Saturday, June 09, 2018

Gigi's Gala 2018

If you know our family, you know that we love Gigi's Playhouse. Since Ruby was born we've visited the Atlanta location several times each month, if not weekly. We've met friends and therapists there that will always have a special place in our history - in Ruby's life, from John and his therapy dog, Owey, which Ruby saw often for a while before she started school, to Ruby's peer, Norah (and her mom and her siblings), who we still see at least once/month.
As a free facility, fundraising is necessary, and the biggest fundraiser of the year is the Gigi's Gala. It is an all-out, black-tie, fancy schmancy affair that is unlike anything I've ever been to before. I've helped with the photography side of it for two or three years, and last year Ruby got to attend the 'cocktail hour' with Lehr. She LOVED this last year, as she got to hang out with a volunteer and dance and play, with Daddy as close or far as he felt comfortable.

This year they upped the ante on us: I shot it, Ruby and Lehr attended, and they asked me to speak. While the attendees of the Gala have a connection (and some funds to share), they are not typically people I see at Gigi's, so I got the idea that having me speak was a way to share a 'real life' Gigi's family.

While it was a huge honor to be asked, I've never given a speech before, especially not to a more 'civilized' audience. (I give speeches to my kids every day, if I'm honest, but those are more of the rambling kind, if you know what I mean.) I wrote my speech, had someone proof it for 'flow', and then practiced talking through it endlessly in front of Maddux and in my car. For weeks I would dance around the words, trying to find the best phrasing and cadence.
The night of I was scared to death, and my last minute practices in the restroom were not going too well. But when I took the stage it became a bit of muscle memory and I was able to wander through my speech, ad libbing where I needed to and hitting the points I needed to. I only had to look at my notes once (the same spot that always made me pause when I was practicing)! It was an amazing experience, to be asked to move way outside of my comfort zone. I so enjoy connecting with families, new and 'old', and helping newly diagnosed moms when I can. But to speak so broadly and formally was scary, so I was incredibly humbled to be met by numerous attendees (in tuxes and fancy gowns, no less) after I got off stage. They wanted to thank me and shake my hand and compliment my speech and presence. It was surreal.
Lehr and Ruby left almost an hour before I took the stage; we both knew pushing Ruby to 'behave' until 9PM in that overstimulating environment would be pushing our luck. But I reminded him that his presence would have probably made me even more nervous. (A good friend pulled out her phone and caught the speech on video for Lehr, and of course I have my notes.)

Imagine you are invited to the biggest party of the year. For months you search for the perfect dress. You want to find the shoes that make just the right statement, and your jewelry has to be just right. To say you are excited is an understatement. But as you open the door to enter, all noise stops and everyone's eyes are on you. Your excitement changes to panic as you realize that not only are you late, but you are way overdressed.  Every table is at capacity, every seat is taken. And now people are staring - but trying not to stare - as you nervously move around the room, anxiously searching for an available chair. Finally, you see one. You rush over and sit down, breathing a sigh of relief as you hear the party start back up around you. And what's even better, when you look around the table, you find friendly faces offering you a drink and asking about your day.


When my daughter Ruby was born, the new world we found ourselves in was that party, and Gigi's Playhouse was that table.



We did not have a prenatal diagnosis, so when Ruby was born with Down syndrome we were thrown into something we had never prepared for. We had no connection to anything related to Down syndrome, but luckily for us, a close friend found Gigi's Playhouse through a Google search. I still remember the first time Ruby and I visited Gigi's. We attended Therapeutic Thursday, which is a program involving physical therapists and speech therapists and occupational therapists, all working with attendees and their children in whatever capacity needed. But the therapy part is not what I remember most about that morning; it was the instant connection I had with two other moms I met. We talked all morning, exchanging similar diagnosis stories and comparing notes. The next week, I couldn't wait to go back. But instead of those two moms, I met and connected with a few different moms, with different aged kids and different stories. And the following week, the pattern continued.

