Ruby's Cheerleader

Ruby has been doing a soccer program on Friday nights for the last month or so. While she enjoys playing soccer in general, her main love of these Friday night sessions has been spending time with a new friend. Blair is a 5th grader who volunteers at the soccer nights, and she connected with Ruby the first time she met her. Since then, when they are both at soccer, they are inseparable. 

Blair is also a junior cheerleader and has taught Ruby some of her cheers. That quickly moved into Blair's mom arranging for Ruby to participate with Blair's cheer squad at the homecoming game; she even lent us an official uniform!

A little backstory on Blair: her mom works in Special Education, which has obviously had an effect on Blair. She connects with people, and has an amazing heart for and patience with everyone. It has been really neat to watch her with Ruby (and without!) over the last month!

Today was the big day: Ruby was beyond excited when we arrived; she could not take her eyes off of Blair (and it was mutual!). Once the girls were introduced, Blair pulled Ruby on the field to get the game started and then they cheered next to each other on the side lines. 

Blair was so amazing, never taking her eyes off Ruby and trying to explain all of the cheers as they came up. (There were a LOT of cheers!) 

She high-fived and encouraged Ruby at every turn, and never left her sight or let her feel alone. She even carried her back after they all ran down the field for an important play.

Just before half-time, Ruby told Blair she was tired and came to sit with me for the last 1-2 minutes of the half. I'm very impressed she lasted that long given all that she was taking in while she was participating.

We are so grateful for Blair and her mom, and everyone who let Ruby participate. These opportunities are ones that seriously just land in our lap sometimes and I have to believe they are intentionally given to us so that we can own our influence (Ruby's influence!). Maybe now one of the girls on the squad, or someone in the stands that saw Ruby will interact differently when they meet someone who looks a little like her, or maybe they'll even feel comfortable enough to say 'hi'. The world needs more Blairs, but I know that she doesn't exist without first knowing some Rubys.

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!

Ruby is 5!

"Me Booth-day!"

This is what Ruby has been telling us for the last week. She knows her birthday is on "zoon seffen" (June seven), and she has been so excited for that day to arrive.

The kids made her pancakes for breakfast, and we hung out, playing at home most of the morning. Because of our summer nights being full of swim meets and VBX rehearsals and soccer tryouts, we had her 'non-party' just before dinner. Close to 50 friends came over to raise an ice cream cone to Ruby as we sang 'Happy Birthday'.

Ruby loved seeing and greeting her guests as they arrived, but one got an especially enthusiastic welcome: her pre-school teacher, Miss Jennifer. Ruby ran across the yard and tackled her with a hug, grabbing her hand and telling her to 'come. sit'. She also attempted to introduce her to several other attendees.

As we've been made aware so many times before, we have an amazing village around us because of Ruby. She is so loved!

Bittersweet

Romans 5:1-5  Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, ² through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. ³ Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; ⁴ perseverance, character; and character, hope. ⁵ And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

I have a feeling that 'bittersweet' is going to be the true north emotion for many milestones to come.

Today marks three weeks. Three whole weeks since the last time Ruby was in a hospital bed. (That is lifetimes longer than any other home stay we've had since last summer.) Three whole weeks since Ruby had her central line taken out, adding a much needed step in the direction of what her life was before leukemia. Three whole weeks that have included preschool and baths and public play spaces and almost nothing medical.

But this amazing three weeks is also a harsh reminder of the difference between Ruby and so many other kids with cancer. Our time at home has included the passing of one child that was on the cancer unit with us. These three weeks have found another little boy who shared the AFLAC nurses and doctors with us on a few occasions back in the hospital again at least twice, this most recent time with infections that are giving him a fight bigger than his body seems able to handle.

So there is the bittersweet part: the part that makes it difficult to celebrate Ruby's remission. I've never met a parent going through an illness that doesn't rejoice in the health of others, that doesn't cheer on healing. But I have to think it's hard to see someone else's child get through treatments without much pause, only to move on with life when yours is still in the throws of the hardest moments you could ever have imagined. I can't even wrap my brain around what it feels like to make decisions no parent should ever have to make. It absolutely breaks me to think about the conversations that must be had. Between spouses, with the sick child, with other children... Anything we've faced pales in comparison to that type of suffering.

So I go back to these verses. 'Glory in our sufferings because we know that suffering produces perseverance, character, and hope'. I do not think God chose for Ruby to get leukemia or Grant to get neuroblastoma. No more than I think He chose for Ruby to be healed as anticipated and Grant to still be fighting. So I can only rest in this truth: God is with them both. He will use any suffering to shape the character of those involved; He will use the suffering to foster a home for hope.

