Moms understand best

Last night at the Yawkey Family Inn was eye opening. I ventured out to Trader Joes to buy Izabelle all her gluten and dairy free items then came back to the inn to cook her dinner. A nice volunteer family made lasagna, garlic bread, cookies and salad. We had hamburgers, fries and salad. As we were eating families started to spill into the kitchen. We first met a little girl named Kaitlin. Kaitlin has Rett's syndrome https://www.rettsyndrome.org.   She has all the classic features: repetitive motioning of her hands and cannot speak. She was the most beautiful girl as was her mother. Later, another mom and her daughter Sydney came in to the kitchen. Sydney also has Rett's. Izabelle was overly curious about Sydney because well...Sydney kept spitting uncontrollably. Mommy teaching moment fail! I kept trying to refocus Izabelle on eating and probably called more attention to ourselves then needed. My line is: 'God makes us all different, special and unique. God gave you seizures and that's how God made them.' Izabelle wanted to know why Sydney spat and if she could talk and why she was in a wheelchair. After cleaning up dinner, we approached Sydney and her mother who were eating in the common room instead of with the rest of the families. I couldn't help but empathize and wonder how isolated that Mommy felt. We introduced ourselves and we were met with warmth and kindness. Sydney's mother wanted to hear all about Izabelle's seizures and our past and current appointments. It turns out that both Sydney and Kaitlin both have seizures but Keppra, a medication that failed Izabelle keeps their seizure activity at bay. I'm just overwhelmed by how warm this group of families are. It's so good to be here. This morning Izabelle woke at 5am with a string of three seizures. I'm buying a video monitor for her room when I get home so I can be more aware of her nighttime seizures. This is our life ... And no offence but it could be much worse. Counting our blessings!!

This was how busy it was at Trader Joes!!