It's easy to see how I quickly became a Gigi's Playhouse addict. It gave me such an great opportunity to join up with other families, families who were walking the same walk as us and who just got it. Not to mention, every time I attended, there was a volunteer therapist there helping me. This was huge - HUGE - for our family, especially in the early days when we did not have an established community to go to with our questions and concerns.

We celebrated my daughter's fifth birthday yesterday. Five years of Ruby. Five years of Gigi's. In the last five years, Ruby has visited Gigi's pretty much every week of her life, even through an eight month season of leukemia. And why? Because she has therapists and tutors and volunteers...  and friends. She has more friends through Gigi's than either of her siblings ever had. And those older siblings have been to Gigi's Playhouse dozens of times to participate in programs with her. They know Gigi's kids by name, and they have seen the great worth of our Down syndrome community. And me? I have a tribe, A HUGE tribe, that wouldn't be nearly the size it is without Gigi's Playhouse as it's backbone. This community is so important to me, so vital to my daily success as Ruby's mom that I even got a matching tattoo with a bunch of them earlier this year.

My family is forever grateful to all of you for supporting the efforts at Gigi's Playhouse, for seeing the potential of our kids, and for giving us a seat at the table.


Thursday, June 07, 2018

Shark In The Water

Another season of summer swim is upon us. Maddux and Eli have been doing this since they were 4 and 5 years old, and they are still goign strong. Each year, practices start, after school, a few weeks before school even finishes. Then practices continue, but in the morning hours. This year, with their ages being so 'old', their mornig practice doesn't start until 10:30AM...that is late!
A few meets in, and both are having success at having fun, with the occasional blue ribbon. Maddux claims her favorite stroke is back stroke, while I think Eli is favoring butterfly these days.
Ruby was not quite up to swim form for this season, but the big kids are excited for her to hopefully join next year.

Sunday, May 27, 2018

Wisdom

Proverbs 3:13  "Blessed are those who find wisdom, those who gain understanding."

I've noticed a lot of leaps in maturity with Eli in the last 6-12 months. For as long as I can remember, Eli's struggled with 'anger management' from time to time. And he's not our most empathetic child (even when he was an only child). But lately, he's been turning things around quicker, taking some responsibility for his actions, taking interest in caring for both sisters, and giving us snippets of 'wisdom' where life is concerned.
This is all very welcomed. Rest assured, there are still outbursts and, because he is a rising teen and a child in general, there is plenty of backtalk. But when it happens, he's more likely to come to us humbly and apologize or even just try to get back into our good graces. All of this gets my vote.
The latest installment of this happened a few weeks ago when Eli and I were discussing a musical item he wanted to save up to purchase. In the middle of our conversation, Eli dropped a wisdom-filled truth bomb: "If I work for something, I think I'm less likely to lose it."
So, apparently he does listen to us sometimes... If you need me, I'll be researching 'ways to retire from parenting when your oldest is 12', because I gotta go out on a high note and this might be my chance.

Thursday, May 24, 2018

End Of School

What a year it has been! Ruby has made so many great strides and met so many IEP goals this year; we couldn't be happier about her Pre-K year at Sope Creek!
With the end of the year comes parties and field days and celebrations a many. For the official field day, the 5th graders are given the great responsibility and privilege of escorting around the Pre-K and Kindergarten students during their time at field day. Of course Maddux asked to be assigned to Ruby!
Maddux was able to assist Ruby and her school bestie, taking them to each station and assisting as needed. They three girls had a blast and it was so fun to see Ruby taking it all in.
The end of year party was an opportunity for the parents to join the Pre-K on the playground for lunch and Popsicles and fun. Ruby loved having me there and I enjoyed watching her in her element, always interacting and checking in with her peers. We are going to miss our Pre-K 'bubble'!


Thursday, May 10, 2018

School Band

Tonight was Eli's end-of-year band concert. This year has found him practicing less at home (unfortunately), yet very much expanding his range on the trumpet. So much so that he asked permission to do a solo at Christmas, and when we hear worship songs sometimes he'll lean over and say to me, "If we ever play that at church, I could offer to play the trumpet part."

