Buddy Walk

This event is one of our family's favorite annual celebrations. We gather with oodles of other Atlanta area families connected with Down syndrome in some way and just enjoy our community. We have always invited some of our 'typical' community to join us as well; two years in a row we had over 100 people representing Team Ruby! The last few years we have done less 'promoting', opting for a smaller gathering that day, in an effort to be able to hang out with the T21 family as well. There has still been much Team Ruby representation though, because you can't deter the love these people have for our girl!

That was so obvious in our team this year: over 1/3 of our Team Ruby participants were part of her teaching team at school. Amazing! These women spent the bulk of their Saturday with us, supporting Ruby because of two things: they are AWESOME and they love Ruby!

The weather was perfect, the setting was green and grassy and ideal for just hanging out, and everything except for our tent blowing away (twice) was perfect. Ruby thoroughly exhausted herself climbing up and down and through the bouncy houses and inflatable slides as much as possible leading up to the 'walk' at the halfway point.

She then obliged us and walked (or rode on shoulders) for the short processional. Her receiving her medal was a highlight for me!

And then she and her best 5th grade friend tackled all of the inflatables again (and again and again).

We shut the place down, finally packing up our tent after most of the official event clean up was complete. We just didn't want it to end! So much love for such a great reminder of the reach of Ruby.

Buddy Walk

This year's Buddy Walk was last weekend. We knew we would not have the same size team we've had in years past because we honestly didn't get the word out until later, and we weren't as good about our invitations. Also, the Atlanta walk was moved to a Saturday (instead of it's usual Sunday), and that interfered with fall sports for many families. In the end, we were actually glad we did not have as big of a crowd because it was so so very hot!

Ruby and the kids had a blast though, hitting all of the cool spots throughout the day. She especially loved that one of her favorite older friends joined our family for the day and proudly carried the Ruby 'head'.

For the first hour or so, our only 'guests' were Ruby's Pre-K teacher and her daughter. This was SUCH great news for Ruby as she loves Miss Jennifer so much. She seriously stuck by her side the entire time she was at the walk. Right around the time she left, the rest of our team arrived. We hung out and enjoyed the free Waffle House and Kona Ice, and then took our little walk around the parking lot.

Lehr and I got to meet a new family, who ended up joining us at our tent. I got to see so many of my friends from Gigi's and from my tribe, and we loved sharing it all with our typical friends that came out to support. We are so so grateful for all of you in our lives!

The Mansion of My Mind

I came across a blog this week that spoke so eloquently what weighs so heavy on my heart some days. The author spoke about her daughter, her daughter's chromosomal syndrome, and how it feels sometimes to live in that world. The line that jumped at me is one I could have written:

"it's hard living in the zone of parenting other people hope to avoid."

Hard indeed. For one, it's hard because I hoped to avoid it. Yikes.

I love my daughter. Seriously LOVE Ruby to pieces. Not a day goes by that I don't grab her face and have to stop myself just short of eating her up. And I want her. I actively want her in our family. But who she is isn't who I thought I would 'want' when Lehr and I decided to try for a third child.

So I get it. I get the parents that hope to avoid this particular zone of parenting.

I was absolutely one of those people. I was very close to discontinuing our attempts to have a third child when I found out I was pregnant. And that was almost exclusively because my age made me think that the odds were too 'in my favor' for a baby with Down syndrome. And why I was afraid of having such a baby was because I had no experience. I had no personal connections. I had no real facts. I had no idea what Down syndrome was except for the random and very lacking information I had read in passing or been taught in a biology class once upon a time.

That is why I am so passionate about World Down Syndrome Day and the Buddy Walk and getting Ruby's shirts out there and plastering her face and her videos and her story all over Facebook. It is my hope that those around our family - and their children and their friends - gain some insight into how not scary Down syndrome is. Is my hope that they are not like I was before I had Ruby.

Recently Lehr told a stranger about Ruby and her first question was "How old was your wife when she had her?" When he answered "36", that was followed by a head nod and a "yup..that's the age" type response. Ouch. It's not even that I'm offended by her perhaps insensitive or ignorant reply, it's more that it pains me to remember that I would have thought the same thing: pity and a 'that figures' response.

Back to the blogger's statement about living in this zone. She followed that with "It's hard having a child other people actively don't want." How I feel about that is something I get stuck on from time to time. It's not hard to love Ruby, but because of the lack of inclusion in so many areas of our lives, it is sometimes hard to parent her. Not physically parenting her in my home, with my friends, surrounded by family. But it can be hard to parent her when we're at a park. Or at the hospital. Or in a store. Or anyplace that she decides to act like she's two years old. We all know what two looks like: random tantrums, messy eating, social awkwardness, lack of 'listening ears', flat out disobedience. But I know when Ruby acts two in these ways, the spotlight is on her more, and for many people - people like pre-Ruby me - her behavior is chalked up to her extra chromosome: 'that figures'.

