Strength & Forgiveness
His diagnosis shattered me. I was so strong when I didn’t understand the diagnosis and I didn’t realize the severity. I thought we would just give him some meds and fix it all. I imagined the most significant new complications in our lives would be signing extra paperwork at schools to dose medications properly and remembering to pack them in his things for summer camp. I imagined him explaining his condition to the boys at school and them shrugging it off and playing with him anyway. Being his friend. Inviting him over. Admiring him. Then I read the articles. And watched the videos. And joined the support groups. It was then, word by word, video by video, episode by episode that I fell apart. It was then that the doctors’ faces made sense. The bewilderment in their voices matched the helplessness in our actions. He would never have that life and now neither would we.
I used to watch him sleep after nursing him. I’d stare at his perfect eyelids, trying to ignore the minefield that lie underneath, and I’d pray. I’d kiss him on the forehead with my eyes closed for minutes at a time. Somewhere in my grief and exhaustion I imagined myself in a Disney movie; my overwhelming love and the beauty of the moment would heal him. I could wish and pray and will the broken pieces of him back together and we’d all live happily after. This nightmare would be over and our family would become what it was meant to be all along. I’d lay him down gently, waiting for the blankets around him to swaddle him in a magical, healing glow. When they didn’t I’d stare into the darkness of his room and remember the joy of learning we were expecting again. I’d try to hold onto the warmth that oblivion since gone had provided and quietly creep out of his room. As I’d close the door I’d try to see him in his crib one more time. When my eyes couldn’t adjust to the darkness I’d close them and pray that God would take him while we slept.
Thankfully, God didn’t take Connor. Instead He took away some of our grief and gave us friends experiencing the same hurt to provide understanding. He took away the overwhelming weight each morning held and instead gave us hope of progress and pride in development. Most importantly God took away some of my doubt about my ability to raise a special needs child and gave me forgiveness for the lack of faith I had in Him, Connor, and myself.
I still trip over the words “special needs parent.” I don’t know how to be a part of this community. I don’t know how to interact with other disabled children or their parents. Receiving a diagnosis doesn’t come with instructions on the new social cues I should be taking. All I know is there are more moms and parents out there like me that suffer from the guilt of thoughts spurred by isolation. I want those parents to know we’re out there. There are more of us cheering wildly during PT for three seconds of successful wheelbarrows then later crying ourselves to sleep. More of us carrying on a normal conversation with friends while trying to keep the pool water out of an NG tube and pretending not to notice their discomfort. We’re here in this space; no judgment and no expectations. We are able to grieve, but more so we’re able to hope and grow stronger every day. We do this through our mutual support and shared experiences, however different they may truly be.
Today, give yourself a chance to recover your strength and forgive yourself for your weakness.