Tonight's selection was a good one, culminating in a Queen medley. (It made Lehr and I proud that Eli knew all of the Queen songs way before he started playing them in class.)

Tuesday, May 08, 2018

Jazz Fest

We left for New Orleans around 4PM, immediately after Eli got off of a bus returning from a school mission-prep trip. That landed us at our AirBNB just after midnight. While the kids did get some sleep in the car, that made for a late night for us all. But our clockwork girl woke us up at 7, ready to go.
Since it was May 4th, the little cafe we walked to for breakfast was serving Star Wars themed doughnuts. Well, not so much doughnuts as huge pastries that were filled with all kinds of things. (To eat one by yourself would be a mistake.) From there we loaded up the car and headed to Fest for Day 1. Our friends, the Overlys and the Hambricks, were joining us from Atlanta as well, but sans kids. We agreed to set up base camp at one of the bigger stages each day so that we all had a place to come back together for the closing set. On this day, we set up at the largest stage so we could catch Jason Isbell and Beck. The kids really really liked Beck. They were familiar with his latest album, but the older stuff stirred up an interest in Eli.
We haven't stayed until the very end in a while, mainly in the name of getting the kids some dinner and rest before the next day, but Beck's set went until 7, so until 7 we stayed. Then we leisurely made our way to our car (about a mile away), stopping through the neighborhoods to listen to and dance with street performers. This is easily one of our favorite parts of Jazz Fest. By the time we made it back to the Pilot, it was dark and there were only two cars in the entire lot.

Day two started similarly, but with beignets instead of doughnuts. Today's 'big' show was The Revivalists, so we set up at a different stage, prepared to rock out from a safe distance. (Holding the rail all day for a front row spot is a little harder with kids, and it makes it hard to enjoy the rest of Fest!) Maddux and Eli consumed so many favorites, from crayfish beignets (Maddux's go-to) to red beans and rice (my and Eli's favorite), from mango freeze to snowcones...the food flowed freely. This year was the first time we let the kids occasionally go (together) alone to buy food while we stayed at our base camp. I'm still not sure how I feel about that (them growing up and the safety factor).

We had a few moments of rain, so the five of us took that opportunity to visit the Economy Hall tent where there is a dance floor. While Lehr and the girls were dancing, a fest regular approached them and asked to dance with Ruby. She declined, but Maddux accepted and an impromptu lesson followed. She had a great time being twirled around the dance floor by someone who knew what they were doing!
All nine of us made our way back to base camp for the act just before The Revivalists to make sure we were in place. It's a good thing too because that stage's lawn is smaller and it was MOBBED. So much that even the 'moving' areas of walkways inched along slower than Snowmaggedon traffic in Atlanta. Once the music started for the Rev set, we all settled in. But maybe two songs in, we got very distracted by some swarming in the sky just to our left. It was maybe 30 yards away and appeared to maybe be termites (they are big and active right now in NOLA). But then some started flying over our heads, leaving the swarm, and we realized they were too big to be termites. Sure enough, they were bees. No one appeared to get stung, but somehow their home was disrupted (we never saw a hive) and they were all abuzz. By the end of the Rev set, medical staff was around the area (just in case), and the bees seemed to have dissipated. But when I walked over to look at the area they were, I saw that the bees were still there, but congregated on the underside of a chair. Apparently the queen decided that was their new home, so they all followed her. It was the craziest thing we'd ever seen!

Bee drama over, we started the final set of Cage the Elephant (my favorite of the weekend, probably!). Maddux hula hooped the entire day, I think, using the break apart hoop we bought for her birthday many many years ago. At the time we had no idea we were raising a fest-kid! Day two found us closing the fairgrounds down again, and dancing in the streets again. Every time we would stand and watch street brass bands, Ruby would get in front and dance and make her general 'horn' imitation. And every time, one of the band members would walk over to her to let her see/touch their horn. And every time, she would try to grab it and run. After a few bands, we stopped by a friend's house for a quick birthday celebration before heading back to our car. Only in New Orleans do you swing through for a piece of birthday cake for a child at 8PM, and get served dinner in the process, just because.
Day three was back at the big stage for Jack White and Trombone Shorty later in the afternoon. We set up camp and then ran to the opposite side of the fairgrounds to catch Flow Tribe opening. Ruby loved that, especially when they played her song. She was sitting in the BOB, but when she heard the opening notes, her eyes got big, she got out of the stroller, and she bolted to the front lines. (It was so early in the day that it was easy enough for Lehr to catch up with her, thankfully!)

