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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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.

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Mt. Everest

We had a follow up appointment with our son’s neurologist this morning. I asked to take a look at his repeat MRI so I could see the cerebellar atrophy myself. The atrophy is quite rapid and there is about 1/4 of his cerebellum left. He also has some cerebrum atrophy; there’ s a black halo near the top of his skull where there should be gray matter but there isn’t.

I surprised myself on the drive home. I didn’t cry. Those scans change nothing. They don’t change the course of action. They don’t change who he is. We walked into that appointment the same way we walked out. I spent the ride home thinking about what he DID do at his appointments.

He screamed throughout the entire check-in while everyone stared at us, but immediately stopped when I started Bubble Guppies on the iPad. Hmmm…I believe that’s typical 2 year old behavior. 😉

He gave his neurologist one of his most charming smiles…after he wailed throughout her entire examination; he was expressing his dislike to her touch.

He gave the fellow a high five. Twice.  🙂

He pushed her hand away when she tried to get his reflexes, showing her just how smart he is.

He tried to roll off the table when she was examining his range of motion, he was showing her how he could move.

To say she was proud of his progress is an understatement. She then said something that I thought of the entire ride home:

“He’s climbing Mount Everest.”

He’s doing it. He’s slowly climbing. Progress is slow. His progress isn’t always easy to see. He doesn’t have one area to strengthen; he needs to strengthen everything.

He is climbing the tallest mountain on earth. Every day he is trying to get to the peak. It’s hard but it’s not impossible. You don’t sprint up Mount Everest. You don’t climb it overnight. We are slowly climbing to the top. We aren’t going to reach it tomorrow, and we may not reach it in a month.

The scans may show something completely devastating, but every day, every ounce of progress is that much closer to the summit.