Where You Going With That Suitcase?

In one of the few moments during the day I have to myself, I am taking the opportunity to sit and write. Gabe is watching Thomas on PBS, his idea of Heaven, and Anna's napping.

We took the kids out on Sunday because it was a beautiful 40-degree sunny day, and when you've been living under 21-inches of snow for a week and a half, you take what you can get! We walked to Mass, went to brunch, and ran a few errands around the neighborhood.

Then, Sunday night, Anna and I both had tumultuous sleeps. She was up coughing, and unfortunately we've been through this a few times before to know she was on her way to an ear infection and another respiratory virus. I spent much of the night rocking her in her chair, doing chest compressions and some other tricks her therapists have shown me to help break up the rattles in her chest.

In the few hours I got to spend in my own bed, I had one bad dream after another. It was the same one, on repeat. It was was a re-living of last Tuesday. It showed me behind the wheel driving on the Grand Central Parkway back home from Target, talking to Ellen our genetic counselor on my cell phone, and her delivering the news. And when that dream ended, it began again. And repeated. Over and over. All night long. I woke up with "positive for Rett Syndrome" on my lips. In my head. On my heart.

Manny told me I couldn't let this consume me. I told him I spend my days throwing it out of my mind that when I sleep it comes back with a vengeance. I know this won't last forever. I know that sooner or later we will reach a new normal and it will be a part of our lives. But not yet.

Mom gave me a wonderful analogy that someone had once shared with her when they found out their child was diagnosed with a debilitating disease. "Having this beautiful child was like we had our suitcases packed for this grand vacation to Hawaii," she said. "And while we were ready for this amazing trip, waiting in the airport to go, the diagnosis came and it was like our flight was redirected to Alaska. And we were lost."

She said she had to learn to "repack" her suitcase. Had she gone to Alaska with everything prepared for Hawaii, it would have been disastrous. So she re-packed her suitcase with the right clothes, the right boots, the right coats, the right utensils that she needed. And by the end, she said she "loved and appreciated the beauty that we found in Alaska than we ever would have had we made it to Hawaii."

I reflect on that everyday. Sometimes more than once in an hour. Sometimes as much as 10! I think of this process as unpacking my suitcase. And repacking. And knowing that no matter what state Manny, Gabriel, Anna and I land in, we have the right clothes. The right boots. The right coats. And most importantly of all, we have each other, and not too far away from the cockpit are our parents, grandparents, aunts, uncles, cousins, and friends.

Soon, I hope to truly believe that the Heavenly Father is steering our plane, but right now, I believe the diagnosis is. I believe Rett Syndrome is behind the wheel. But I know within the coming days and weeks, I'm going to kick it out of its seat.