At one point I took the girls to the kids' tent, mainly to get a break from the sun. There was a Chinese dragon dance troupe on stage. Ruby loved them, standing up front and mimicking their jumping (she called them 'puppies'). But at one point they came off of the stage and into the crowd, and when they approached her, she freaked out. Apparently large colorful dragons/lions are frightening?
Eli pushed his way to the rail for Jack White, and I think he videoed the whole show. He loved being so close to one of his favorite musicians...he had a great view of all of his guitars and how he played each one. Trombone Shorty followed and closed down Jazz Fest for the year. We spent a lot of time hula hooping (Eli and Maddux are AMAZING, but the rest of us are not) and blowing bubbles. Once again, we are raising fest-kids, obviously! Our Atlanta friends packed up their car and drove home, and we slow played it back to our car. Once again, New Orleans treated us right.

Thursday, April 26, 2018

Dance The Night Away

Another year of middle school, another middle school dance!




 
Eli was just as willing to attend this year's dance as he was last year. With the theme of 'Hawaiian luau', he wanted to get some new threads. (As much as we love the uniform part of private school, it means his non-uniform wardrobe is pretty lacking.) The night of the dance, Eli and Drew spent time playing whiffle ball in the backyard (after they were dressed and ready to go). It's not likely the girls took the chance of messing up their look so close to the event, but there is the great divide between middle school boys and girls, right?
The 7th grade boys all gathered at one family's house a few hours before the dance with the intention of eating there (catered tacos) and walking over together. This was SUCH a great idea (and so generous) by the host family, as it allowed several boys who likely wouldn't have come to the dance to feel 'safe' to walk in without the fear of not finding a friend.
The boys ate and hung out and generally behaved themselves very well prior to the dance. I came to take photos before they left and was pleasantly surprised to see the maturity level. Once at the dance, some of the girl-boy dynamics started to play out. We all remember this age: the girls are noticing boys big time and doing whatever they can to get the boys to participate in the social ritual of flirting and dating. Some of the boys were pulled into this and had 'dates' that they were shoved onto the dance floor with once or twice throughout the night. (Thankfully, Eli hasn't had the opportunity or desire to enter this yet. He is listening to our lectures though, as he said to me the week before, "Mom, I don't get why people our age think this is a dance where you take a date. I mean, NO ONE is driving anyone there or paying for their meal or anything...they are too young to date!")
Eli had a great time hanging out with his friends, and I couldn't resist taking this photo of him amidst all of his peers. It's very telling of his (non-phone-or-device-having) existence these days. Therapy bills will start to pile up any time now.

On A Roll

Ruby is on some crazy streak(s) these days! Her speech is improving all of the time, allowing her to string together broken sentences spontaneously. (When playing by herself, I heard her say, "You hurt? Doctor. No, happy now. OK, bye-bye.", and when she's playing with me she will say combinations of, "Come, sit here, Mommy. No books, puzzles, please.") And her maturity in some situations is blowing me away. She is walking into the grocery store with me more often now (as opposed to riding in the cart so I can contain her), and she is doing many things independently.

Yesterday was the Kindergarten Sneak Peak, and Ruby rocked it. We talked it up a lot at home, reminding her that while it was her same school, this was for 'big kids'. When she and I arrived, she held my hand as I'd asked her to, and waited in line for our table assignment. Once we arrived at our table, Ruby immediately sat down, in control of herself, and started to color with the supplies laid out for her. The teacher in charge of that table told me that I was to go with the adults, leaving Ruby there to wait for the rest of her table before walking to the Kindergarten classroom. I was hesitant, but Ruby stayed seated, coloring and listening for instructions. She was very controlled and obedient!

