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.
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 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.
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.
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.
If only
February 10, 2017
I rocked and sang a sweet lullaby as she nursed and drifted off to sleep. Rain sounds gently calming and the twinkling star lights fading red, blue, and green on the walls of her her nursery room, I let the busyness of our day slip away. I thought I heard a sound break through the pittering rain. Rocking more slowly, an ear turned towards the mostly closed door. Yes, there it is again. My 3-year-old's voice, piercing the calm as she pleads with her daddy about some issue with her own little bedtime routine. Waiting. Listening. Yes something is up. I gently laid little sis down on her bed and quickly slipped away. What could this be? So unusual. Their routine is counted upon every single night. I wonder, as I turn to follow the banister that lead to her bedroom, what could be wrong.
It was the first of what would become years of struggle. Our beautiful three-year-old daughter suddenly fighting her bedtime routine was not just unusual, it was unheard of. Every night since she was a baby had been a sweet ending of our day. My husband and I used to take turns putting her to bed and sometimes I'd negotiate to get two days in a row. It was that good. Consistent, sweet, calming, our special time. Read stories in the rocking chair then settle her in to bed. Sing her special lullaby twice, hum it a few more times, kiss her goodnight and watch her snuggle in. One more kiss from the door, "I love you", and all was right with the world.
My husband and I used to laugh when we'd hear her little footsteps quietly patter across the floor, we'd look up at the ceiling as if we could see what she was doing. She always settled down quickly though. Such a good little one. During my last check of the night I'd often call my husband in to see what the activity had been. One night she lay on a sliver of bed that was not covered with "friends", wearing a tutu over her jammies, a pink cowgirl hat by her head, her new stick-horse next to her. What I wouldn't give to have one of those nights back. She always loved her special goodnight time with mom or dad and felt safe in her crib or bed. It is hard now, to remember.
Suddenly, it changed. Night after night without warning. Happy, sleepy, cuddly, stories. Tucking in and lullabies. The light turned off and up she would sit, proclaiming that she was NOT ready to go to sleep. I tried my up-until-this-point-highly-effective style of rational parenting and boundary setting. "This is not what we do at bedtime. At bedtime, you are in your bed, Mommy and Daddy tuck you in, and you lie down to rest. This is what we do. This is not a choice." It was as if my words simply bounced off of some invisible shield that was holding her hostage; I could not reach her. Screaming and crying, sitting on her pillow or standing in the far corner of her bed she bellowed that she was not tired and was not ready to go to sleep yet. We had never experienced this level of defiance. We didn't understand it. Couldn't make any sense of it.
It was a few days in to this new bedtime refusal, during another one of my very reasonable expectation setting discussions, that I realized there was something more to this than a preschooler testing her boundaries. As she argued her point, solidly dug in and unmoving, I saw my words had no sound in her ears. If she were simply testing her boundaries my steadfastness would have weakened her resolve but she was not with us. There was something about her that wasn't right. I stopped talking, sat on her bed, opened my arms. In she crashed. I held her to my chest, rocking her gently. After a few minutes I softly asked what was wrong. In her little fragile voice, I heard the words that broke my mommy heart for the first time in my parenting life.
She sobbed and sobbed and I sat stunned for a half-second-hour. Oh my god. Scooping her up in my arms I lied to stop her hurt. "Honey, I'm not going to die. I'm right here and I'm always going to be here. What made you think of that?" She was not comforted.
I talked and talked and lied our way out of this conversation. I would not die until she was very old. Maybe by then there would be medicine so none of us had to die. Please don't think of it my love. I am your mommy and I will always be here with you. I held her tight and from that night on one of us has sat with her until she falls asleep. That was then. This is now. Three nights ago, as I sat with her for what ended up being 2 hours until she fell asleep, I felt her bed shake just a bit. "Are you okay, honey?" In a split-second this almost 8-year-old was in my arms crying, "I'm having bad thoughts Mommy." It took her several attempts to explain, because I couldn't understand through her sobs. "I don't want to lose you. I don't want you to die." How many times will she have to endure this pain? I so badly want to take her pain away but I can not. I am not able to fix this. All I can do is try to use this illness to make her stronger, but I can not fix this.
