three and suddenly we were a month out, seeing symptoms increase instead of decrease. A call to our doctor had us change the prophylactic antibiotic from twice weekly to daily. This would surely help except it did not. Shit. Worsening symptoms spiraled us in to the worst flare we've had since onset. Sensory at an all time high, raging, yelling, crying for an hour at a time, unable to fall asleep or stay asleep, nightmares, big fears, racing thoughts, and fixating on things being "just so".
Agitation on high and emotions running wild and all happening within the walls of our cute cute little yellow ranch, on this cute cute little street, in this cute cute little town full of friends and people who never see a damn thing. Invisible. Living in an invisible cell that keeps me from walking freely with the muggles. They can't see in and who would want to, really? Visiting hours occur when we are outside of the walls of our home. People approach, smile and ask how we are doing. It is an impossible question to answer in one short visitation so I politely smile back and walk on. They can not see that we are trapped and there is nothing to be done but keep trying, one medication after another, step by step through the painfully slow treatment plans, not knowing if the current med is helping at all or if the next med just may be the sweet key of release. Sometimes I hate visitation for the normalcy it reminds me we have lost.
Drawn back in to a world I never wanted to visit again, in the dark cool dampness of PANS, watching my daughter sink deeper and deeper, straining to get ahead of her and lift her up, as she continues to slip through my fingers. Sinking. That is what a "relapse" feels like. It is terrifying because we know where it can lead. We know the dark abyss she is slipping into and it does not have a bottom. We can only grasp at whatever tools we have to scoop her out before she goes too far. We don't know what tools will reach her so we just keep trying. We don't know how long it will take or how bad it will get and I miss her terribly.
The Blog No One Reads
It has been two months since my last blog post and I have been thinking about writing. I originally created this blog because I needed to describe our incredible journey. Incredibly difficult. Incredibly painful. Incredibly diabolical PANS. Incredibly miraculous healing. My incredible child returned to me. I needed to document our struggle and recovery to make it real and keep it alive. This blog is public but I had only shared it with two people whom I hardly knew because they needed help. It didn't occur to me that anyone was reading these posts so for the last two months, with little energy to spare, I stayed away. Until tonight. A stranger, soon-to-be friend, messaged me about her daughter, seven years old with a younger sister, similar ages as my girls, with similar names (seriously both names the same except for one letter), similar symptoms, and similar struggles across the ocean blue. Connection.
Gasping in Thin Air
So here I am, sharing my pain and telling you that it is not an easy road to recovery. Sometimes hope must be manufactured out of desperation and thin air. At the end of July we started daily Azithromycin and watched symptoms worsen for three weeks. We then spent four weeks on Cefdinir, adding a few other supplements to heal the gut, watching symptoms worsen. That blood work I had been waiting for back in July showed a doubling ANA number once again. Inflammation and symptoms are rising and we don't know why.
This flare. God I hate the word now. FLARE! It's a FLARE! She's in a flare! How often I've yelled those words at my husband when he is at his wit's end with her "behavior". It's a medical condition but it's so personal it pushes every parenting button you've got. Not to mention the sibling buttons as little sis further torments her as a way of coping, maybe payback, likely both. It's just awfully hard. Especially for the child whose body is raging out of control. "Brain on fire" they say and for us, I would add "skin on fire" too. And this time it all seemed to slam down on me out of thin air.
There were several moments today, and in most days lately, when I felt as though I am gasping for emotional breath. Gasping for strength. Tonight, my hands, one on her heart and one on her head, as she fell asleep clutching my arm with nightmare thoughts torturing her. "I am right here. Everything will be okay." is all I could whisper. My head drops and my soul seeks strength from anywhere, and out of thin air it comes. Tomorrow will be better. I press on.
With strength, hope and love,
Resources: Please feel free to leave a message if you have any questions about my blog or the resources listed below. I will do my best to share what I know.
www.pandasnetwork.org "PANDAS Network"
www.nepans.org "New England PANS PANDAS Association
Facebook Support Groups: Search for group and request to join
PANDAS PARENTS
PANDAS/PANS/Lyme/Tick-Borne Diseases
Parents of Kids with PANDAS/PITAND/PANS
This evening a stranger, soon to be friend, sent me a message on Facebook from the other side of the world. A warrior mom like me, who had read this blog, found me on Facebook, and reached out to forge a connection. Connections. The stuff of life. Who are we by ourselves? In isolation we feel less. Less joy, less love, less connected, floating along from moment to moment doing what needs to be done. Less is how I have lived for the last two months. Then, suddenly a connection to a woman I know all too well despite the fact that I just met her in the few lines of her message this evening. Again I am reminded that I am not alone.
Disconnecting
For two months I've been disconnecting, smiling politely, painfully participating in small talk. Aching to get the gloom out in to the open, to vomit it out everywhere until there is nothing left to expel. In those moments I would prefer to feel empty than carry this weight in the pit of my stomach and in every pulsing cell of my heart. In a world I suddenly, again, don't belong to I am silenced by the questions I know I won't be able to answer. This invisible monster that has taken up residence inside my child again, robbing her, making her feel different, taking so many moments of her childhood away. I can not answer their questions.
