I know

I had the opportunity this week to talk with quite a few medical professionals at a genetics conference. One of the conversations was with a nurse from Minnesota Department of Health regarding alternate medicine and therapies.

She was saying how she is always hesitant to suggest alternate therapies and occasionally has a hard time supporting them. As I listened to her and another colleague discuss the issue I finally interjected and said that sometimes all we have as parents is hope. I continued to tell her that by her telling me that “studies show there’s no evidence to support that XYZ helps with ABC” only discourages me and deflates me even more. And let’s be honest, there are some days when I don’t want to lose any more air. I told her that I have a two and a half year old who still hasn’t hit milestones that most 6 month old children have mastered. I told her that I refuse to look back and say if only we did…I wish we had…why didn’t we?

As Christopher’s mother I know that I am going to look back and confidently say that I tried with every fiber of my being for him to reach his utmost potential. So, yes, we’ll continue to do anything and everything in our power to reach milestones that other parents are easily checking off their lists. His future is uncertain, but mine isn’t. I know I won’t give up.

We are taking him back to California next year for an intensive therapy session but this time for 4 weeks. There will be obstacles in getting there easily. We’ll need financial help again, but you know what? It doesn’t bother me. We’ll ask. We’ll pray. We’ll do whatever we can to ensure that we have zero regrets. He deserves it.

I think back to the conversation I had with Christopher’s neurologist at his last visit. I was telling her about intensive therapy and all we do at home to strengthen him physically and cognitively and I said I know, poor kid. Her response was one I will never forget. She looked up from writing her notes, stared me straight in the eyes, and said “NO. Lucky kid.”

I will carry that with me on our journey. I will fight for him to be “lucky.” I am going to look back in a year, five years, ten years and know that we exhausted every opportunity out there for him. I will look into his sweet face, as he’s walking towards me, and with tears I will say we did it. This I know.