When I was in high school I got to spend a few weeks in Antigua, Guatemala. I was part of a group that was spending time at a hospital playing with babies. These children had cleft palette and needed surgery but were too small to be operated on. Our job was to play with them as it was explained to us that they would grow better in a stimulating environment. Fast forward over a decade or so and I am presented with another similar situation. Due to the complications from Claire having Rett Syndrome we are constantly fighting to put weight on her to avoid a feeding tube. For years she has been on the edge of healthy. At 6 and a half years old, she was a whooping 39 pounds, with her shoes on. With a solid five week break from school, I thought it the perfect opportunity to work on a few things, one of them being Claire’s weight. I figured that I would make calorie rich lunches and carve out a solid hour every day to make sure that she had enough time to eat as much as she possibly could. Funny, how whenever I try to plan and organize what I think is best, somehow a better plan emerges. I must say, the plan that haphazardly came together, is far better than what I had thought of. Claire and I have come to call it the Verve Diet. It started out of desperation, like most of our life these days. I was exhausted and down after a morning of seizures and just wanted to sit and pretend that life wasn’t that complicated for a few minutes. So after sitting in the car while Claire slept off the crazy head stuff we went to Verve for coffee and a treat. Claire opted for a good fellow which consists of puff pastry, some sort of custard and olallieberries. It worked well so we did it again the next morning and the morning after that. In fact, we have now done this every weekday morning since summer school got out, almost 4 weeks. I had noticed that Claire seemed a little heavier so we weighed her. Words cannot express my joy/relief/pride when she weighed in at almost 44 pounds, that is a 10% increase in 4 weeks, never in her life has she gained like this. Needless to say, wishing to build on this huge success I decided that we should continue our daily Verve Diet. So this morning, we dropped Chloe off and headed straight there. As we came up to the register Jillian greeted Claire and asked her if she would like a good fellow today. Claire beamed a smile and looked right at them in the case. Jillian then continued to talk to Claire about which one she would like and picked out the ‘best’ one for her. As I stood and watched this interaction, a giant light bulb went off in my head. It’s not just the calories in this delectable pastry that are helping Claire to be so healthy, but everything else around it. Each day not only does the staff greet Claire, there are several customers who say hello to Claire by name and ask her something random because that is what people do at coffee shops. There is normally some two year old little boy who breaks away from his parents and tries to push Claire and she loves it. It’s a special little place where we don’t have to explain anything, people just smile and not that, I’m sorry this is your life smile, they just smile. It starts her day out feeling accepted and appreciated. In the process of sitting and enjoying a good fellow every morning, not only has she gained a few pounds and improved her oral motor skills, Claire has become more comfortable being a part of the public. In rettland it often comes up at how scary it is to share our children with the world. We fear them being a bother (screaming is rather socially unacceptable) or people saying hurtful things even when they are well intended. This morning I was reminded not just of what Claire can add to a group, but just how valuable that sense of being in the normal world is to her. That is why the Verve Diet is now my favorite, better than a sensory diet, ketogenic diet or gfcf diet, it’s is a safe bridge between our crazy life and the rest of the crazy world and best of all, exactly what Claire seemed to be needing.
3 thoughts on “The Verve Diet”
That sounds like my kind of diet – yum! Sounds like Claire's doing well with weight-gain – I can't imagine that Amy will be anywhere near that weight when she's six – and she has a tube! Great that she's able to chew things like pastry and berries. Good going Claire! Cx
yum. olallieberries. i love when people talk WITH leah, not to her or about her. miss that sweet little claire.
Sounds like you had a good summer… you & Claire are a great inspiration my friend…..xxx