This is not something you can think. This slipping away of your child. It is not "just" sensory and scratchy pants. It is not "just" a meltdown about going to bed. It is not "just" anxiety about school. It is not "just" shyness and something she will outgrow. It is not "JUST" anything. It is huge and ugly and not anything you have experienced if you have a healthy typical child. Yes, even if your child gives you a hard time about sleeping, or climbs in to bed with you when she has a nightmare, even if she doesn't like jeans, tantrums about taking a bath, and won't eat anything but macaroni and cheese. That is NOT what this is. Sadly. How I wish it was just that.
Return of the Invisible Monster
It began in July after the girls had a case of Hand-Foot-Mouth, otherwise known as the Coxsackie virus. A typical childhood virus that is typically endured without much afterthought. At the first sign of illness I held my breath and watched for symptoms. After a few days the coast was clear and I let my guard down. Only looking back more than a month later did I realize the sensory symptoms had started to creep in within two weeks of the illness. At first I simply did what we had learned to do. The things I wrote in my previous hopeful post about sleep, baths, supplements, and rest. One week turned to three and suddenly we were a month out, seeing symptoms increase instead of decrease. A call to our doctor had us change the prophylactic antibiotic from twice weekly to daily. This would surely help except it did not. Shit. Worsening symptoms spiraled us in to the worst flare we've had since onset. Sensory at an all time high, raging, yelling, crying for an hour at a time, unable to fall asleep or stay asleep, nightmares, big fears, racing thoughts, and fixating on things being "just so".
Agitation on high and emotions running wild and all happening within the walls of our cute cute little yellow ranch, on this cute cute little street, in this cute cute little town full of friends and people who never see a damn thing. Invisible. Living in an invisible cell that keeps me from walking freely with the muggles. They can't see in and who would want to, really? Visiting hours occur when we are outside of the walls of our home. People approach, smile and ask how we are doing. It is an impossible question to answer in one short visitation so I politely smile back and walk on. They can not see that we are trapped and there is nothing to be done but keep trying, one medication after another, step by step through the painfully slow treatment plans, not knowing if the current med is helping at all or if the next med just may be the sweet key of release. Sometimes I hate visitation for the normalcy it reminds me we have lost.
Drawn back in to a world I never wanted to visit again, in the dark cool dampness of PANS, watching my daughter sink deeper and deeper, straining to get ahead of her and lift her up, as she continues to slip through my fingers. Sinking. That is what a "relapse" feels like. It is terrifying because we know where it can lead. We know the dark abyss she is slipping into and it does not have a bottom. We can only grasp at whatever tools we have to scoop her out before she goes too far. We don't know what tools will reach her so we just keep trying. We don't know how long it will take or how bad it will get and I miss her terribly.
The Blog No One Reads
It has been two months since my last blog post and I have been thinking about writing. I originally created this blog because I needed to describe our incredible journey. Incredibly difficult. Incredibly painful. Incredibly diabolical PANS. Incredibly miraculous healing. My incredible child returned to me. I needed to document our struggle and recovery to make it real and keep it alive. This blog is public but I had only shared it with two people whom I hardly knew because they needed help. It didn't occur to me that anyone was reading these posts so for the last two months, with little energy to spare, I stayed away. Until tonight. A stranger, soon-to-be friend, messaged me about her daughter, seven years old with a younger sister, similar ages as my girls, with similar names (seriously both names the same except for one letter), similar symptoms, and similar struggles across the ocean blue. Connection.
Gasping in Thin Air
So here I am, sharing my pain and telling you that it is not an easy road to recovery. Sometimes hope must be manufactured out of desperation and thin air. At the end of July we started daily Azithromycin and watched symptoms worsen for three weeks. We then spent four weeks on Cefdinir, adding a few other supplements to heal the gut, watching symptoms worsen. That blood work I had been waiting for back in July showed a doubling ANA number once again. Inflammation and symptoms are rising and we don't know why.
This flare. God I hate the word now. FLARE! It's a FLARE! She's in a flare! How often I've yelled those words at my husband when he is at his wit's end with her "behavior". It's a medical condition but it's so personal it pushes every parenting button you've got. Not to mention the sibling buttons as little sis further torments her as a way of coping, maybe payback, likely both. It's just awfully hard. Especially for the child whose body is raging out of control. "Brain on fire" they say and for us, I would add "skin on fire" too. And this time it all seemed to slam down on me out of thin air.
There were several moments today, and in most days lately, when I felt as though I am gasping for emotional breath. Gasping for strength. Tonight, my hands, one on her heart and one on her head, as she fell asleep clutching my arm with nightmare thoughts torturing her. "I am right here. Everything will be okay." is all I could whisper. My head drops and my soul seeks strength from anywhere, and out of thin air it comes. Tomorrow will be better. I press on.
With strength, hope and love,
Resources: Please feel free to leave a message if you have any questions about my blog or the resources listed below. I will do my best to share what I know.
www.pandasnetwork.org "PANDAS Network"
www.nepans.org "New England PANS PANDAS Association
Facebook Support Groups: Search for group and request to join
PANDAS PARENTS
PANDAS/PANS/Lyme/Tick-Borne Diseases
Parents of Kids with PANDAS/PITAND/PANS
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