It is worse when she is sicker, and better when she is more well. During the rough times she wakes multiple times a night. She isn't fighting sleep when she wakes in the middle of the night; it just won't come to her and she doesn't want to be alone. If we stay with her she lies quietly, content to just have us there while she rests. It's been like this since that first night when she was three years old. In those early months we thought sleeping with her would reinforce the behavior but we had no choice. We were beat. We needed sleep. We couldn't get up multiple times a night, sit with her for 45 minutes, and then be woken up again less than an hour later. I didn't know much back then but I knew something wasn't right. A child should not have this type of insomnia. So started our calls to the pediatrician, trials of melatonin, reward systems, and calming techniques. And so started our journey to PANS and Lyme.
Gone was our carefree child who loved to snuggle into her bed and tiptoe around in the dark when we weren't looking. Gone was our brave little girl who used to get up and use the bathroom in the middle of the night and tuck herself back in to bed without even asking for us. Gone was a part of her childhood that we would never get back. It was only the beginning. If only I had known then what I know now maybe I could have stopped the onslaught. More fears would come. More anxiety. More physical symptoms; skin-on-fire-sensory, insomnia, urinary issues, lack of appetite. Suffering and more suffering.
I wracked my brain to connect all of this behavior to something. I googled, talked, chatted, posted, libraried, researched, and tried every tip I was given. Only later would I recognize this sudden change as the "sudden onset" of a horrid medical condition. If only I had known then what I know now. Damn it. I could have DONE something then.
If I could have one wish, it might be to go back to that first night, knowing what I know now. Or maybe it would be back to her first vaccination, her first ear infection, her first breath. Oh if I could give her breast milk to provide her immune system with healing from that first moment. If I could be more judicious with vaccinations and provide detoxification support after every one. I'd skip the flu shots, give her probiotics every day, and make sure she had quality vitamins. I'd go back to that night and hold her and let her sleep in my arms. The next morning I'd get her started on the herbal antibiotics and antivirals. I'd do all kinds of things to stop this illness form spiraling out of control and hijacking her childhood.
I don't live with regret but there is so much I would do differently. The only useful thing about regret is to recognize it and make sure you don't repeat the thing that brought it to life. What would my five-years-from-now self, say to me? What advice would I give me? What would I tell myself to do now instead of waiting. I couldn't help her then but I can help her now. I have to be able to help her.
Strength. Love. Hope.
I rocked and sang a sweet lullaby as she nursed and drifted off to sleep. Rain sounds gently calming and the twinkling star lights fading red, blue, and green on the walls of her her nursery room, I let the busyness of our day slip away. I thought I heard a sound break through the pittering rain. Rocking more slowly, an ear turned towards the mostly closed door. Yes, there it is again. My 3-year-old's voice, piercing the calm as she pleads with her daddy about some issue with her own little bedtime routine. Waiting. Listening. Yes something is up. I gently laid little sis down on her bed and quickly slipped away. What could this be? So unusual. Their routine is counted upon every single night. I wonder, as I turn to follow the banister that lead to her bedroom, what could be wrong.
It was the first of what would become years of struggle. Our beautiful three-year-old daughter suddenly fighting her bedtime routine was not just unusual, it was unheard of. Every night since she was a baby had been a sweet ending of our day. My husband and I used to take turns putting her to bed and sometimes I'd negotiate to get two days in a row. It was that good. Consistent, sweet, calming, our special time. Read stories in the rocking chair then settle her in to bed. Sing her special lullaby twice, hum it a few more times, kiss her goodnight and watch her snuggle in. One more kiss from the door, "I love you", and all was right with the world.
My husband and I used to laugh when we'd hear her little footsteps quietly patter across the floor, we'd look up at the ceiling as if we could see what she was doing. She always settled down quickly though. Such a good little one. During my last check of the night I'd often call my husband in to see what the activity had been. One night she lay on a sliver of bed that was not covered with "friends", wearing a tutu over her jammies, a pink cowgirl hat by her head, her new stick-horse next to her. What I wouldn't give to have one of those nights back. She always loved her special goodnight time with mom or dad and felt safe in her crib or bed. It is hard now, to remember.