Ruby is also starting to progress with her fine motor skills, which is huge because that is so vital for handwriting. She holds her crayon or pencil correctly almost every time without assistance now, and she is getting better on trying to stay in the lines with her scribbles. When she was born, we focused on physical therapy immediately, to get Ruby to a place where she could sit, and crawl, and walk, because she had to be able to physically keep up with peers. And then we moved to speech because talking is important for early socializing. Occupational therapy for fine motor skills, while important, always took a back seat to the other two. So while we've always worked to strengthen her fingers through signing, play-doh, etc, the percentage of time spent on OT is way less.
In the last month or so, I've really hit this harder at home: we practice on the upright chalkboard a lot (that makes it a little easier), and we trace highlighted letters and numbers often. Ruby is really good at tracing her name (or anything) if it's highlighted on her paper first. Last week I broke down my verbal cues for her writing a capital "R" in a different way and all of the sudden she was making "R" on the chalk board. Then her teacher sent this home yesterday.
So exciting that she wrote this all on her own!

Saturday, April 21, 2018

Middle School Dance

Eli had a blast at last year's dance, so it was of no surprise to me when he opted to attend again. He and Drew would, of course, arrive together. We didn't have to leave for the dance until 5:15, so there was plenty of time after school to shower and get dressed. For a middle school boy, this takes all of 10 minutes. With the remaining time, Eli and Drew played golf in the yard (and they may have fished a ball or two out of the creek.)
This year his class of boys met up at a nearby house for dinner before walking to the dance together. I got to show up in the middle of that to take pictures of the group of 24 before going to the dance for more photos of the event. I was impressed with how well behaved the boys were, especially considering that they are all 12-13 and there was a pool within arm's reach at all times.
The dance was a lot of fun, but there was more boy-girl 'drama' than last year. While Eli was aware of it, he wasn't a part of it, so he really tried to distance himself from it. As any prying mom would, I asked several different ways for more details the days leading up to and following the dance. As best I can tell, he really doesn't get the whole attraction to 'the chase', and is happy to find another person or group to hang out with when things start to get awkward and angst.
Eli is definitely the class clown...I'm not sure how much of it is him being the funny guy because he wants to be, or if it's a little bit of a defense mechanism for being picked on. I didn't witness any unfriendly interactions, but Eli's friends are all quickly growing taller and their voices are getting deeper. Unfortunately for him, he is not following their lead as of yet.

Tuesday, April 10, 2018

Ruby Updates

We are still on an upswing of skills, especially in the speech area!

Speech
We just keep enjoying the flow of words coming out of Ruby. She adds new words weekly, and constantly becomes more and more intelligible to people outside of our house. Her latest words/phrases are:
  • Whaaat?!? - This one is hilarious because, while it is not a new word for her, she will respond with this when someone says something she didn't expect. (As in, she uses it very appropriately! Last week I told her, "Ruby, we are going to pick up Maddux and Davis, and he's going to hang out at our house until soccer practice." She responded with "WHAAAT?" And the best, 'what' face ever!) I need to capture it on video, but she pulls it out at the best, most unexpected times and cracks us all up in the process.
  • Counting to 10 - she will do it all of the time, on her own, in the backseat, when playing with toys...rarely does she make a mistake anymore.
  • A - Apple - Ruby LOVES to find letters and then tell me what word they go with. Or tell me what letter a word starts with. A few weeks ago we were playing with legos and she put one skinny one perpendicular on top of another and said, "Look, Mommy. 'T' Ty-ler." And yesterday while we were discussing Eli's school opportunity to dress up as something relating to the first letter of his name, Maddux asked Ruby what she would dress up as. She promptly responded, "Ra-beet". Dang, she is a smart cookie!
Physical Therapy
Ruby is playing soccer on Sundays this spring to keep her gross motor skills in check. Her balance continues to improve, and she loves loves loves to run! We are also doing swim lessons once a week. Ruby loves the water and after a minimally rough start, she loves getting in the pool and working with "Miss Kelly". We will not be ready for swim team this year, but our hope is that she will join Eli and Maddux next summer.
Ruby is climbing everything she can when outside, especially on the playground. A few weeks ago I took her to a playground with a taller rock wall (straight up) to a flat surface. I stood below her, nervous how I would be able to catch her if/when she fell from so high, but she scaled that thing without so much as a hiccup. And last weekend I took her to a birthday party at a 'bouncy house' place. She worked so hard to get through the long, inflated obstacle courses. One almost took her out, requiring her to climb up a wall that was pretty high, on small little blow-up foot supports. But she never gave up and finally made it out. (And then asked to go back and repeat it a dozen more times before we left.)

