Freedoms Rediscovered

Wednesday, September 20, 2017 

Tonight I went to my first PTO meeting and I stood in that room feeling lucky, not to be there, but to be ABLE to be there. I was there without worry or doubt, knowing my daughter is free from the symptoms of a horrid illness that has plagued her for so many years. Free from the need to have me and only me there at the time of day when symptoms could be at their worst.

This has been a long time coming. I wasn't sure it would ever happen.

When your child is sick but doesn't look it. When the symptoms require that you be with them, and leaving would amount to abandonment in the darkest hours of their day. Years of heartbreak and hope. Watching them struggle with what comes easy to most of their peers. Five years of being the only one who could be there, not because I wouldn't let my husband help but because he couldn't. As much as he wanted to and as much as he tried, she couldn't be without me. Some of the worst parts were that friends and family assumed I was just being over protective, while others went so far as to say we were coddling her and making things worse. The worst part was  knowing that when I had to leave, it could be torture for her. Being your child's Only Person is not only incredibly hard, it is sad because you know they are imprisoned. Your child is not free. You accept your own confinement but to see your child cornered by her own mind and body is heartbreaking.

Tonight I was not needed. I was away in the hours that lead up to bedtime and I did not nervously hold my phone, waiting for the text to call me home. I knew she was okay. It was a great evening and I came home to two happy children and a father who can finally parent his first born again. Finally. We are whole again.

Strength. Hope. Love. 

A New Chapter

Sunday, September 3rd, 2017 

If you don't quite understand how medical illnesses and underlying nutritional deficiencies cause anxiety in a child, I could explain.  If you want to understand how OCD, terrifying fears, insomnia, clothing sensory, and emotional outbursts can be caused by a stealthy underlying infection, just ask.  My daughter has busted through two more milestones in the last 24 hours that she's been struggling with for 4 years.  She has broken through.

FOUR YEARS of illness. Four years of pain. Four years of asking, why. Four years of pediatricians who couldn't help. Four years of people giving me well-intended but infuriating parenting advice.  Four years of research, learning, fighting, tests, $$$, heart-breaking setback after heartbreaking setback.  Four years, each one building upon the other, to give us the knowledge we needed to figure this out. Four years of kinship with other warrior moms, trying to heal their kids of all kinds of illness; pandas, pans, Lyme, ADHD, odd, asd, Tourette's, anorexia, and of course, spd.  Moms who refuse to settle for, "this is just the way it is".  

And just as I knew four years ago, deep in my bones and in my soul, that something wasn't right, I know now that something is.  This is not the fragile, teetering, temporary improvement we've seen so many times before. I can feel it in my bones and my soul is whispering to me....we're on to something and she is healing. 💕

To every friend, old and new, who has been there with me, thank you.  Thank you for listening to me drone on about the dangers of chemicals, toxins, and vaccines for our kids.  My winding explanations of methylation and detoxification.  Cell mimicry, auto-antibodies, glutamate, and inflammation.   To the moms who have been on this path much longer than I, who shared their knowledge and set me right, (you know who you are), a special thank you from the bottom of my heart. I know there will be issues to contend with, and future illnesses can set us back, so this is not the end of her story; but is the beginning of another chapter.

Hope. Strength. Love.