And it can be exhausting.

Exhausting to try and get her to blend. Exhausting to try and disprove any stereotypes I anticipate her audience is believing. Exhausting to feel I have to defend her 'special need' to everyone we encounter. Exhausting to feel like I'm always on guard, ready to stop her from overstepping her boundaries. Exhausting to parent her under scrutiny filled with pity.

Good thing she's cute.

In all seriousness, this isn't something that gets me down every day...it's just where my brain goes when it has a moment to wander every once in a while. Mostly it's one of those things that I don't even realize I've been thinking about until someone else voices it and then I feel a weight lift as I realize what I've unintentionally been carrying. So today I'm dropping the weight...hoping to not pick it up without noticing again.

Buddy Walk 2015

This was Team Ruby's second year participating in the Buddy Walk. We were so blessed again with a day of amazing (AMAZING!) fall weather. Sunny, but only about 60 degrees...couldn't ask for better!

Due to Ruby's hospitalization, she could not attend the event, but I did order a big 'Phat Head' to bring with us to the park. It seemed to help our friends find our tent, as well as represent the reason we were there.

We had a different crowd from last year; some friends were able to attend again, but many had sports rescheduled for this afternoon due to the crazy amounts of weekend rain we've had this fall. And yet our overall numbers barely dropped because so many awesome new friends joined Team Ruby! From friends at church, to friends from Gigi's, to friends from boot camp, to neighbors, to classmates of the older kids...even Ruby's favorite therapy dog (and parents!) came to walk in her name!

Our group picture was missing four or five families that attended earlier than the photo time; 94 is my best count of total Team Ruby attendees for the day. Crazy! (Aunt Megan stayed at the hospital with Ruby so that our whole family could be at the walk...so cool.)

Team Ruby raised over $5600! Our goal was $5000, and I thought that was a lofty one, but everyone was crazy generous with their donations. We know first-hand how much those donations benefit the Down syndrome community in Atlanta; so grateful for everyone!

Eli said several times, "I wish Ruby was here". So true. That girl would have had an absolute blast this year, but she'll be back next year with a spring in her step.

Update

As all-over-the-place as Ruby is these days in regards to her physical self and her personality, her response to treatment so far has been by the book. Ruby is still at the hospital as we wait for her numbers to drop. (The chemo kills off everything, so in the days following her treatment(s), she has blood taken every morning so we can watch the specific numbers and their trends. After each chemo treatment, we wait for the numbers to drop completely and then go back up. The chemo, the drop, and the recovery constitutes one round.)

Yesterday she had a blood transfusion because her hemoglobin dipped below 80. (The hemoglobin and platelet transfusions are expected during this part of each round.) No complications and she even had an extra kick of energy afterwards...my mom said she played around in her crib and talked to herself until after 9PM last night!.

As great as she is doing, Ruby's ANC is well below 500, which is the threshold for going out in public. (ANC, Absolute Neutrophil Count, is measured based on Ruby's white blood cell count, and the types of neutrophils/white blood cells present.) This means that she will unfortunately not be attending the Atlanta Buddy Walk tomorrow. We still have many friends joining us to celebrate our girl and her friends, and Ruby's aunt has graciously offered to stay at the hospital with Ruby so that our whole family can attend.

Lemonade Sale

Maddux and our friend, Virginia, had the idea last year to have a neighborhood lemonade sale to raise funds for Team Ruby for the Buddy Walk. We supported their efforts, but never expected the success they had. This year we planned a little more, prepared a little more, and had a great turnout.

For months, the kids and I (emphasis on "I") have been making loom bracelets for the sale, trying to focus on more red and white ones (the kids say those are official Team Ruby colors). We made some cookies, mixed up a bunch of lemonade, and the girls made new signs for down the street and at our stand. I put out the info on Facebook for the week leading up to the sale, in an effort to bring in some extra traffic.

We only held the sale for two hours, but we brought in double the profit from last year! We were humbled by the amount of friends and family that traveled from all over Atlanta to come and support Ruby and the Buddy Walk. It was amazing to see the cars pull in and park....every time someone else showed up it was like a party. We wore our shirts, and some of our patrons wore theirs also. In addition to our far away supporters, we had a few people from the neighborhood stop by and ask about our cause. Very cool.

