I could make teddy bear pancakes

February 16, 2017

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

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

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

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

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

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

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

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

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

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

Got it.

Strength. Love. Hope.

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.

"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.