Suddenly, it changed. Night after night without warning. Happy, sleepy, cuddly, stories. Tucking in and lullabies. The light turned off and up she would sit, proclaiming that she was NOT ready to go to sleep. I tried my up-until-this-point-highly-effective style of rational parenting and boundary setting. "This is not what we do at bedtime. At bedtime, you are in your bed, Mommy and Daddy tuck you in, and you lie down to rest. This is what we do. This is not a choice." It was as if my words simply bounced off of some invisible shield that was holding her hostage; I could not reach her. Screaming and crying, sitting on her pillow or standing in the far corner of her bed she bellowed that she was not tired and was not ready to go to sleep yet. We had never experienced this level of defiance. We didn't understand it. Couldn't make any sense of it.
It was a few days in to this new bedtime refusal, during another one of my very reasonable expectation setting discussions, that I realized there was something more to this than a preschooler testing her boundaries. As she argued her point, solidly dug in and unmoving, I saw my words had no sound in her ears. If she were simply testing her boundaries my steadfastness would have weakened her resolve but she was not with us. There was something about her that wasn't right. I stopped talking, sat on her bed, opened my arms. In she crashed. I held her to my chest, rocking her gently. After a few minutes I softly asked what was wrong. In her little fragile voice, I heard the words that broke my mommy heart for the first time in my parenting life.
"Mommy, I don't want you to get old. You will die and leave me and I don't want to
be here without you. Mommy I will miss you and I don't want you to die!"
She sobbed and sobbed and I sat stunned for a half-second-hour. Oh my god. Scooping her up in my arms I lied to stop her hurt. "Honey, I'm not going to die. I'm right here and I'm always going to be here. What made you think of that?" She was not comforted.
"But when you are old you are going to die right? And I don't want to be here
without you. Mommy when you die I want to die with you."
Shattered.
I talked and talked and lied our way out of this conversation. I would not die until she was very old. Maybe by then there would be medicine so none of us had to die. Please don't think of it my love. I am your mommy and I will always be here with you. I held her tight and from that night on one of us has sat with her until she falls asleep. That was then. This is now. Three nights ago, as I sat with her for what ended up being 2 hours until she fell asleep, I felt her bed shake just a bit. "Are you okay, honey?" In a split-second this almost 8-year-old was in my arms crying, "I'm having bad thoughts Mommy." It took her several attempts to explain, because I couldn't understand through her sobs. "I don't want to lose you. I don't want you to die." How many times will she have to endure this pain? I so badly want to take her pain away but I can not. I am not able to fix this. All I can do is try to use this illness to make her stronger, but I can not fix this.
It is worse when she is sicker, and better when she is more well. During the rough times she wakes multiple times a night. She isn't fighting sleep when she wakes in the middle of the night; it just won't come to her and she doesn't want to be alone. If we stay with her she lies quietly, content to just have us there while she rests. It's been like this since that first night when she was three years old. In those early months we thought sleeping with her would reinforce the behavior but we had no choice. We were beat. We needed sleep. We couldn't get up multiple times a night, sit with her for 45 minutes, and then be woken up again less than an hour later. I didn't know much back then but I knew something wasn't right. A child should not have this type of insomnia. So started our calls to the pediatrician, trials of melatonin, reward systems, and calming techniques. And so started our journey to PANS and Lyme.
Gone was our carefree child who loved to snuggle into her bed and tiptoe around in the dark when we weren't looking. Gone was our brave little girl who used to get up and use the bathroom in the middle of the night and tuck herself back in to bed without even asking for us. Gone was a part of her childhood that we would never get back. It was only the beginning. If only I had known then what I know now maybe I could have stopped the onslaught. More fears would come. More anxiety. More physical symptoms; skin-on-fire-sensory, insomnia, urinary issues, lack of appetite. Suffering and more suffering.
I wracked my brain to connect all of this behavior to something. I googled, talked, chatted, posted, libraried, researched, and tried every tip I was given. Only later would I recognize this sudden change as the "sudden onset" of a horrid medical condition. If only I had known then what I know now. Damn it. I could have DONE something then.