At the end of the day, we brought in $350 AND had a $200 donation to add to our efforts; over $500!

Buddy Walk

When we first got Ruby's diagnosis, a friend told us about the Buddy Walk. At that time we were still trying to process everything, and given how careful we chose to be about exposing Ruby to the general public in her first six months, we opted to skip it. But since early summer, we've been planning for Ruby's first walk this fall.

A friend designed a logo for us with Lehr's "Ruby is a Gem" motto, and we made it possible for friends and family to buy shirts. Then we established our online team so that anyone who wanted to join us could sign up for the Atlanta walk. All proceeds were to help fund several local resources, including two Ruby uses often: the Emory Clinic and Gigi's Playhouse.

Leading up to the walk, I was amazed at how many orders for Ruby shirts came in. I had voiced our desire for people to buy a shirt to wear around town in an effort to strike up conversations about Ruby and Down syndrome in general, but the amount of people who did just that blew me away. Even weeks after the walk, I still see her red shirt pop up on Facebook or at church. And I asked friends to post pictures of themselves wearing the shirts; everyday we got a few new photos from all over the United States! As of the week of the walk, 112 Ruby shirts are out there, spreading awareness....crazy!!

Since I set the team page up online I was able to see how many walkers signed up. This was another awesome surprise. Our team kept getting bigger and bigger; over 80 people signed up to walk! AND the amount of money donated in Ruby's name grew so much that it never left the leader's board. Team Ruby started at second place and eventually moved down to fourth (for most donations in Atlanta). We ended up raising over $4K which was more than 200% of our goal!

When the day of the walk finally came, we were pleasantly surprised (SHOCKED!) that all but two people who signed up were able to come to the walk, and several others showed up and registered on that day, bringing our total number of walkers to 96! Ruby grabbed a looong nap on the way to the walk (smart girl), so she was able to stay awake for the whole afternoon. We set up a small tent near the back of the park and greeted the many many Team Ruby members that came. Everyone had a blast eating and playing games, throwing the football and catching up... It was a perfect day. The walk itself started just before 4PM. We all lined up outside of the park and walked the perimeter.

I cannot quite express how blessed and loved Lehr and I realized our family was on that day. The amount of support for Ruby is something I can't wrap my brain around; it reaches so far and is so all-encompassing. Donations pouring in, people wearing my daughter's name across their chest, almost 100 people choosing to spend their Sunday with us, our pastor mentioning the walk in his sermon, countless friends surrounding Ruby on that day, just trying to get a hug, a hold, or even a smile.....these are just a few of the many ways our family has been so blessed.

Team Ruby

We are SOO excited for the Atlanta Buddy Walk. The NDSS founded the Buddy Walk to help raise awareness and raise funds for supporters. Our Buddy Walk helps fund Gigi's Playhouse, so we are very vested in fundraising. Our goal for Team Ruby this year is $1000. I'm hopeful we blow that out of the water and can set our sights higher next year.

This October we will do a mile or so walk in Centennial Olympic Park with lots of others who know someone, love someone, or support someone with Down syndrome. We've asked anyone who wants to join us to sign up for the walk...the more, the merrier! We've also designed a shirt to wear the day of the walk, or whenever the mood strikes you! We're hoping friends of Ruby all over the United States wear their shirts and start conversations about the reality of Down syndrome.

Lemonade for Team Ruby

This weekend was awesomeness. It was one of those great weekends that just happened. No plans, no schedules, just neighborhood fun. Friday afternoon found the kids and I playing in the front yard, and then the backyard. Somewhere along the way, we picked up our neighbors in our games. Virginia was talking about a lemonade stand on and off, but it was suggested we hold it over the weekend to pull in more traffic.

Fast forward to Saturday, another awesome outside play-day. One activity just melted into the next and at some point the girls were in Virginia's house making signs for the lemonade stand, which was now slotted for Sunday afternoon. The girls came over to ask me for a picture of Ruby because they wanted the lemonade sale to go for the Buddy Walk.

Can you say 'awesome'?

So just after church on Sunday, we put "Ruby is a Gem" shirts on everyone and went up the hill to set up shop. Virginia had cookies, rainbow loom bracelets, and lemonade. The girls' signs were great, and we even had a tip jar!

Maddux only spilled two or three cups, and only dumped a few handfuls of ice throughout the afternoon. We had LOTS of traffic coming to support the girls. Aunt Megan came all of the way across town, and many friends came from all over East Cobb.

The final count? $130!! Somewhere along the line, Virginia's dad said his firm would match the proceeds too, so big win for Team Ruby!