Saturday, March 26, 2016

The Perfect Pitch

So we're back in the game, and this is a new league for us. Not only can the kids steal bases (actually, they steal a LOT of bases), but the kids pitch also. It is the first time Eli's been a part of a game that has absolutely no adult participation. There are umps and first base coaches, but no adults on the field directing, or backing up the catcher, or pitching to the batter.

Eli received his first opportunity to pitch this last week. He only ended up pitching one inning in his first game, but it was just enough. He handled himself quite well on the mound, not getting too nervous or inconsistent. His team played great defense and helped him have a very successful inning.
About a week later, Eli got to pitch again. This time he had a bit of a different experience. While he had some good pitches, he struggled with getting the ball over the plate at times. Many of the batters that came up against him received a full count before walking; Eli ended the inning with a very high pitch count.
Here is where my boy is starting to show some maturity. A year or so ago, his frustration over not pitching well would have manifested in a sour attitude and it's not likely he would have been able to have any success at all on the mound. Instead, he kept his composure and got out of the inning calmly and humbly. The first thing he told me was, "Well, that was totally different from the last time I was pitcher." Love that my boy is maybe starting to allow himself to learn when things don't go as expected!

Thursday, March 24, 2016


Romans 5:1-5  Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, 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. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. 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.

Sunday, March 20, 2016

The Jersey

So yesterday's game was a good one for another reason, totally unrelated to Eli. His coach asked me about a week ago if he could get ahold of the file for Ruby's 'logo' to do something with the boys. I obliged and he showed up to the game today with stickers for the boys' helmets.
He talked briefly before handing them out about how we are honoring Wyatt (a boy in the league who is battling cancer) with a patch on their uniforms, and how they have another hero on the team: Eli's sister. The boys all slapped the stickers on their helmets immediately and started trying to give her high-fives. She loved it. The coach and team mom also got Ruby a jersey with her name on it and Eli's number (#1).
The boys called her their cheerleader, their mascot, and their 'bat girl'. She couldn't stop looking at her shirt and pointing to it.

Saturday, March 19, 2016

Grand Slam

Eli has been back in the Fullers Park fields for less than a month, but it feels like we never left (we took an 18month break to try soccer). Eli is really loving baseball, kid pitch, and his team. His coach is great; we were on a team together several seasons ago and we are so glad he grabbed Eli for his team. (He's one of the 'good ones' that understands the importance of building sportsmanship and confidence into the boys.)
This afternoon's game was a good one, with the momentum shifting a few times between the two teams. Eli played on third and in the outfield, making some solid plays. His best play, however, came during his second at-bat. He hit the ball into the outfield and managed to make it around the bases, sliding into home for a homer. But not just any home run: a grand slam! (The bases were loaded when he hit the ball.)
Eli was so excited that he got a home run, but he didn't realize the four runs it earned until he was back in the dugout and his teammates told him.

Eli had success during his other at-bats, as well: Lehr caught his ending triple on video.

Friday, March 18, 2016

The Gym

This morning I did something that I have not been able to do with Ruby since before she started walking. I took her to an open gym at a place where she could run and climb and interact with other kids. The big kids and I took her to Catch Air about two years ago, but that was before she was walking. Then summer came and before I knew it, we hadn't revisited the place.  And then leukemia hit and we were forbidden from going anywhere germs might linger, especially "random" germs (as opposed to those from family she lives with).

Ruby had a mini carnival at her school yesterday, and seeing her try to navigate the bouncy house made me realize that she is so ready to crawl and climb and jump. The PT benefits from bouncy houses and trampolines and other things that require her to test her balance are HUGE, and they are exactly the kinds of things we have always done at the house, but without the added benefit of fun that comes with gym equipment.

So today I took her to Champion Kids, a place the bigger kids took urban gymnastics a few years ago. They have an open gym area for toddlers a few hours each morning. Ruby ran around the place like it was Disney World. She tried everything once and then made her rounds again, not letting anything get in her way. She got in a few kids' faces, saying 'hi' and then kind of swatting their face. (Not sure what is going on with that, but hopefully it is just her re-entry into society.) She climbed and ran and tripped and did anything she could for a full 90 minutes. Next week I am trying out a Mommy and Me gymnastics class with her.
My favorite thing was watching her do everything so independently (she didn't want me to help her with anything except pulling her out of the foam pit, which is pretty hard, even for a typical child). But she DID want me to sit or run and participate with her. She kept patting the ground next to her and saying, "Mama", and she would go to a new apparatus and say, "Peassss" (as in, please come here).

Thursday, March 17, 2016

The Carnival

Ruby's school had a mini-carnival today. When the classes attended their 'movement' session, the gymnasium was set up with different stations for them to play with. There was a small bouncy house with a slide, a plastic slide, a big bowling set, bubble wrap on the ground, some hoops and small footballs, some velcro balls and targets, soccer balls and a goal, basketballs and a hoop, a balance beam or two, and maybe a few other things that Ruby didn't make her way to that I'm forgetting.

Parents were invited, so of course I was there! Three other parents and I were standing in the gym, just to the side of the door when the class arrived. Once the door opened, Ruby was the first one in, eyes locked on the bouncy house and yelling in excitement as she walked as fast as possible towards it. She didn't even slow down once she saw that I was there.

