Tuesday, July 12, 2016

Summer Swim

This year's swim season was a much different one than any we've had in the past. For starters, I only attended 5 or 6 practices total. That is a far cry from me being at the pool every weekday morning for about 90 minutes! This year found Ruby with doctor appointments and therapies many mornings. So many that 3 or 4 days each week Eli and Maddux would have to ride their bikes to the pool and meet me back at home when they were done. Crazy that they are old enough to do that!
The other way this season differed from years passed is the amount of meets we attended. We had our church camp interfere with one meet and an overnight camp interfere with one meet. Unfortunately that only left three meets for the kids to participate in. They loved those meets, but it felt like only half of the season.
Both kids swam very well this year. Maddux swam 'up' for practice, working with 9-12 year olds each morning. (Eli swam up too, but the 11-12 group practices at the same time as 9-10, so no one noticed :) I felt like that helped push Maddux a bit; her efforts were rewarded at the end of the season when she received 'Most Dedicated Swimmer' for her age group.
Finally, we did not plan to attend the county swim meet this year (timing was off), but there were three other 7-8 year old girls from our team competing, and they needed one more swimmer to participate in the relays. She helped them out and they placed second for their freestyle relay! Maddux did a great job in the anchor spot, coming back from being behind when she jumped into the water. Such an exciting event!
Maddux has talked about doing year-round swimming, but we are waiting until the school year starts to sign up. She is an excellent swimmer and enjoys the meets, but she is known for momentary interests, so we are trying our best to make sure before we commit. I hope she does; she would do so well in this sport!

Radio Head(s)

We were contacted several months back about speaking on the radio during a fundraiser for the Aflac Cancer Center (where Ruby stayed during her chemotherapy and where we visit monthly for appointments now). As scary as that sounded, I passed up an opportunity to do that during one of our longer stays at the hospital, and I regretted it, so I told the Care-A-Thon team "yes".

I put the date on the calendar, but didn't give it much thought because it was so far away. Then the team contacted us a few times in the last week to firm up details and verify our attendance. Last night I thought through some of the potential things that would come up in our conversation (we did not have a list of questions or topics to be prepared for), and I tried to prepare for how I would respond.
Before we even walked into the building we ran into a friend. Her son and Ruby play at Gigi's and we have been so blessed to get to know them in the last three years. That helped calm me a little, but then when we checked in, we found out that we would be slightly delayed from our original time. Enter nerves again!  So Ruby kept herself busy in the infusion clinic...a place that I honestly loathed visiting during our treatment. A much easier/more pleasant visit today!
After about 30 minutes of play, they came and got us. As you might imagine, I didn't say half of what I prepared. The 'interview' went so fast and I wasn't able to process when he ('he' being Herman Cain) would ask something else or break in, so what ended up on-air was not any of the planned stuff. Such is life!

Here is the interview.

And here's what I planned to say:
When asked about the moment of Ruby's diagnosis, I planned to say that it wasn't hard. Ruby's diagnosis at birth was hard, because of our ignorance to T21. God used that initial diagnosis to make everything else that we've faced since then 'no big deal'. We had some tears, but God used Ruby's cancer to show us just how strong and capable this girl is, because her first diagnosis found us fearing she would not be either strong or capable. Cancer is shocking, but it's all relative, and we were blessed to not be blindsided by it because we already knew that kids with Down syndrome are more likely to get leukemia than other kids. That being said, we are so blessed that our pediatrician insisted on routine blood tests because even after Ruby was diagnosed, she wasn't symptomatic, so without that test, she could have gotten much sicker before we started treating her.
When asked about how our time at Aflac was, I planned to say that it was surprisingly ok. When you think about living in a hospital, it can be scary, but the reality was pretty 'normal'. You get into a routine and start thinking about your room as your living quarters and you just make the best of it. Ruby and I would have several things we'd do each day to keep us busy. After we had breakfast and did speech exercises, we'd walk the floor (or if we weren't hooked up, the hospital). We'd visit the garden or the playground and then come back for rounds. Then we'd repeat that cycle a few times during the day. The lunches delivered by Cure for the families on the AFLAC unit each week were a welcomed change from whatever combination of hospital food and snack bars I had. And the several times a week opportunities to dance and sing with the guys at Songs For Kids were therapy for me as much as for Ruby. Atlanta Clown Care made Ruby smile every time she saw them. And that's not even mentioning the volunteer readers and therapy dogs and the countless nurses and other CHOA and AFLAC staff that we encountered each day that helped us keep a smile on our faces.
When asked about how our family dealt with Ruby's cancer, I planned to say that it was hard. It was hard living in the hospital for most of 7 months. It was hard to miss Eli's last year in elementary school. It was hard to miss soccer games and field trips and other 'big kid' things that Maddux and Eli were involved in. And it was hard to live apart for our family. Ruby's first month included several visits at the hospital, but after that, we were in flu season, so the kids couldn't come to the hospital.