And He will heal both Ruby and Grant; whether on this earth or in heaven remains to be seen.

I have to believe that because it feels crazy to celebrate three weeks of 'nothing' when that three weeks held so many life changing moments for so many others.

Brave The Shave

Such a cool event.

A few weeks ago I wrote about Brave The Shave. Since then, Eli, Lehr and Aunt Megan signed up to shave their heads as a way to raise funds for childhood cancer research. Then a friend of ours, Owen, (who is only 8 years old, by the way), signed up to do the same. Between Owen and the other boy who started this off (Griffin), we were so humbled to have kids outside of our family want to participate in Ruby's name.

And then my parents caught wind of it and shared the story with my grandmother. She asked if she could participate.

You heard me: Ruby's GREAT GRANDMOTHER wanted to shave her head in honor of Ruby.

GG doesn't live near us, so she shaved and had the hairdresser take a photo. She even raised funds to contribute! Combined, Team Ruby raised $2,150 before the day of the event. This included some cash that kids brought to Eli at church. Already, so exciting.

Then the day of the event, we got a few texts and emails from friends that were going to try to stop by and see the shaving happen. We arrived at 2PM and things started immediately. I was able to photograph the event, so that gave me a good front seat to the shaving action. But the stuff happening in the crowd (we were on the outside patio) and in the bar was so cool too. Maddux and some other volunteers went around with buckets asking for donations. And of course they got them. They also got some patrons to shave on the spot! A few random guys, two firefighters, and a handful of boys hopped in the chair last minute.

Ruby had a BLAST seeing friends and family there, and once she saw the first guy get his head shaved, she started walking around to everyone pointing to her head and then pointing to theirs (as if to say, "You're next?".) I still can't believe the amount of friends that showed up to support...so so cool.

Eli and Lehr shaved, then Aunt Megan shaved (she went all of the way to the scalp - no messing around!), then some friends from church (father and son) shaved on the spot, then Owen and Griffin shaved. And then Eli's best friend, Drew, asked if he could. This guy showed up to support Eli inbetween his busy weekend activities, and has never had a haircut short enough to even be called 'short'. But there he was, shaving his head "because Ruby asked me to".

There was a barbershop quartet (that sang to Ruby at some point), barbershop hairdressers that were all so awesome to volunteer their day for us (and they yucked it up with Ruby too), another boy battling cancer with his dad who got shaved, and enough warm fuzzies to last a long time. People are good. Community is good.

The Kindness of Strangers

Especially when their kindness makes them not strangers. When it makes them some sort of extended family that you may not see regularly.

I've gone on and on about the outpouring of love and help for our family, but the 'random' encounters with people we don't know is also oh-so cool. When you put your life out there on the internet, especially when you have kids and you involve them, it can be scary. In the past ten years I've had many sleepless nights wondering if I've done them a disservice, if I should pull everything about them off of the blog and my photo site and FB... Most days I would willingly share to reach our friends and family who are not close by, or to parents of kids with clubfeet. In the past two years I've shared even more, even more often, to connect with other parents of kids like Ruby, whether with Down syndrome or Leukemia. That opens us up to a lot. But the main thing (it IS the main thing) it opens us up to is kindness. Kindness because people can relate and they appreciate our posts. Or kindness because Ruby has shown them a side of something they had no prior knowledge of. Or kindness just because. We were blessed to have so many examples of this just in a week's span.

When Ruby finished her surgery today, her friend, Morris (the 'hospital tag guy'), and Amy, a woman Ruby and I met early on in our stays, came to visit Ruby. They brought balloons and a stuffed animal. They stayed and talked and entertained Ruby for about 15 minutes. Without FB, Amy wouldn't really know who Ruby was, having only seen her around the hospital a few times. But she tracked down Team Ruby's site and followed her and came to see us during some of our stays and brought Ruby (and her siblings) homemade hats. That is kindness....crazy kindness.

When Ruby and I got on the elevator to leave, the woman standing in it heard me say "Ruby" and said, "Oh my gosh...is this Ruby?! We all follow her online and love her!" I had never seen this woman before in my life. This is not a rare occurrence for us. When Lehr was walking her across to the clinic to meet me yesterday after our Aflac visit, he was stopped by several women in the lobby who knew Ruby and wanted to say hi. Lehr did not know them. That is kindness.

