Dear Jon

I recently wrote an article that The Mighty published about being angry. I wrote real feelings on how occasionally parents of typical children upset me. I said that I was angry that other parents don’t have the same worries as me. I said that I know it’s irrational to be angry, but at that moment I was. I was upset that the heartache I endure is not one that most other parents have to live with. I’m jealous that what worries me is not what most moms worry about. I worry about a cold ending up in a hospital stay, I worry about organs failing, I worry about hitting milestones that were on the 6 month well-baby check list.

I wrote that I was angry our life was different. I was upset that the life we were given was not “typical.” Occasionally I’m even upset that I’m different. My priorities are not new handbags and working out, my priority is keeping my son healthy and thriving. I read through comments and was very comforted in knowing that SO many other parents of special needs children thought the very same way. They commented saying “thank you for saying it out loud” and “you are in my head!” There were AMENS and gratitude for being real with my emotions and life.

But there was the one comment that I kept coming back to…

“Why should we worry what the mother of a handicapped person thinks? Sorry your kid isnt normal, but ultimately thats not our problem, its yours. Youre the one who had some messed up genetics in your dna that caused it, be mad at yourself.”

Let me take this sentence by sentence.

First of all Jon, you read the article published by a media company who finds “strength, joy and beauty in disability and disease.” You must “worry” what a mother of a handicapped person thinks, otherwise why did you waste your time reading my words? You even took the time to comment.

Normal. He’s not normal, he’s not typical. He’s uncommon. He is anything but normal and you know what? He’s beautiful and rare. He is also most definitely not a  “problem.” He is my son who is the most courageous and determined child you will ever confront. He is joyful. He has touched countless people and has the most memorable smile that will leave an imprint on your heart. So, problem? Absolutely not.

Yes, messed up genetics is right. According to Global Genes, rare diseases affect 30 million people in the United States and of these 30 million 80% are caused by messed up genetics. That’s a lot of people to be angry. That’s a whole ton of people to be mad at themselves. Anger is extremely unhealthy and it can wreak havoc on someone’s body and in their personal life. I don’t truly believe you want that for me or any other person. That’s plain mean. I can honestly say that I have never once been angry at myself. My genetics are out of my control, I am not wasting my time or energy being angry at something I had no control over.

My son is not normal and he is not a problem. Our life is challenging and difficult at times, but without struggle how will one ever grow? I am entitled to bad days and so are you. I just said it out loud. Without hardship how will one ever learn to appreciate true beauty and blessing? I have learned more from my son in the last two years than my first 30. He is teaching people all around us the meaning of love, perseverance, and strength.

Now Jon, how could I ever be angry at myself for making such an extraordinary human being?

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