If I could have one wish, it might be to go back to that first night, knowing what I know now. Or maybe it would be back to her first vaccination, her first ear infection, her first breath. Oh if I could give her breast milk to provide her immune system with healing from that first moment. If I could be more judicious with vaccinations and provide detoxification support after every one. I'd skip the flu shots, give her probiotics every day, and make sure she had quality vitamins. I'd go back to that night and hold her and let her sleep in my arms. The next morning I'd get her started on the herbal antibiotics and antivirals. I'd do all kinds of things to stop this illness form spiraling out of control and hijacking her childhood.
I don't live with regret but there is so much I would do differently. The only useful thing about regret is to recognize it and make sure you don't repeat the thing that brought it to life. What would my five-years-from-now self, say to me? What advice would I give me? What would I tell myself to do now instead of waiting. I couldn't help her then but I can help her now. I have to be able to help her.
Strength. Love. Hope.
Up and down and round and round
February 8, 2017
We are in our third month of herbal lyme treatment and the ups and downs keep coming. A few weeks ago it started up again - those horrible symptoms. Armed with some new tools of attack I think we have been able to keep things at bay. Maybe.
She is up to multiple supplements in the morning and that in and of itself is taking it's toll. I hate to take my vitamins so I can imagine what it feels like to a seven-year-old little girl to take so many. I was hard on her this morning. I just wanted her to take her pills and it had been 20 minutes of fiddling with them and complaining. I tried empathy. It's time to brush teeth and hair. I tried encouragement. We only have 10 more minutes until the bus gets here. I tried the threat of consequence. It's TIME! I finally took them away and told her to go out to the bus. That is the greatest threat of all because she fears what will happen if she doesn't take them. Running around me she grabbed them from the counter and began. She fears the crushing sensory symptoms that may escalate. She is terrified of the scary thoughts that could come crashing in to her brain without invite, no way to push them out. She hates the insomnia that keeps her awake for hours and hours because it usually gets the better of her and then of me and the crying and yelling ensues.
How did this happen? Why? I don't often go there. I'm always looking forward, focused on what to do next. We're trying to get b vitamins balanced, adding minerals, and lots of anti-inflammatory and liver-detox support. I think it's helping but it's a lot to take - literally a lot of pills to take. After a morning like today's, I reassess to see if I can safely remove a couple of pills. Just to ease the burden on this little girl.
Then again, we are lucky right? It could be worse. At least she is "healthy" and not fighting something worse. So maybe she needs to suck it up and take eleven. Big deal, right? At least we can fight and there is hope. Some kids have so little hope. Some kids are fighting something that is ultimately going to win. She will win this battle so the focus needs to be on sustaining her as we go. At least she is home and comfortable and able to go to school and enjoy good friendships. She is learning and playing as she should be. It's just this other stuff she's got to handle. And there it is. Perspective. Never takes me too long.
So how can I better sustain her and hold her up? How can I strengthen her and her resolve? I tell her she is strong and brave and conquering it all. I think she believes me. Most of the time. When she's not just too damn tired of it all.
Me too. I'll do better.
Strength. Love. Hope.
We are in our third month of herbal lyme treatment and the ups and downs keep coming. A few weeks ago it started up again - those horrible symptoms. Armed with some new tools of attack I think we have been able to keep things at bay. Maybe.
She is up to multiple supplements in the morning and that in and of itself is taking it's toll. I hate to take my vitamins so I can imagine what it feels like to a seven-year-old little girl to take so many. I was hard on her this morning. I just wanted her to take her pills and it had been 20 minutes of fiddling with them and complaining. I tried empathy. It's time to brush teeth and hair. I tried encouragement. We only have 10 more minutes until the bus gets here. I tried the threat of consequence. It's TIME! I finally took them away and told her to go out to the bus. That is the greatest threat of all because she fears what will happen if she doesn't take them. Running around me she grabbed them from the counter and began. She fears the crushing sensory symptoms that may escalate. She is terrified of the scary thoughts that could come crashing in to her brain without invite, no way to push them out. She hates the insomnia that keeps her awake for hours and hours because it usually gets the better of her and then of me and the crying and yelling ensues.
