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Hope, Strength and Blueberries

Hope, Strength and Blueberries

Hope is one of the most powerful, uplifting feelings. But it can also set you up for the possibility of crushing defeat.

My daughter, Addison, was born with birthmarks on her face—capillary malformations, which are red, and also known as port wine stains, and vascular malformations, which are blue. We spent lots of time in her first few weeks seeing doctors, doing tests, and getting second, third and fourth opinions. When she was 5 weeks old, we were devastated to learn that she had vascular malformations throughout her brain, and possible blood clots in these malformations.

Along with this came the possibility that her development may not progress much past the infantile stage. There are so few children born with her particular vascular set up (it’s best described as having varicose veins in her brain, plus a few small holes in her skull that allow veins to pass through to her face). We moved our family to Boston, to be close to the few doctors in the world who have seen other children with similar vascular issues, and held our breath.

This week, we are buoyed by hope, and are going to ride that high and assume we're not going to have to stop. Sometimes I am frustrated by what we do know about the physical differences in Addy's brain, and the possibility that it makes me see everything through tinted glasses. We are quick to jump to concern, to wonder if <em>something</em> is related to the vascular anomalies. But I'm getting better at not letting the “<em>I wonder’s</em>” creep into my mind. And this week, we celebrated a major milestone that's going to have me riding high for the foreseeable future. My baby is a toddler. My baby is walking. Staggering around the house while she giggles and claps; it's as if she knows it's been an agonizing wait for us. And it's exactly how everyone reassured us it would happen—once it clicks, it clicks, and all of a sudden she's walking everywhere. Monday, she was a crawler. Today, she walks.

We went blueberry picking this week. It a bit hotter than we expected, and it was hard work. We're going to go again once Chloe (our 11-year-old) is home. I know she'll be a good, dedicated picker, and she calls Addy her "little blueberry (nose)" because her nose is the exact same color as a blueberry due to the blood pooling in it. Chloe is wonderful at reminding me to embrace what makes Addy unique, instead of worrying about it. And one of our virtual friends, who also has a daughter with complex vascular malformations and lives in Maine, wrote to me about the "strength of the blueberry." In Maine, they are overrun with blueberries, and many up there spend a lot of time trying to get rid of them—mowing, burning, stamping—yet every year, they return. Her message had me reflecting on our own inner blueberries, and how special it is that I can see my own daughter's strength—literally, as plain as the nose on her face.

And so, this week, we are celebrating hope, strength and blueberries.

Categories: Special Needs

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