Last Sunday we attended a fundraiser for Songs for Kids. We were stopped by several people who wanted to talk to Ruby. They had heard through the grapevine about her. Maybe through one of the SFK musicians, or maybe through a friend. But they stopped and said hi and smiled. That is kindness.

On Sunday, we will hang out with people who are shaving their heads or supporting those who will, all in an effort to raise money for childhood cancer research. The first boy to ask to shave his head for Ruby has never met her. He found out about her through a teacher who happens to be a friend of ours. She showed him videos and pictures of Ruby from FB. This boy was hooked and pledged to shave his head for the first time in honor of Ruby. That. Is. Kindness.

I have to believe more good than bad is coming out of our *public* life. Because when someone stops you and makes a big deal out of your daughter, it offers a moment of sunshine in what may have been an otherwise tough day full of doctors' appointments, or procedures, or reminders of her delays, or what feels like parenting 'fails'.

Big Week

Grandpa Jim came to our house for a few days on his way to visit some friends. Ruby never missed a beat, calling him "Um-pa" and looking for him 100% of the time. She made it pretty impossible for him to resist her; he didn't do much other than sit on the floor with her, play with her, watch her eat, attend to her every request....good times.

On Tuesday, Ruby went to school and I went to the second 'transition' meeting for her. When she turns three, she will age out of Babies Can't Wait (the state service through which she receives some of her therapies). This transition moves her to a local public elementary school where she will receive preschool or therapies, or both. The meeting went VERY well. While nothing at all was decided in this meeting, the information I walked away with made me feel very hopeful about what is to come in the next few years for Ruby. The next step is an evaluation by a few therapists, followed by the IEP meeting. If you're a parent that's dealt with IEP's, you likely just cringed. I am hoping our first one goes well, and I am preparing as best I can to ensure Ruby receives what she needs in the next few years to set her up for 100% inclusion for Kindergarten.

Finally, today was spent at the clinic and hospital. Ruby had several pre-op appointments: cardiology for an echo cardiogram (her heart looks good), the Aflac clinic for a physical exam by her doctors and blood drawn (her ANC is 3750...higher than it's ever been since we've been testing it!!), pre-anesthesia on the surgery floor to check her out and to fill out all paperwork for her procedure tomorrow, and finally to the clinic to receive her final infusion through her central line (a medication she takes monthly to help protect her from infections).

In between all of that 'fun', we went to the Aflac Unit (where Ruby spent oh-so many days and nights in the last seven months) to deliver a basket of goodies to the nurses, techs, nurse practitioners, staff. We also had cards for about a dozen nurses that we really connected with during our time there; Ruby threw in a red stethoscope ID tag with her Team Ruby logo on it too.

Tomorrow is surgery day: Ruby will get her central line taken out! From here on out, she will only have to visit the clinic once/month to have blood drawn to check numbers. During this time she will take medication a few times a week to ward off infections while her bone marrow works out all of the kinks that come along with returning to 'normal' after chemotherapy. Eventually those visits will spread out and she'll only get checked once/year. We are super excited for the surgery to be completed, super excited to take a bath (she hasn't had one since August), super excited to become a survivor of childhood cancer.

Brave The Shave

The cool stuff keeps happening...

A few weeks ago I received a message from someone asking if we would mind if their son shaved his head in honor of Ruby. He has a teacher (who we know from church) who shared Ruby's story and a few videos with the class. Since his older brother had been shaving his head in in the name of kids going through cancer treatments for the last few years, he wanted to join in the great cause. She hadn't even lost all of her hair at this time, but of course we agreed. Now Ruby is an official honor kid of St. Baldrick's.

Then I started reading more and asking more about this foundation. St. Baldrick's is one of a few awesome organizations that is working hard to bring about change for the future of childhood cancer. They work with pediatric oncologists to determine the most promising research to fund. Then they create cool events to raise funding so that they can make the greatest impact for children with cancer. The grants that have come out of St. Baldrick's cover a wide range of childhood cancer, and are providing more insight and information about treatment daily.

One such event they host is "Brave The Shave":

"St. Baldrick’s head-shaving events began as a challenge between businessmen and have grown from one event in 2000 to over 1,300 events in 2013, raising critical funds for childhood cancer research. Events take place in pubs, restaurants, schools, churches, parks, malls, military bases, firehouses and any other place you can imagine."