But we were so fortunate that this happened in the age of technology where the kids could see Ruby on Facetime each night, and Lehr and I could see each other over breakfast each morning. And we were incredibly grateful for the friends that took care of our older kids while I was living at AFLAC with Ruby. So many people stepped up in so many amazing ways...we couldn't have done it without them. And the big kids got to attend Camp Sunshine for a sibling camp, and they got to spend more one-on-one time with each Lehr and I as we traded off, so there were silver linings everywhere for them too.

When asked how Ruby is now, I planned to say that she is stronger than ever. God used Ruby's cancer and our time at the hospital to pull us closer to Him and remind us that He has us. Ruby has completed her treatment and is back to being a toddler who runs and yells and gets into everything.

So I didn't say half of that, but Ruby charmed the room, and she babbled on-air, and Lehr and I hopefully got to pass along a success story related to a place that doesn't always get to celebrate those.

Tuesday, July 05, 2016

Fleeting Moments

So here is a recap of a conversation that took place yesterday. Eli and I were running the race, and I was chatting along, trying to keep him from getting too distracted by the heat. Every few minutes I'd see something in the spectators or on the course and point it out to him. ('Check out that guy's shirt!' or 'That band reminds me of New Orleans.')
Then I saw something that made my throat tighten. Over a dozen men on the sidelines, wearing white shirts with the American flag, handing out water and high fives and shouting encouragement. And I was so touched to see the interactions between them and some runners.

Between these Muslim men and some white runners. Like a tiny glimmer of hope in a world that we have been painfully reminded is so broken so many times in just one summer month.
Me: Eli, I love their shirts...did you see what they said?
Eli: Muslims for something...maybe America? (There was an American flag on them)
Me: Muslims for loyalty. What do you think that means?
Eli: That they feel like America is their home.
Me: Me too. Why do you think it's so significant that they are over there, cheering us on, wearing those shirts? What do you think they are trying to tell us?
Eli: Maybe that they are not trying to hurt us.
Me: Why would they have to let us know that?
Eli: Because most Muslims have made bad choices...
(I cut him off after he said 'most')
Me: No, no, no, Eli. SOME Muslims have made choices that have hurt others. You've got to be very careful about listening to what others say in the news and even in your school...if you believed that one represented all then you get yourself down a bad road. Many people believe Christians are all judgmental and unloving because of the choices and public statements of some. Do you think that's true? Do you think that we are mean and judgemental?
Eli: No.
Me: Do you think Pastor Rob is unloving towards others?
Eli: No.

Me: Do you think Daddy is unloving?
Eli: No.
Me: That's the point: there will always be some in a group of...whatever making a bad name for that group. You know those who follow Christ are trying to love people as Jesus did, even though some who claim to be Christians judge and hate others 'in the name of God'. And that's not fair to anyone..it makes it really hard for those of us who want to love and leave the judgment to God to convince others of that. I imagine it is even harder for Muslims to convince most Americans that they want peace, or that they are loyal to the United States. (Yup...Mommy just kept rambling on and on, as I do.)
Eli: I guess so.
Me: I think they are crazy brave to be standing out here identifying as both Muslim and American...there are some people who would feel so angry about them doing that that they might try to hurt them. It's easy for you and I to wear our red, white and blue stuff today. It's a lot harder for them to wear that flag on their shirt...

At this point a woman who was running right along side of us (over 50,000 people, so it's pretty tight quarters) looked me in the eye and interrupted me, "Good Job, mama. You're saying all the right things. Please keep it up."

This is the point when it seems pretty braggadocios...like I'm just pumping up what a good mom I am. But actually, it is the exact opposite.

This woman's words brought me to tears as I let them sink in over the following 60 seconds or so. They were kind. They reminded me that people around me could hear me. But mostly they pointed out that what I say has an impact. And mostly they exposed the ugly truth that I do not allow for nearly enough of these moments in the lives of my kids. I let them pass by way more than often than not.

Mostly I don't say the right thing, or anything at all, when given the opportunity. This was a rare moment that Eli and I were together with nothing to do BUT talk. He basically had no choice but to listen to me because the alternative was to think about running. And I had no other kids or housework or photo edits or anything to distract me from seeing something in his world and engaging him in a conversation about it while focusing only on it.

