Thursday, February 15, 2018

School Stuff

Ruby loves school. Have I mentioned that? Because it's awesome...really awesome to have a kid love school as much as she does. And I'm sure I've blogged about many of these things already, but I love that they happen, so I'll write about them again:
  • When she comes back to school after a break, sometimes only after a weekend, she hugs her friends and tells them, "I missed you!"
  • When she gets in the car to go to school each morning, she recites their names and the letter each starts with, and sometimes she sings "Happy Birthday" to one of them.
  • When she and I are waiting at the front office for one of her teachers to come get her in the morning, at least as many kids say "hi" to her as she does to them, and if they can get a hug, their day is made. (And that makes MY day!)
Last week I was taking photos of some of the classes at the school for some upcoming projects. When I got to Ruby's class, they were in the middle of a Valentine's Day activity involving an obstacle course. It was SO fun to see the kids participating and loving all of the extra movement. Ruby, of course, smiled the whole time and couldn't get enough.

Monday, February 12, 2018

Father-Daughter Dance

Maddux and Lehr attended teh school's annual Father-Daughter Dance last week. Maddux chose to wear a very fancy dress that Lehr found crazy cheap online for last year's dance again. Aaaand she wore her Air Jordan tennis shoes with it.
The two of them had a great night, dancing and eating cookies. Lehr said she spent more time with him than she usually does at the dance (it often turns into her running around with her friends). The were invited to hang out with friends at a pre-party, which also turned into a post-party.

Sunday, February 11, 2018

Mother Daughter Bible Study

Just before Thanksgiving last year, Maddux and I started attending a Mother-Daughter Bible study. A friend and I were walking around the neighborhood one morning when she told me about how God had been putting something on her heart. As she spoke about this idea to do an intentional mother-daughter group, I was blown away because it was something that had been stirring inside of me as well.

So the two of us got together for a few planning sessions with journals and Bibles, and we planned out three or four 'lessons' with ideas for many more. The other mom already had a group to invite in mind; we wanted to stick to girls/moms very close by (like, in only two neighborhoods) that were all right around 10 years old. We sent the invites, created journals for the girls, and prepared for the first meeting. Low and behold, 10 girls and their moms showed up! That first night, we had great discussion, Bible-page-flipping, and lots of girly giggles (and hot cocoa, of course).
Since then, we have met twice a month, and I am so so grateful for it. Maddux loves going, and she is an awesome participant when we are there. In fact, one of the times, she voluntarily led us in a closing prayer. I love the intentional time I get to spend with my girl, I love the way we're able to connect to other girls and moms in our immediate area, and I love how God is growing both Maddux and I in leading, participating, and planning.

Saturday, February 03, 2018

More Tattoos

The Lucky Few Tattoo movement has remained strong in Atlanta. After our initial group-branding, there were many moms who were sad they missed out. And we had lots of dads that wanted in on the action. So some of my fellow moms organized a second 'tattoo party' with four artists (instead of the two that we had), and they planned for it to take place at Gigi's Playhouse. I was asked to take photos and was more than happy to oblige.
Lehr and Ruby were out of town, and Eli was at soccer tryouts all afternoon, so right after school, Maddux joined me, my back-up camera in tow. The event was slotted from 4-8PM, with local news coverage, both on Facebook live and on the 6PM news (with teasers in the 5-6PM hour). Maddux and I moved around the whole time, trying to take shots of it all, while also taking it all in.
I am often amazed at how well Maddux composes herself in new situations. We've obviously talked a little about tattoos in our house, but for some reason Maddux didn't totally get the process until this night. Thanks to the lens she was using, she was able to see the needle up close, and she saw how it went in and out of the skin. Later she told me how much that surprised her, though you would have never known by watching her.

Below are a few of the shots she got; she's a natural!