How did this happen? Why? I don't often go there. I'm always looking forward, focused on what to do next. We're trying to get b vitamins balanced, adding minerals, and lots of anti-inflammatory and liver-detox support. I think it's helping but it's a lot to take - literally a lot of pills to take. After a morning like today's, I reassess to see if I can safely remove a couple of pills. Just to ease the burden on this little girl.
Then again, we are lucky right? It could be worse. At least she is "healthy" and not fighting something worse. So maybe she needs to suck it up and take eleven. Big deal, right? At least we can fight and there is hope. Some kids have so little hope. Some kids are fighting something that is ultimately going to win. She will win this battle so the focus needs to be on sustaining her as we go. At least she is home and comfortable and able to go to school and enjoy good friendships. She is learning and playing as she should be. It's just this other stuff she's got to handle. And there it is. Perspective. Never takes me too long.
So how can I better sustain her and hold her up? How can I strengthen her and her resolve? I tell her she is strong and brave and conquering it all. I think she believes me. Most of the time. When she's not just too damn tired of it all.
Me too. I'll do better.
Strength. Love. Hope.
Now We Know
Friday, December 9, 2016
How the hell did she get Lyme disease?! Lyme and at least three other co-infections that typically come with the territory including bartonella, babesia, and that one that starts with "echl". After eleven months of not knowing what was triggering her flares perhaps we have found something. Lyme and PANS are not distant cousins - they tend to run together like closest siblings or the best of friends. These are the only infection we've ever found. Could this be the answer?
My feelings are of course all mixed up. Glad to know there is something to treat but worried because this thing is not easy to treat. The more I learn the more I respect and fear these bugs, parasites, stealthy invaders. It's pure science fiction, people. They are shape-shifters these lymie things, evading detection by changing form. They are body snatchers, throwing their dna in to a cell to hide and wait, sometimes years, until the coast is clear and the environment friendly they come out to wreak havoc again. They are opportunists, taking advantage of damaged immune systems, weakened health, finding places to set up camp, signaling to each other , coordinating, and building communication and supply pathways. I kid you not. Sci-fi-gone-real.
I feel validated that we have finally found something. We've been shooting in the dark for 11 months and now have something at which to aim. Answers. Now we know. We started an herbal protocol three days ago because the antibiotics required to fight these infections would hurt her more. This treatment plan is slow and not-so-steady as it could take 6-9 months to work and the ups and downs will persist as we travel. We will hold steady and hope the relief she's received these last few weeks continues and expands. Driving with blinders on we don't know what is just around the corner so we're enjoying the view from here.
Hope. Strength. Love.
How the hell did she get Lyme disease?! Lyme and at least three other co-infections that typically come with the territory including bartonella, babesia, and that one that starts with "echl". After eleven months of not knowing what was triggering her flares perhaps we have found something. Lyme and PANS are not distant cousins - they tend to run together like closest siblings or the best of friends. These are the only infection we've ever found. Could this be the answer?
My feelings are of course all mixed up. Glad to know there is something to treat but worried because this thing is not easy to treat. The more I learn the more I respect and fear these bugs, parasites, stealthy invaders. It's pure science fiction, people. They are shape-shifters these lymie things, evading detection by changing form. They are body snatchers, throwing their dna in to a cell to hide and wait, sometimes years, until the coast is clear and the environment friendly they come out to wreak havoc again. They are opportunists, taking advantage of damaged immune systems, weakened health, finding places to set up camp, signaling to each other , coordinating, and building communication and supply pathways. I kid you not. Sci-fi-gone-real.
I feel validated that we have finally found something. We've been shooting in the dark for 11 months and now have something at which to aim. Answers. Now we know. We started an herbal protocol three days ago because the antibiotics required to fight these infections would hurt her more. This treatment plan is slow and not-so-steady as it could take 6-9 months to work and the ups and downs will persist as we travel. We will hold steady and hope the relief she's received these last few weeks continues and expands. Driving with blinders on we don't know what is just around the corner so we're enjoying the view from here.
Hope. Strength. Love.
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