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.
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