Tuesday, January 30, 2018

More School Fun

During Ruby's IEP meeting before Christmas, we discussed placement (meeting to follow in a little over a month). Her team currently feels that Kindergarten would be the best place for her, given her current strengths and comprehension of material. While we have not totally decided, we did ask that in preparation for that, Ruby be allowed to participate in a Kindergarten class at times during the spring. One of our concerns for starting K next year is the larger class size (where Ruby gets less one-on-one guidance for success), and the transitions to different classrooms. I'm not worried about it overwhelming Ruby; my concern is it will be so much and so exciting that she will struggle with impulse control (more than she already does).
The team was amazing and agreed without hesitation during the meeting. True to their word, the made it possible for her to join one of the kindergarten classes for morning circle time last week. After sitting in on (and loving) that, they passed another class on the way and joined that class as well. Ruby apparently knows that teacher and interacts often. She did great, sitting and working on handwriting prep, but did not want to leave when it was time.
After lunch and rest time today, Ruby joined yet another Kindergarten class for their music 'special'. Ruby sat when the kids sat, stood when they stood, listened and followed directions, and even thanked the teacher when it was all done.
My heart is so happy right now!

Friday, January 26, 2018

The Lucky Few

If you follow Ruby or any of her friends on social media, you've likely seen #theluckyfew. This references the belief that those of us with family connections to someone with Down syndrome are 'the lucky few' that get to experience the blessing it can be.

When Ruby was born, I immediately sought out a community, a connection. I knew that I knew nothing and I would need to learn from those that went before me. What I found was so much more. Moms I met at Gigi's, moms I met in my area of town, moms I met online, moms I talked to on the phone, moms I stalked the blogs of... What I realized quickly was how connected we all are by our children; it forms an instant bond. And when things arise like speech issues, potty training, IEPs, cancer, they have a hug and they have advice and they have your back.
Fast forward to about a month 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 (for adoption, I believe) and ended up getting similar tattoos to signify their journey and their connection to each other.
I was all in. I can count so many moms that have played such a significant role in my journey since Ruby was born, and many of them I've only talked to once or twice, or only texted. But that's the thing about Down syndrome: that instant bond.
Tonight a group of about 40 women gathered in a tattoo parlor (photos), laughed, hugged, met or re-met, and caught up on one another's journeys. Some got the original tattoo, some got a derivation to tie into a personal significance, some watched and gave moral support, but we all gathered. And then we went to dinner where MORE joined us and we continued more of the same. And it was perfect.
So what is the tattoo and what is the meaning behind it? For me it represents three arrows, signifying the 3 copies of the 21st chromosome present in Down syndrome. The arrow is because sometimes God knows we need to be pulled back, maybe even held in place for a bit, before we can move forward. But, oh, when we are stretched, we can soar so much higher! 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 cancer seemed 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 another tattoo? Yup. Because when something changes you as permanently as Down syndrome does, something permanent to represent it just makes sense. Even this guy thought so...

Monday, January 22, 2018

More Words

"Mom, I missed you!"

Seriously, does it get better than that?

During the last days of 2017, Ruby started saying "I missed you!" to people when she'd see them after a little time away. That little time away could be a few days trip, or a whole day at work...the point is that she uses the phrase and uses it appropriately. SO love this.

A few days ago, Ruby upped the ante. We were hanging out at the house (because with temps in the single digits and ice on the roads, we were stuck in the house for more days than I would prefer), and from across the room I said to Ruby, "I love you!" She grinned and walked over to me, hugged my leg (which I LOVE) and said, "I love you too, Mommy."
And now it is a routine phrase for her.
Melt. Melt. Melt.

I cannot adequately convey how amazing it is to hear your child put a voice on their thoughts and feelings when it's not something that comes easy. There were days, there are still days, when I would wonder if we would hear certain things from Ruby. Every new word or phrase she gives us is like the best gift in the world, especially because it is not a guaranteed gift.
This is a tricky one for me. I've been on the side (and I know I will many many more times) of seeing Ruby's peers with Down syndrome do things ahead of or 'better' than her. Especially in the area of talking. And when you're in that place of putting in so much work and seeing your child's efforts go without the reward of whatever it is you are working towards, it can be torture to see or hear about someone else's success. But at the same time, I know how important it is for us all to celebrate the milestones AND the hard work. So today I'm celebrating.

