When I play games with Lauren while Carmen sleeps on the LovSac nearby, I stop and think, this isn’t the way it is supposed to be.
When I take Lauren to get a bagel at Panera on a Saturday morning, I stop and think, this isn’t the way it is supposed to be.
When I take Lauren to the park and I am her only friend, I stop and think, this definitely isn’t the way it is supposed to be.
When Lauren runs around with her cousins, I stop and think, this is sort of the way it is supposed to be…but there is supposed to be another little girl running around with them.
When I lay next to Carmen and cover up her ears because there is too much noise around her and it’s making her jump out of her skin, I stop and think, this isn’t the way it is supposed to be.
When we watch a brilliant fireworks display and make lots of family memories together…but Carmen is at home with the nurse, I stop and think, this isn’t the way it is supposed to be.
When July 5th rolls around each year, I vividly remember the day when Dr. Tifft told us that Carmen has Tay Sachs and think to myself, this really isn’t the way it is supposed to be.
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Carmen has brought us great joy and many tears. Most days I am extremely thankful for the joy she provides. But somedays I just think, this isn’t the way it is supposed to be.