My understanding is that this young boy, along with his brother and anyone else who signs up, will get their heads shaved to raise donations. You can sign up ahead of time, show up and get shaved, send in donation dollars, volunteer...so many options. Our family is planning to attend; we can't wait to participate in the excitement.

So if you'd like to come out and get your head shaved in her honor, or come out and watch others get bald for brave kids, or just donate to the awesome cause, click here. (This event is in Vinings, GA, March 6, 2016, 1-5PM. If you sign up, you can even join 'Team Ruby' on there.) We'd love to see you all out there (maybe wearing a Team Ruby shirt?), cheering on the brave kids battling cancer and the amazing people shaving in solidarity.

The Badge

If you know Ruby, you know she makes friends everywhere she goes. She walks through Publix, school, the hospital, LIFE, waving to people and saying either "hi" or "bye-bye". She stops at every open door, she tries to meet people's eyes, she smiles with her whole face: she just sucks you in.

Since we've been living part-time (half-time?) at the hospital for the last six months, Ruby has made a lot of friends here: doctors, techs, nurses, security, administration....she doesn't discriminate. But someone sure to always get more than a wave from Ruby is Morris.

When Ruby first started living at CHOA, we would cover as much of the hospital as we could each day...anything to not be stuck in the room if she wasn't hooked up. We would see Morris in the halls here and there and he would always engage Ruby, usually with a duck sound. Hook, line, and sinker. (Ruby is a sucker for realistic animal noises.) That turned into the two of them quacking at each other in the halls or on the Aflac Unit daily, if not more often. This last round, they had the nurses' station laughing out loud at their antics over the weekend, and Ruby started dancing her feet like Morris too.

So to switch gears, Ruby also loves the badges everyone wears. When a nurse or doctor comes in and checks Ruby, she always, ALWAYS, grabs for their badge, phone, and stethoscope (usually in that order). Some of the nurses and I joke that she likes to check every one's credentials before she lets them examine her. And just this week as Ruby and I were making our rounds on the unit (which includes slipping out the back door and utilizing the loooong hallway separating Aflac from the rest of the hospital), Ruby showed me that she knows the badges have power. We approached the door to re-enter Aflac and she moved close to the wall and lifted the front of her shirt towards the scanner. (The door can be automatically opened with a badge; otherwise you have to push it open, which we have to do.)

Back to Morris: one of our favorite nurses mentioned to him that he needed to make Ruby a badge because she checks every one's. Add that little story about her and the door and voila - tonight he presented her with her very own badge.

Oh how I wish I could have videoed the ten minutes after she received it. (Unfortunately Ruby is hooked up to chemo and it is all I can do when we are in the halls to keep pushing the chemo pole at the speed at which she takes the corners...no chance I could hold a camera during that.) This girl was SO excited. She kept looking at it and saying "OO-BEEE" (Ruby). In fact, she stumbled a few times because she was not watching at all where she was going and kept staring at the badge. Then she started running through the halls, yelling to everyone she saw, "OO-BEEE!", as she held out her badge or pointed to it. And when we passed something on the wall that resembled a scanner? You better believe this girl paused and told the scanner "OO-BEEE" as she tried to scan her badge.

Seriously, such a fun night...this girl wore herself out with that badge, up and down the halls. These are the details that make this journey memorable in a good way.

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.

WWJD

Galatians 6:2  Bear one another's burdens, and so fulfill the law of Christ.

Matthew 10:20  For where two or three gather in my name, there am I with them.

Another one of those rambly posts, most likely.

Here we sit at the beginning of round three, not even half way through this journey, and once again I am humbled by the incessant amount of love and support shown our family. The verse above talks about bearing each other's burdens. This journey has not been a burden so far and that is because so many others have helped bear it with and for us. That is the only explanation as to why the weight of everything hasn't crushed us.

And talk about the hands and feet...The community effect on our family has screamed Jesus in every way. Every prayer and meal and kind note created for our family was a gathering, whether it was a family gathering or one person attempting to gather with us. In the past two weeks (while we were mostly home, not in the hospital!), here is just a sampling.
(*I want to mention some of these not to brag about those lifting up us - though they are deserving of that - but to thank them because so many of them have been anonymous, so I'm not sure how to let them know any other way just how appreciative we are.)

