Who Could Ask for Anything More?

I can't let today go by (even though it's really already tomorrow, but since I haven't gone to bed yet, I'm thinking it's still today...follow?) without saying something.

Today was the big day. Today we saw the neurologist. The last time we made this visit was hard. I’ve tried not to dwell on that visit, but it's stayed with me. It's been hiding out in the back of my mind waiting to jump out this month.

Between then and now it's showed up in conversations with Max's therapist, his service coordinator, our insurance company and with Nelson, of course. In fact, when I talked to Nelson that night about the appointment, I did it through tears of fear and sadness. Suddenly the thing we had talked ourselves into believing he would outgrow, had become this giant word called disease.

This word spiraled into a whole new universe of discussions of muscle biopsies, diagnoses and disability coverage. It was not the country I planned on visiting. It was not the planet I wanted to be on.

But that was then and every decision we needed to make we deferred until today. Because of the impact this visit and its decisions would have on our little guy, I had arranged to have my mother (and personal nurse) come with me just so I could have a second pair of ears listening and also so I could have someone to tell me everything will be okay as I scheduled the surgery I hoped he wouldn’t have to have.

With all of that in place, I put these thoughts on the backburner so I could get on with my life. I’ll think about that in December, I told myself. And today, quite suddenly, it was here.

I was really hopeful walking into the office this time. While my mom couldn’t make it, Nelson happened to have the day off and agreed to meet me there. Having him by my side always makes me feel like everything will be alright.

Also, Max has made tremendous progress in the past three months. His hobble has turned into what is pretty darn close to a run. He is attacking the stares now with no help at all. He can actually jump, even when he’s not on the trampoline. On the page, these accomplishments suddenly don’t feel very big; but, let me assure you that where Maximilian is concerned, they are nothing short of the kind of miracles that bring tears to your eyes.

The pediatric neurology department at the Children’s Medical Center in town is a mixed bag of emotions for me and Max. It still feels like a big deal to be taking my child to see a neurologist. On the other hand, seeing the other patients come in and out of the office always makes me grateful for the tiny, tiny cross I carry. Things could be so much worse. And Max, well, his normally happy, energetic self totally turns off the minute the doctor enters the room. He looks suspiciously at the doctor and is always reluctant to do anything for him. It’s almost as if Max understands the seriousness of this place as well.

Today the wait for the doctor seemed abnormally long. My prayer was that we have total clarity about what to do. I prayed that either way, the decision would be taken out of my hands. So when the doctor finally came in, I was ready to get it over with.

We talked and then he watched Max for awhile. He poked around on his muscles and then turned to face us. “Well your observations are right,” he told me. “Max definitely has low muscle tone, that hasn’t changed.” However, what followed blew me away. “I know we talked about a biopsy but there’s absolutely no need for that. We would go forward with that if we thought there was some kind of disease present but there doesn’t seem to be anything like that going on here.”

He went on to assure us that Max’s weaknesses were in no way connected to the ALS that runs in my mom’s family. He also noted, and I quote, “There’s every chance he might eventually catch up with the kids his age.” He was encouraged by the progress Max has made and in the end let us know that Max was okay. He can’t explain the weakness and low muscle tone but he was willing to watch and wait for 4 months this time around.

I think I made him repeat his statements two or three times before I let it rest. “Okay is great news,” I told him finally. “I’ll take that!” The doctor and Nelson laughed at my giddiness and Nelson let him know, “She’s probably going to cry all the way home.”

But I didn’t cry. In fact, I couldn’t wipe the smile off my face. I feel like I just got Christmas 11 days early this year! I couldn’t get over how different I felt leaving that place this time. I joked with the nurse and the receptionist. We wished everyone a very Merry Christmas as we made our appointment for April.

How can this be? How can something turn around just like that? Can it be true? There are still so many unknowns. Maybe he’ll catch up and maybe he won’t. Maybe he’ll grow out of this and maybe he won’t. Only God knows.

What I do know and will hold onto is that today I got my Christmas miracle, my early present. I know God did this and I thanked Him for it all the way home. I’m sure I did this because when I finally got quiet, I heard Max from the backseat saying, “Yay! I don’t have to have surgery!”

Really, I couldn’t ask for anything more.