Friday, January 05, 2018

Talking Talking Talking

This girl just keeps going with her conversational speech! Over the holiday break she picked up a few new phrases:
  • "Oh WOW!"
  • "Oh my gosh!"
  • "Santa Clause. My HOME!"
  • "I missed you!" (my favorite)
  • "Oh, dangit"
  • "Oh, Yes, PLEASE!"
  • "Tag in back" (when referencing how to put on pants)
  • "I can do it!"
I couldn't love all of these new phrases more, especially because they were not intentionally taught; she just picked them up in her daily conversations with other people.
When returning to school this week, she hugged each of her classmates and told them, by name, "I missed you!". She also told her teachers that she was 'so happy' to be back at school.

Today is one year from the first day she walked into that classroom. I can't believe how far she's come in a year, and I couldn't be happier about all of the continued new

Thursday, December 28, 2017


So many times holidays can carry with them stress. Sure there are fun decorations and yummy foods and traditions to look forward to, but also there can be unmet expectations and meltdowns and just stress. For several years now I have tried very hard to prevent some of those stressors meltdowns by planning things in advance to head them off, or having talks as a family in the weeks leading up to the holidays. Honestly, this year I did not have much faith that it would be any different than years past. Thanksgiving had train-wreck components, my family would be visiting for over two weeks, some of that time would include Lehr's mom as well, and some of the pre-teen emotions present in Maddux right now have been piling on top of Eli's ever-present desire to control and know everything about the current situation.
It was a Christmas miracle though! We played board games every night, we sat by the fire and talked, we made food together and no one complained (too much)... we even managed to avoid an all-out scene/meltdown by anyone! And even despite us having cold cold weather (mostly rainy) confining us to the house most days, I honestly feel like it was one of our best Christmas seasons ever!
Eli got a little stir crazy one day and asked if he could take Ruby on a bike ride around the neighborhood. We hooked up the kid carrier to the back of his bike and set him loose. But in the process, he made a sign for the back of the carrier:
We had the opportunity to hang out with friends, spend time by the fire, make an awful big mess in the kitchen at least three times each day, and spend more time by the fire. The day after Christmas, we ventured out so the big kids could go ice skating; we went from being cold outside to being cold inside.
We did a scavenger hunt for Baby Jesus on Christmas morning. As much as my kids talked it up last year (because I didn't do it based on their handling of it the year before), they weren't too into it. But that was ok because the highlight of the whole week was the first annual CHRISTM-OLYMPICS! For about two months before everyone was to arrive, I started planning games for us all to participate in. They were basically minute-to-win-it type party games, and I'd changed them all to fit into a holiday theme. We ended up doing them after church on Christmas Eve and had to stop only halfway through because it got so late! Everyone got to participate, even Ruby!
(video shot and edited by Eli)

Thursday, December 14, 2017

Two Person Solo

Eli's love for all things music has continued throughout this year. It's easy for me to forget that he plays the trumpet because he spends so much time playing drums for the church and learning new things on his guitar in his spare time that we rarely hear the horn at home. But he plays the trumpet at least as much because he has band class every day at school. (This kid blows my mind!)

The other night we attended Eli's holiday band concert. He'd been telling me for a little while that he had a solo. While I thought that was really cool, I assumed he had a line in a song the whole band played that he was chosen to lead, or maybe even play alone. But at one point Eli told me his 'solo' was he and a classmate. Honestly, I wasn't sure what to expect.

After the seventh grade played their first song, their band director called Eli and another student up front. While they were walking through the music stands, the director told the audience that weeks prior, the two boys approached him and asked if they could learn and perform "Deck the Halls" for the concert. The director told them if they wanted to find, learn and practice the song on their own, he would give them a shot to 'preview' it to him the day before the concert to see if he might include it. They did and he did!

Eli and his friend each played different parts for a verse of Deck the Halls, taking turns playing and then playing together and they sounded great!