These moments don't happen nearly enough and I know it's almost always my fault. Most of the time it is easier to allow distractions to keep me from seeing these moments. Most of the time it's less effort to glaze over the difficult topics. Most of the time there is no time. But that woman reminded me that I need to make time for these moments because what I say to Eli matters and has an impact. The biggest impact is that I'm saying something to him. Who knows if Eli will remember what I said. Who knows if what I said was anywhere close to the right thing. Regardless, my job is to be his champion, his support, his teacher...so I need to keep making those moments happen at all costs.

Saturday, July 02, 2016

Cat Burgler


I remember Maddux climbing out once or twice (same crib), but it was because we had her trampoline next to her crib, so there was a soft landing. This girl...she doesn't need a soft landing. Her skills are finely tuned.

Friday, July 01, 2016

A New PT

Ruby officially graduated from Babies Can't Wait on her third birthday. This means that we no longer receive the speech and physical therapy services she received through those therapists. We have two other speech therapists (one speech and language and one myofunctional), but we opted not to seek out private PT. While Ruby's visits were once/week for the first two years, once she learned to walk, we were really in a good place, and only saw the therapist about once/month. Then once Ruby went into the hospital, it was once every few months, at best. Both her therapist and I were in agreement that the work Ruby and I did was moving her forward in her progress (climbing, running, etc.). When we saw her the last time before Ruby's birthday, we reviewed strategies for moving forward, and Ruby was praised for how well she is doing.
About a month before that, I signed Ruby up for a 'Buddy & Me' gymnastics class. Once a week she and I go to a local gym where a teacher sets up a few little courses and instructs our flow while we walk our kids through it. Ruby LOVES it. She listens very well in the class and follows directions at least as well as the other (typical) kids, if not better. She climbs and balances and maneuvers through the 45 minute class with a huge smile on her face. I've noticed her gait is stronger; she almost has a full run now. She climbs anything and everything (even out of her crib!), and does most stairs with the help of a railing. She loses her balance and catches herself often. And she can walk through transitions (door ways with different levels on either side, short curbs, etc.) without support.
To say this girl is thriving in her new physical therapy routine would be correct.

Wednesday, June 29, 2016

Summer Nights

We're loving them.
While this summer has proved to be busier than any we remember, we have still found some pockets of good old fashioned family time.
Our yard is always our favorite hang out spot, so whether it's riding skateboards down the driveway, playing ladder ball in the backyard, balancing on the fence, riding bikes in the cul de sac, catching fireflies, or chasing the sprinklers around the grass, the longer days of summer help us keep those moments in our lineup.
Our favorite is to eat a dinner just late enough that the outside table is in the shade...that is a surefire recipe for post dinner outside play.

Friday, June 24, 2016

VBX 2016

We say it's gets better every year, but it's true. This year's VBX (our church's version of VBS - including the X-factor and taking place at night instead of during the day) was ah-mazing. The creative forces that work all year to write dramas and create related games and choose fun music and incorporate activities that correspond, all while pointing to the gospel and weaving it through each night...they kind of rock. The experience they create for the kids who show up each year is unmatched. We are so lucky to be a part of it!!
This year Ruby was in one of the preschool rooms. Due to large numbers in the 3year old room, we kept her in the 2-ish year old room. Ruby rocked her classroom; she helped with the group task of making trail mix, had a blast in the jumpy castle, read books, and enjoyed her nights all around. Three of the nights, we came early to see the worship practice so I could take photos of Lehr and the team he was working with. This worked well for Ruby, as she could experience the music while not getting in the way of the actual event. She loved it and mimicked everything!
Maddux had a blast too. She was in a group with a friend who she usually only gets to spend one hour each week with. This week she got three hours each night. Every time I came upon her group she was having fun with the games and the lessons...she got a lot out of it. We drove a few of her friends from the neighborhood to and from each night, so even more time for her to be in her 'happy place'.
Eli really REALLY enjoyed his job. This was the first year Eli got to serve/volunteer instead of participate. He chose to work with the motions team ('dancing' and singing on stage during the worship sets) and the outside games. This meant Lehr picked him up early to arrive at church for a 4:30 rehearsal. From there he was to eat dinner with a group and then hop on stage to do the 'motions' (I call it a dance) to the worship set for each night. Then he would run outside to assist with outdoor games. As they cleaned up the field, he would rush back to the stage to do the final worship set. He took it all very seriously and had a really fun time.
The kids slept in until at least 8 each morning (late for the girls), and smiled so much their cheeks hurt. Life is good.