• We have received several anonymous envelopes in our mailbox with tickets to Six Flags, gift cards to dinner out for Lehr and I, etc. Kind notes encouraging us included.
• Friends (some we know well, some we have never met) have sent us little (and big) care packages, often including something for the big kids.
• Ruby's tuition has been paid for a few months by an anonymous donor.
• Two women I just met this week came to see Ruby and I: one brought a gift and the other brought lunch. 
• Fruits, essentials like paper towels, and other groceries have been left on our porch.
• A woman who works at the hospital spotted Ruby and I frequenting the outdoor fountain daily over the last few months and 'met' us in the hall one day. That led to a homemade hat for all three kids, some meal tickets for the cafeteria, and kind conversation laced with support and offers to help.

There are no words.....seriously. And I'm not listing everything here either...these are just some of the intentional acts of kindness in the last few weeks. I stand amazed every day at the prayers and love surrounding Ruby and our entire family.

Rest When We Need It

Exodus 33:14 My presence will go with you, and I will give you rest.

Such rest. We are only in day two (the second of four chemo bags was just started), but already, this is such a non-event. Ruby is a little tired, and a little more picky about food today, but she is still smiling, playing, eating, and loving like a champ.

Rounds today were simple, as they usually are. Ruby's chemo is a continuous drip for 96-hours, which means she will be done on Sunday afternoon. Her team confirmed today that she can go home then. She will have blood draws at home 2-3 times each week while at home, and when we receive those results, there is always a chance that she needs a transfusion. In that event, she will have to go to the Aflac Clinic for 4-5 hours. And if/when she spikes a fever, she has to go to the clinic or ER immediately for antibiotics. In that case, if her ANC is under 500, she will have to be admitted also. So life may be a bit of another kind of crazy some weeks....I foresee plenty of random afternoons for the older kids, but it still means us all sleeping under the same roof most of the time.

He gives us rest. This stay is still five days. Five days away from the kids and Lehr, five days hooked up to a machine and a pole, five days away from friends and outside and all of the things Ruby loves. But this stay feels like a huge rest because it is only five days. We had two great weeks home, and part of what made that time so relaxing was the lack of anxiety over entering the hospital for another month. Rest for my soul.

(*I did not bring my camera to the hospital for this round....five days hardly warrants a suitcase, let alone a camera. :) So no cute Ruby pictures except from my less-than-worthy phone photos posted on Facebook.)

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.

So What's Up?

So here we are again. Another (almost) diagnosis, but two years more experienced and (hopefully) wiser.

Each year Ruby has a full panel of blood work done. It's one of the many things that is just standard protocol for kids with Down syndrome to help detect anything from celiac disease to ITP (don't even ask me to define it, let alone spell it). After Ruby's tests earlier this summer, one of her nurses called us to schedule a re-test. 

Fast forward to the day of the retest: the nurse came in and told me they needed to run the platelet count again, so she pricked Ruby's finger to draw some blood. Ruby flinched only slightly and then we waited patiently while the blood took a while to pull into the small vile. She put a quick band-aid on Ruby's finger and told me that the test would only take about ten minutes, so she'd be right back with the results. When the nurse walked back in, it was obvious that she never hit it big at Vegas. She quickly told me that our Doctor was not in yet, but that she'd give me a call when she arrived to give me the results. Ruby and I walked out (waving like we were on the red carpet the whole way...they treat her like a celebrity there), and drove to speech therapy.

That drive is about 40 minutes long. Enough time for me to float around in my head a little bit, especially because Ruby was busy reading books. My 'spidey sense', as Lehr calls it, was already honed in on Leukemia. We've had a full CBC and other blood work run twice before for Ruby, but everything has always come back clean. However, one of the things that I've been trained to worry about with Ruby is childhood Leukemia, so pair that with the low platelet count and the wheels were already starting to turn for me. I honestly put it out of my mind during speech; I didn't even bring my phone into the office with me. But when we returned to the car, I was greeted with a voice mail from our pediatrician saying we should expect a call from a hematologist to schedule an appointment.

This is when it became a reality for me. This wasn't my overprotective mind running away with some random symptom....we were going to see a hematologist and oncologist.

The crazy thing is, the very first emotion that washed over me was gratitude. Immense and overwhelming gratitude. For Ruby, for the last two years, for her first steps, for her laugh, for living in Atlanta with doctors that help me remember how to be proactive, for her relationship with her siblings, for her work ethic, for her crooked smile, for the many hours I've been able to spend doing therapy with her, for her joy touching everyone we know. It wasn't a bittersweet gratitude, or a weird preemptive celebration of a life lost....it was pure gratitude just because. I know without a doubt that it was not because I am a strong person or someone who always finds the positive in things either; that was the Holy Spirit in that moment putting blinders on me and pointing me directly at what I should focus on.

