We have certainly been traveling this road for what seems like years, although it’s only been 18 months. Remember how you referenced your new child’s age by months? Wasn’t Bridget just 18 months old running away from me, laughing and climbing the ladder for the slide? Wasn’t it just yesterday she used to open up the refrigerator, take out an apple and eat it to the core, only to get another one 2 hours later? Didn’t she just give me that hug that hurt because she squeezed me so hard, but felt good at the same time? It hardly seems possible that time goes by quickly day to day, but altogether slowly as we watch our Bridget change. Many people ask me when I am going to update the website. Sometimes they just drop hints that say they’ve been looking; wanting to ask how Bridget is doing. Well, we live with her everyday and love her every minute. That’s what counts most right now.

Bridget’s current condition is simply OK. She has braces now for her ankles and feet. She stands sturdy in them, but sometimes can be blown over from the wind of a wagging tail. Then she’s just mad about falling and not being able to get up. Bridget walks with assistance almost all the time now. She can use the furniture for support and there’s always us. She is happiest in the car seat or stroller, but it has to be moving! Bridget continues to have a good appetite, but can no longer feed herself successfully. She is losing muscle coordination in her fingers and hands and is often very shaky. So, our dogs reap the benefits at meal times, if we’re not supervising. Bridget’s vision was tested with a truly horrific test at Children’s Memorial a couple weeks ago and yes, the disease is affecting her retinas. She is losing clarity, although we cannot judge how much and most likely her peripheral vision. Soon, Bridget will be back at school (Aug. 31) with a lovely new teacher who came for a visit to our home today. She plays the guitar which will light up Bridget’s world, as music is still her sweet spot. B will also have her own aid to assist with movement, playing and overall care at school. We’re so grateful we have people like this in Bridget’s life.

Forging ahead on this incredulous road, Harrison and I began school today. It’s refreshing to see all those wonderful, little, smiling faces. I remember today why I like my job so much. There’s so much potential and wonderment. How can that not inspire me? Harrison, too, like the first graders in my hallway, is enthusiastic about school and learning. He can read well, but much rather prefers me reading to him. Didn’t we all like someone reading to us, taking us to another place, somewhere far from here? I just wish I could whisk my little girl away to New York or Portland or anywhere that has a cure for this disease. Harrison asked me in utmost honesty what would I do if the doctors found a cure for Batten Disease? I told him I would yell “Halleluiah!!” Then he proceeded to ask me, “Why did God give Bridgey Batten Disease?” I sat quietly thinking about something sensible without swearing about it. I told him, “Because he knew she would be strong and fight it. And that we would always be here to love her and help her no matter what.” He understands so much in his full 7 years.

Time ticks by….. we’re still waiting to hear from the doctors at Cornell if their trial gets approved and funded by the government. Then there’s the trial in Portland, where they await FDA approval of the next phase of their clinical trial. We live our lives, but hold our breath. We try not to think of the future and live for today (cliché I know, but true). We walk on this road and trip and fall like Bridget, never knowing what’s ahead. But, we hold on tight and hope that time is on our side.