Hope

Where is it? Hope eludes me as cleverly as the cure does.

Why must it be so horrendous, this trying-out of medicines, this waiting-for-something-to-improve?

Why my boy?

My [healthy] daughter has such zest for life. She always had so much confidence, curiousity, character. Now she crumbles, although I do believe she's gained new strengths. She is the younger one who acts as the older one.

He raged today, my sonny. I held him. Tight, so his arms wouldn't hit me or throw things across the room. I told him how much I love him, that I'm sorry he's hurting, that we'll keep him safe. I wanted to sing to him but I couldn't find a tune my voice could handle. Summertime just doesn't work anymore. "But until that morning...there's a'nothing can harm you...."

B.S. 

Anything sets him off now. Any pressure from school. His sister crying. A small argument.

I fear people walking by our house will hear his screams, his yells of, "I'll kill somebody!" and call the police. I fear my baby being taken to a hospital and given psychiatric medication that can make him worse. I fear doctors scorning me because they don't believe in chronic Lyme. I fear my son being another Elizabeth Wray. 

I fear for Elizabeth Wray. This WAITING with no information is agonizing. She is everyone's child now. She is my son, your daughter, his child.

My children were and are my dreams.

What's wrong with him? Is it a herx? A PANS flare? Why can't doctors figure out how to help him? Why are we running out of money seeking cures for him? Why can't I have more time to visit doctors and hunt down alternative cures? Would it make a difference? Am I perhaps lucky that I have a good job that I enjoy, that I can for a few minutes forget my own pain and enjoy teaching someone's else's children?

Doctor's offices are preparing letters for my son's school. His school has never before had to deal with a child with neuroborreliosis. They don't know how to accommodate him and need doctor letters before making changes. So, until then, must we keep him home? He's too sick to even advocate for himself when he goes to school. We are lucky that he can still enjoy friends, football games, little bits of life. In small doses. The things for which I am now grateful.

If we can't keep him in school, we'll have to homebound and that presents a whole different set of problems. 

Hospitals. Money. School. Rages upon rages upon rages. My little girl crying. My little boy saying this has gone on for most of his life now. My husband sharing my stress. 

Breathe.

The fresh air was cleansing today, the air that swept through the car windows on the way home. My mind wanted to fly away on it. There's this one hill that I occasionally drive down. From the top, I can see a good span of Hudson River. I want to take off from that hill and glide over the river. Sans car. Just soar like one of the eagles that come down from the north mid-winter.

I thought that maybe I'd take out my guitar, lose myself to my music, the singing. I thought I would stop by the supermarket--anything to not go straight home--and buy food to make quiche. I googled the recipe while I was grocery shopping, filled my cart with eggs, cheese, vegetables.

But the raging took precedence.

I held him tight, the words, "I love you" my mantra. When it was over, I felt his body relax into mine, and he said, "I just woke up. Was I raging? I feel like I was but I don't remember anything."

I will remember. For all of us. I will remember.