3.21

Today – 3.21 for three copies of the 21st chromosome – is World Down Syndrome Awareness Day. I love this day. Our family likes to wear mismatched socks to celebrate the differences that color our world. Friends and family send pictures of their crazy socks. My Facebook feed fills with celebrations and photos of kids and adults with that something extra. It is beautiful.

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Thanks to a packed schedule, only Lina and I got our sock photo.

Jon and I kicked off the day by attending Lina’s kindergarten transition meeting at the school she’ll be attending in August. This was the first time we met the new team that will be taking over her therapies and support services as she leaves early childhood preschool and begins her elementary experience at our school of zone. It felt like a pretty big deal, which is why you could have found me at our local FedEx at 9:30 last night, having a one-page flyer printed.

If you’ve followed along these past three years, you know that Lina’s preschool experience has been phenomenal. She has attended four half-days a week in an early childhood blended classroom of peer models and students with special education needs. There are four adults in the room of about 12 students: either the occupational or speech therapist (each two days a week), a special education teacher and two aides. The kids receive a tremendous amount of individualized attention and support.

We are very lucky to live in a district that believes in inclusive education for students Version 3with disabilities. In fact, the elementary schools in our county don’t have self-contained special education classrooms. Lina will be pulled out for brief periods for special ed instruction in reading and math and small group speech therapy but will do the vast majority of her learning in a general education classroom. She will receive support from a paraprofessional who stays with the class full-time.

All of this is awesome. It’s why we moved to this district. It’s also overwhelming. This is a whole new world for our girl. The change from four half-days to five full days is big enough. But now, Lina will also be one kid in a class of at least 20, needing to keep up with generalized instruction, transitions to other parts of the school for specials (like art, music and P.E.), navigating the lunch room, the bigger playground… It’s a lot, and this mama’s heart contracts every time I think about it.

But, this is what we’ve been working towards for the past three years. This is the process of parenting, that gradual letting go, of sending our kids out into an ever broadening world. Lina’s current preschool educational team has spent long hours updating her evaluations, preparing her IEP (which prescribes her special ed goals and supports), communicating with the new team and ensuring the right supports will be in place. Jon and I have spent three different meetings over the past two weeks going over those goals, providing feedback, suggesting changes, developing a behavioral plan, helping the new team get to know our girl and her strengths and challenges. Months before she begins kindergarten, an entire village is pouring effort into providing everything Lina needs to learn. I get weepy when I think about the dedication of these teachers and staff, who are paid a fraction of what they deserve. Together, we and these remarkable teams are laying the foundation for Lina’s future. The dreams we have for her of college, meaningful employment, independent living: they start here. IMG_3659

So, on this 3.21, I am grateful, and yes, a little heartsore. My baby is growing up, but I know that’s the job. Sending her into the world is never going to not be scary, but I am moved yet again by the size and heart of our village. From friends and family who put on their crazy socks (literally and metaphorically) to the teachers and therapists who work day after day to equip her for success, Lina has an army at her back. That may be the greatest gift of all in this journey.

Here comes the Spiderman

This is an embarrassingly overdue post, but I finally got photos edited from my oldest nephew’s birthday on September 3. Ben turned seven, and we had a Spiderman-themed family celebration. The kids always have a blast together. I grew up living a long distance from my cousins, so I am grateful that my brothers’ kids and mine are close in age and have the opportunity to spend so much time together. This is the stuff of great childhood memories.

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I love what an expressive gift opener Ben is:

You say lollipop, she says microphone…

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We may have worn these guys out…

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Silly string!

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Ben mastered his two-wheel bike on his birthday!

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We spent some time in downtown Chattanooga before heading home.

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Buddy Walk 2017

We couldn’t have asked for a nicer day for this year’s Buddy Walk. The morning fog cleared mid-day, the sun came out, and temperatures reached the unseasonably warm upper-70s. The event was held this year at Andrew Jackson’s Hermitage home just east of Nashville, and the setting was gorgeous as the fall leaves in Tennessee reach peak colors.

But the truth is that whatever the weather, the Buddy Walk is one of my favorite days of the year. I have written before about how much this day means to us and why. There is just no way to fully explain the experience of walking through a crowd of thousands of people who all share the joy of loving someone with Down syndrome and knowing that we are in this together. This is a group that can move mountains – and will.

Lina was thrilled this year to have a couple sweet classmates from school attend with their families. We are so grateful to all the friends and family who came out to be a part of the walk with us, and to every person who donated. The money raised through this event funds an entire year’s worth of programs for the Down Syndrome Association of Middle Tennessee, including critical education and advocacy work. Every donation, every person who comes out to walk is a part of making this community a better place for people with Down syndrome, and ultimately, for all of us. So thank you, thank you, Team Lina. You showed up, and it means the world.

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The whole crew – Thank you, Team Lina!

Happy birthday, Mimi!

The “kids” in Jon’s family – meaning his brothers, sister-in-law and the two of us – realized ahead of our Rosemary Beach trip that it was likely to be our best chance at having everyone all together close to his mom’s birthday, which comes at the end of October. It’s a big milestone year for her, and we didn’t want to let the opportunity pass. She is a remarkably hard-working lady, who pours attention and care on the people around her and rarely has the opportunity to be cared for herself. It took some doing, but we managed to pull off a surprise birthday dinner at our rented beach house on Thursday night. The Sharp boys and their wives are all good cooks, and the team effort resulted in a bang-up Italian feast. There was homemade chocolate cake, a group gift and a reading of 60 reasons we love our mom and Mimi. The best part was her astonished delight at the whole affair, and the sense that we had managed to communicate a little of the love and appreciation we feel for her.

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I spy someone who wasn’t paying attention to the prayer… 

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Sand, surf and sunsets

We’re a couple of days back from our annual fall Rosemary Beach trip with Jon’s side of the family, and miraculously, the laundry is done and the suitcases unpacked.

The drive to Rosemary is always long and even longer coming home, but the time there never fails to delight. This year, Lina seemed to remember the house and the beach and fell immediately into her favorite beach pastime of digging in the sand with gusto. We saw a lot of new confidence in Corin this year, as he charged into sizable surf without fear and logged some pretty impressive bodyboard runs. The waves robbed him of his prized goggles late on our last day, which a thorough search did not discover. Some other lucky kid is probably getting good use of them as I write, though I prefer to imagine them as entertainment for the dolphins.

These days, I find myself deeply valuing any opportunity to unplug, read a good book and spend time with people I love. Add sand, surf and sunsets, and no question, my soul benefited. Of course, we couldn’t ignore our concern for northern California as it burned or so many other places where people are suffering. There are endless, giant worries in the world, and it can begin to feel like I carry them all with me every day. I am learning to leave them with God and let Him show me what my responsibilities are. And for a brief few days, I am so grateful we were able to lay aside our stresses and just be together in a truly lovely place. The memories will last a lifetime.

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Ocean frisbee!

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