Yo soy La Lay

adventures in family, faith, and Down syndrome

Dear Ashley

Dear Ashlery,

Girlfriend, I miss ya.  It’s been almost ten years since we spent our first year teaching together up in that tiny little town.  They did a great job when they hired us to work together; we made such a great duo.  I couldn’t have done that first year without my constant companion at Friday Night Football, my dinner date to Chili’s like 5 nights a week, my early morning breakfast buddy, my Spain travel companion… should I keep going??

I think what I love the most about our friendship is that even as different as our lives may be, and for as long as we sometimes go without seeing each other, when we get to spend time together, it always feels like we see each other every day, like there has been no distance or time in the way.

The other day, I had written a comment on Facebook about how I was so glad to have you in my daughters’ lives. I really mean that.  I love that they can see someone so kind and loving, successful, confident, gorgeous, intelligent, who is an awesome friend and family member and a leader in her career.  I feel that it is so important that they be surrounded by strong women, and you are a shining example of that for them.

I often feel like a terrible friend these days.  I know that I have too many balls in the air right now and that my balance is a little off.  Another friend of mine always preaches that people find time for what is important to them and I don’t know, that seems a little unfair to me.  Maybe that is part of my struggle for balance.  In any case, I want you to know that I miss your face!  Thanks so much for always being there to help lift my spirits, hear my whining, and to drag me out for margaritas when I need it the most.

Cheers to pink, sparkly, shopaholic, wine-and-chocolate-loving girl bosses!  Now come over already, will ya??

Love,

Dub

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Lesson #23: There is an abundance of support

The first few hours days (?) after a diagnosis can be, quite frankly, isolating.  Few really quite know exactly how to respond.  Somehow, your family has become different and you really aren’t sure how.  You feel like the same person and entirely different at the exact same time.

Soon, support comes trickling in.  Or flooding in, as the case may be.  It flooded in our world.  We were blessed with that.

Since Tessa has joined us, I have joined UPS for DownS, NADS, a Down Syndrome Diagnosis Network‘s Rockin’ Moms Facebook group, a local mom group called the MODSSQUAD, another local Facebook group called Gene Rockin’ Moms and a Baby Center group.  There are a mountain of blogs that I read (check out my reading list on the sidebar).  I follow Gigi’s Playhouse on Facebook and get their mail, also.  We haven’t gone yet.  Quite frankly, with all of the support, we’re still not sure where we fit in.

When I first started out on this journey, I felt like an impostor.  I vividly remembered life Before.  Ten months ago, I didn’t even know that advocacy like this existed.  Special needs were not on my radar.  I have no idea what I spent hours online doing.  And I felt like, at any moment, someone who was further along in the journey, someone who doesn’t remember Before, might look at me, the fresh-faced newbie, and think, “Well, where the heck has she been? And does she think she can just come in here and start caring now?  Where was she before?”

I really, really worried about that.  It hasn’t happened.  And it won’t.

Our NICU social worker told me that I don’t have to like all the moms of kids with Down syndrome that I encounter.  Thinking back on that has always made me laugh.  She told me not to feel like I have to befriend everyone with a child with Ds and reminded me that just because we have this diagnosis, doesn’t make our family exactly like any other.  To me, sharing the common experience has helped me forge a bond with some other mommas that I hadn’t met before (I started to list all their names and it got too long, so I stopped).  They are still young friendships.  We are less than a year in, after all.  But my mostly-extroverted self is loving this new opportunity to spread my social circle and connect with moms who can relate.  And I don’t feel much like an impostor at this point.  🙂

Not all support comes from strangers, though.  Tomorrow, a post dedicated to the ones who have been here since Before and are still here.

A completely unrelated Throwback Thursday picture, just because….  

10 month old Ellie

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Team Tessa Rocks Chicago

The last week and a half was so busy and went so fast that I’m trying to figure out if it actually really happened or not.  I’m looking forward to sharing some pictures from our great vacation in Saugatuck, Michigan.  But first, we had the most amazing day on Sunday.  Team Tessa absolutely rocked the Chicago Rock n’ Roll Half Marathon and 5k!

We raised over $5,000 for our favorite parent support group, UPS for DownS and were the top fundraising team for our group.  When totaled, all of the runners who came out to race raised over $34,000!!!  Amazing!!

Team Tessa is ready to race!!

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While the day started a LOT earlier than any of us would have liked (especially me, as we were at a wedding the night before…), it was so cool to walk through the city early in the morning, watching the sun rise up over the buildings as 30,000 runners made their way to the starting line.  Ellie was very excited to see the skyscrapers and to wear her Team Tessa t-shirt.

Ellie can’t believe that she has her two favorite people, her grandmas, (almost) all to herself!

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As we waited for the race to start, Tessa managed to have her own little monumental moment… she held her bottle on her own for two full ounces!!  I was able to send this picture to John right before he started running:

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But apparently, that milestone really took it out of our little rock star, because she slept for most of the rest of the race…

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Ellie had a great day too, despite the fact that she got up at 5:00 in the morning.  She managed to be three-year-old-meltdown-free until we didn’t let her take off her shoes in Subway after the race.  She loved watching the race with her Papa.

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Somewhere between miles 4 and 5, we saw some of the racers.  Clearly, they weren’t too worried about their time, because they took a second to say hello!

Waiting for the finish, the Team Tessa supporters who were able to come to the race on Sunday gathered for a cute picture.

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While I hoped to catch all of our runners out on the course, three of them were just too fast for me.  But  here’s a picture of John and Uncle Mike crossing the finish line:

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It was such an awesome, inspiring day.  We met some great people, enjoyed the great city of Chicago, were blown away by the supporters of our group… and were amazed at the outpouring of love and support from our family and friends.  We can’t wait for next year’s event!!

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