There have been tears though, even some within an hour of that reality, but not many. Not nearly as many as I had in the first 48 after Ruby was born. That's another gift Ruby has given me: the ability to process things quickly and get to the 'now what' stage quickly. It's like she has taught us that things are not always as they seem, but even when they get hard (as we know they will), dance your way through it because it's coming regardless.

So where are we now.... We met with the hematologist (two, actually), and they took more blood. Then they ran a quick test AND did a smear to look at some of the actual cells under a microscope. We stayed at the office while they did that, so before we left, they could discuss the results with us. Ruby's platelet count and white blood cell counts were low still, and the doctor did see some concerning things in the actual cells. The next step was to send the blood to another expert to do another smear (that would be the fourth time Ruby's blood was looked at by at least four sets of medical professional eyes within a month). We received those results the next afternoon. The smear did, in fact, show Leukemia cells. Ruby will have a bone marrow biopsy next week to determine the architecture of the cells (?) and to get an official diagnosis and plan for treatment.

Where is the good news?

• Ruby is a rockstar who defies the odds. Duh. 
• She isn't sick at all...this is all coming about because of standard blood tests; she has shown no other symptoms so far. 
• While kids with T21 may be more likely to get leukemia, they also respond very well to treatment.
• The percentage of cells that Ruby has showing the leukemia is low. Not low enough to ignore, but still low.

Finally, the best news of all. God is good. I mean that wholeheartedly. Lehr and I have been very at peace through this whole thing. Even in my moments of weakness, I have never felt despair or like I was alone. My moments of weakness have come from the place of grieving my expectation. A mid-life issue of 'entitlement', if you will. ("But she's supposed to go to preschool this fall and skyrocket to the head of her class", "But I didn't have chemo on my schedule for September". "But this wasn't part of my plan").

God is walking us through this and I know He has great plans for this next stage.We sent this information out to our amazing friends, family, and prayer warriors and Lehr put it best:

We are all in a good place and know a few things. 1) God is good. No resentment, anger, or 'why us' here. 2) Ruby only knows one gear: and that's to kick ass and she plans to keep doing just that. Her words not mine. 

 

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!

World Down Syndrome Day

World Down Syndrome Day was last Saturday, but the after effects are still being felt in our house. We've heard so many stories, seen so many pictures, witnessed so many videos.... I thought the Buddy Walk last year was amazing in the overwhelming support we saw. This topped that. Not because people supported Ruby (even though I realize she is at the center of it for our friends and family), but because people were bringing good awareness to Down syndrome in general.

We asked Team Ruby to celebrate the day of awareness (3.21) by wearing different colored, different patterned socks. The idea behind that is that you wear mismatched socks and someone calls you on it. Then you start a conversation about Down syndrome. However, when the kids and I did this last year and I 'quizzed' Eli on what he would say when people asked about his socks, he responded "I'm wearing different socks because what makes you different makes you beautiful." So we totally embrace that side of it as well.

For those Team Ruby members that have a Ruby is a Gem shirt, or a Buddy Walk shirt, we asked them to wear that as well...another conversation starter. And because 3.21 was on a Saturday this year, we asked ANOTHER favor: wear your stuff on Friday too because you're likely to see more people at school and work.

Team Ruby members started sending in pictures (I got over 20!!) of their shirts and/or mismatched socks before I even left boot camp Friday morning (speaking of which, Team Ruby shirts showed up at camp even though I never mentioned it to my campers). People from several different states took pictures of their socks, their shirts, their kids, themselves...it was awesome! And then we got emails throughout the weekend. Our friends shared the stories of how their conversations went with their kids about why Down syndrome needs awareness, stories of talks about what Down syndrome is (and isn't!), stories of amazing kid responses to WDSD. We got a few videos of friends' kids wearing their socks and telling the camera about it, we got a video of one friend (only 7 years old!) telling his class about Ruby, we got messages describing kids telling their classes about Down syndrome (some from kids/families who have never even met Ruby!).... It has been a very emotional week, to say the least :)
 
Finally, Eli did talk to his class in preparation for Friday (so cool!). That morning I took Ruby in to his class and we took a picture together. It was amazing to see all of those kids wearing red shirts and mismatched socks! When more experienced parents told me Ruby would change the world around her, I knew they were right, but I had no idea her reach would be so big.....