Occupational Therapy
At home we practice tracing letters a lot. Ruby's grip on pencils and crayons is improving, and sometimes she can write a few of her name letters without the guidance of tracing. Her coloring is becoming a little more refined also; she still can't stay in the lines, but now she attempts to stay closer to the part of the picture she is coloring. Her cutting is improving as well; at school she consistently cuts out shapes, even turning the corners by herself sometimes.

Monday, April 09, 2018

Community

If you follow social media posts of anyone who has a tie to Down syndrome, you've likely seen #theluckyfew. This hashtag references the belief that those of us with connections to someone with Down syndrome are 'the lucky few' in this life: we get to learn firsthand that joy and beauty can be found in unexpected places. It's a perfect combination of words to describe the life we get to experience through our family members with Down syndrome. Recently for me, it's also a way to label the opportunities the lucky few of us are given in they way of connecting to others.

When my daughter, Ruby, was born almost five years ago, I immediately sought out someone - anyone - to talk to. I knew I needed to find an avenue into this diagnosis because I had no reference point for Down syndrome. I didn't know where to start; the only thing I knew was that I knew nothing. 
 
Of course I went online where I found a few blogs and binge-read them in those first few weeks. And a doctor gave us a phone number to connect with a mom in another state. Finally, I was pointed to a local mom who had her baby also, and we planned to meet up at Gigi's. I will never forget that first meeting because it was the first time I felt like I might be able to do this. That morning I met two moms who were just like me with kids just like Ruby starting out just like us. And I breathed a sigh of relief.
 
Over the next few months, I went to Gigi's every week, meeting as many moms as I could, making conversation with every person in the building, gathering information from every therapist or specialist or 'someone-who-knows' offering their knowledge. I found this whole new world filled with friends and information and support and amazing kids. I found a community. And I realized very quickly that Down syndrome forms an instant bond for all of us. The two moms I met that first morning are still my friends, and we check in with each other regularly. Now, almost five years later, I have added so many moms ahead of me, behind me, and right beside me on this journey. All of them have shared with me as I've shared with them, and when things arise like speech issues, potty training, IEPs, cancer...they give a hug and they offer advice and they have your back.

Fast forward to a few months ago when some of the moms in one of my local circles started talking about another group of moms that met up at a conference and got similar tattoos to signify their kinship to each other on this T21 journey. I was all in. The connection I've found with the many women, near and far, that share this walk is a very strong one. One so strong I can only refer to them as my tribe, because that word is defined as families or communities liked intricately, even by blood. The list of moms that have played such a significant role in my journey with Ruby is so long, and even includes some that I've only talked to once or twice. I can say without a doubt that they are all lifelong friends, and they are absolutely my tribe. (In fact, I write all of this after a morning spent connecting with at least a dozen local women in my tribe - a few new to me and some, very 'old' and dear!)

So what is the tattoo and what is the meaning behind it? For me the three arrows represent the triplication of the 21st chromosome present in Down syndrome. The arrow shape because sometimes God knows we need to be pulled back, maybe even held in place for a bit, before we can move forward. But when we are stretched, oh how high we can soar! What God has used Down syndrome to do in my life is something I can't even explain. It's something so much bigger than anything else that it even made cancer seem small. It's something that has forced me to lean on other moms in a way I never thought I would. It's something that allowed me to be there to help other women when they needed someone to tell them it was going to be OK. But why a tattoo? Because when something changes you as permanently as Down syndrome does, something permanent to represent it just makes sense.