Friday, June 17, 2016

Overnight Camp

Eli and Maddux are in a magic summer of qualifying for two separate camps that are co-ed and target both of their ages for the same week/session. Given that each was a camp they both really wanted to attend, and their short overnight stays, we allowed both.
This past week found them at Woodlands camp in North Georgia. We were fortunate enough to line up our camp session with the Marshall boys (meaning all three boys got to bunk in the same cabin with 10 other boys). As it turns out, Maddux didnt' get to interact much with the boys at all, but she still had a blast. She hugged all of the girls (12 others) in her cabin before we left today, and she exchanged addresses with at least three so they could write each other. Maddux also told me that the girl in the bed above hers has a brother with Down syndrome. Apparently she had a picture of her family, and Maddux asked her if he has T21. What a cool connection!
Both kids went on and on about the fun time they had playing outdoor games and doing the water slide and the zip line and and and.... Maddux shared half a dozen 'cheers' with us that her team chanted each day; she was totally in her element.
Eli. He had a great time. Especially because he was with his best friend. I asked him about a photo I saw of a few kids sitting with counselors one-on-one. He smiled and said, "Oh yeah, that was for those of us that wanted to be saved."
Wait...what? We haven't really talked about that a whole lot. We've talked about baptism, but neither has expressed much of an interest at this point. They both seem 'good' with their relationship with God, and it wasn't something we have wanted to push at all.
Eli informed me that after chapel one day the counselors said that if you wanted to stay behind and talk with someone about being saved, you could. He opted to do just that. So so cool...he was all smiles talking about it. And now Maddux is asking about getting baptized. Life is good.

All four kids agreed that this was the most fun camp they've been to, and they want to return next year.

Thursday, June 16, 2016

Gigi's Camp

What a week! Ruby and I were at Gigi's Summer Camp this week while the big kids were at overnight camp. Even though we were *only* there for four hours each day, I don't think it was any less action-packed than the overnight one the kids went to!
Ruby barely made the cutoff by turning three last week; I was able to volunteer since she could be an actual camper. Each day she did arts and crafts and music and movement with a 'buddy' and all of the other kids.
We had between 20-22 each day; plus one volunteer for each kid and a few extra 'floaters'. In addition to all fo the fun activites planned, there was a special guest each day, related to the circus theme. One day was a clown/juggler/magician (the little kids LOVED him), one day was a gymnastics troup, one day was story tellers/musicians....there was never a lack of entertainment!
Unfortunately, the week caught up with Ruby today and we had to leave Gigi's early due to exhaustion and a potential fever, but for her first summer camp experience, I'm counting it as a success!

Tuesday, June 07, 2016

Mommy Maddux Date

That girl.
I can't get enough of her.
When she was four, we would have "Mommy Maddux Monday" each week. Eli was in first grade and she was in preschool the other days of the week. But on Monday? It was just Maddux and Mommy and we would go to the park or hiking or for a walk or to lunch...just hang out.
We don't get that very often anymore, but on occasion, we will steal a few moments away together. This week I had my first senior portrait shoot and I wanted a test subject to practice on a few days before. Maddux was willing.
And very able.
I also let her bring my back-up camera and shoot for herself.
I could have taken photos of her taking photos all night.
After we finished, we had a quick dinner and I just let her talk. 
Oh the things this girl has to say....

Saturday, June 04, 2016

Therapy Wrap-Up

What a week! We just finished school last week, followed by an extended weekend at the beach less than 24 hours later, only to return to a half week full of more than a regular week should hold!

This week was Ruby's last visits through Babies Can't Wait. As she ages out of that system next week, we had our final sessions with her speech therapist and physical therapist. Without intention, those sessions were back-to-back on the same day. This was bittersweet for us as Ruby has been with Sherri (her physical therapist) since the very beginning. Her first session took place when she was 5 weeks old! Sherri taught me so much throughout the last three years...the way she attacked PT with Ruby helped me shape how I handle all of her therapy, and I will forever be grateful to her for that. No breaks for our girl as she doesn't need them, and she's capable of so much if you just push her. Sherri taught me how to view every activity in Ruby's day as an opportunity for PT, and to this day Ruby is complimented on her form.
Paula came along later in the game, but she definitely gave us some great speech time. The main thing both Ruby and I took away from her is slowing everything down (Ruby tends to get very excited and amped up when playing new games in therapy). We will miss these women!
The day after we said good-bye to BCW, we had an appointment with one of the private therapists we love, Vivian. We are hoping to move to a more consistent, more often schedule with her, as she holds Ruby to her potential. She does for Ruby's speech what Sherri did for her PT skills. Our sessions with her are always full full full, and we are left with plenty of good stuff to work on. This visit found her happy with what she was hearing from Ruby. That doesn't mean she let her off the hook or that Ruby didn't have anything she needed to work on, but it is becoming obvious to everyone that Ruby's words are coming!