Years later, I want to encourage others with X-linked conditions to communicate better – more – about their reproductive options. I want to encourage families to have the difficult conversations. I want to save someone from my pain. So, I agreed to write about my journey. I typed and typed, but no words would form — only silence and suffocating guilt. I became angry — kicking and screaming at the process. So, I visited my trusted friend: the beast of the chapter I use to blame my struggles. Then suddenly, I saw it lying there.
I grabbed the chapter of our diagnoses. The words “If only” were etched on its surface. I began playing a dangerous game. “If only I had known for sure I had this condition,” “If only my parents would have talked to me about this,” “If only I hadn’t had children.” The last one was my call to open the book — I deserved the pain it would bring. I started at the beginning, reading every word. On the last page I had written, “This is your fault” – circled and underlined. I shut the chapter angrily, swearing I’d never open it again; I would never talk about this again. “If only,” I thought. “If only I hadn’t agreed to this.”
If I could give anyone that has passed a genetic condition to their child advice, I would encourage them simply to talk about it. Talk about your experience, your disappointment, anger, fear, and blame. Allow yourself to feel the pain. Then, allow yourself to understand your pain. Because understanding begets compassion; and with compassion, we find healing. Through healing, we find our purpose.
For far too long, I buried the pain of my children’s diagnoses. I refused to talk about the day I received the infamous phone call while calling myself empowered. I blamed my hurt on my lack of knowledge of reproductive options. Then, I talked. I wrote. I relived the pain. My hope is that sharing my experience will help others know they are not alone, and to encourage those who think they cannot overcome their pain to do so anyway. Perhaps by talking about your experience, you will find the reason your pain is so great, and your healing is so needed. For me, I’ve found that both are because of my purpose – and that is to love my children well.
Some days I wonder what one thing I would tell my younger self if given the chance. The eyebrow thing is a given, but I’d also tell myself to read that chapter title again. “If only,” it now reads, “you knew how much they love you.”