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.