I was so overjoyed to get to spend an hour there, hanging out with her class and seeing her navigate part of her day. Ruby did need help on the bouncy house ladder, but other than that, she navigated everything to the extent she wanted to participate (kicking balls, slides, throwing balls, etc.) I forgot a few times that I should be watching for specific deficits, because she wasn't really showing them to me. She shared with a girl from her class (velcro balls). Then a few minutes later when Ruby walked away, that girl ran after her, trying to share back. My favorite thing was seeing her each time we saw someone else do something (slide down or throw a ball): Ruby clapped for them and said, "Yay!". Her smile was "on" the whole time...she was in hyper drive for stimulation.

So funny that the teachers had prepared us to 'slip out the back' while they applied stamps to the kids' hands so that the kids wouldn't be upset that we were leaving them. Ruby barely noticed I was there, let alone got sad when I 'snuck out'. I think she is more sad when she sees me because it means she has to leave school!

Wednesday, March 16, 2016

The Kids' Table

When Ruby eats at home, we put her in her booster/high chair. She has a tray snapped on in front of her, keeping her safe and secure in the seat. And when we go to a restaurant, she sits in a high chair there too. I've not thought about transitioning to anything else because she's not tall enough anyway.

We have a small outdoor picnic table that the kids used when they were younger. It's become our art table, among other things. With the weather being so nice for the last few weeks, we've been eating outside more, and Ruby has started to sit at that table with the big kids. No straps, no trays. I thought it may be a struggle to keep her there, not wandering around, or that she might fall back because she's used to having something to support her torso. But no...she's doing just fine.

Ruby is loving this new 'grown up' table so much that she totally shocked me last week. We had four other families (and kids) over for dinner. The adults ate at our dininng room talbe in eye shot of the outside area where the kids could eat at the kids table or our bigger outdoor table. A few started wtih Ruby at the kids' picnic table, but one by one they all congregated in the screened in deck. Ruby sat at the table all by herself and ate all of her food (pretty neatly for her) for over 15 minutes.
That girl.

Thursday, March 10, 2016

Come On, Harvest

"Do not be weary in well doing for at the right time, if you do not give up, there will be a harvest."  Galatians 6:9
I should really look back to see how many posts I've started with that verse. I know I start (or end) more days with it than's definitely my go-to, my rally cry, my 'help me sleep at night'.

Apologizing in advance: I'm just in a really crappy place today. I'm there because of Ruby's lack of progress, I'm there because of my lack of ability to teach, I'm there because of the disconnect that seems to be happening between time spent on her speech and the reality of what it is, and what it isn't.

Ruby had two session of speech therapy this week were way less than Ruby's "personal best". Add to that at least one dedicated session with me each day (plus the countless moments throughout the day that we pick a word or sound and work on it in everyday activities). And her tongue is as much an issue now as it was two years ago, despite Lehr and I (and all therapists) working on it in so many ways. It has felt like the blows in this department keep coming. As much as she'll have good days, and good weeks, so many areas seem to be lacking and there just doesn't seem to be a way to move past them.

I know… I know… No. Ruby's a rockstar. She will get there in her own time. I need to stop comparing her to others. Academic evaluations do not define her. I just feel overwhelmed at the moment with how easily and quickly she regresses. She has so many vowel and consonant sounds, and she gives so many word approximations with flashcards and books, but if I do not drill her on each one of her sounds extensively several times a week, she falls into bad habits with them. Bad lip placements, bad tongue placements, bad habits.

Sounds like a no-brainer, right? Just be sure to run through these things every morning after breakfast and we're good to go. But that list of "just run through" is very long and time consuming. And that list grows constantly. We "just run through" so many things every morning (and noon, and night), and that is without going backwards and including everything she has ever learned to make sure they are still in-tact.

Some days I just fall into a vacuum, where I cannot see the big picture, but only the intense amount of work being done, sometimes with little to negative gains. I work on speech with her so, so, so much. But we all know that time spent working on something does not necessarily equal productivity. Days like today, I feel like my work with her is the equivalent me bailing water out of a sinking boat using a bucket full of holes. I'm adding value, and I know what the end result needs to be, but my efforts are not maximizing the potential.

Not giving up. Not throwing in the towel. And never doubting her potential. Just trying to remind myself to not be weary.

Sunday, March 06, 2016

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 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.

Friday, March 04, 2016

Central Line OUT!

I took Ruby in for a small outpatient surgery yesterday morning. (I say small because after the little bit of medical stuff we've been exposed to in the last seven months, this surgery could definitely be classified as small.)

We arrived at 8 for a 10AM slot. Ruby was in good spirits, but around 9AM she started signing and asking me for "more" and "eat". Distractions were my friend until about 9:50 when they came and gave her Versed to make her a little drowsy, and a quick breathing treatment to get her lungs nice and clear before she went under. I put her in the bed to be wheeled back just after 10, and away she went. Maybe 15 minutes later the doctor came out to tell me it was done and went as planned. Thirty minutes later she came wheeling down the hall.

Now most people would be a little groggy after waking up from anesthesia. Ruby's been under close to a dozen times and, while she always comes out easy, she usually takes a few minutes to wake back up and shake the cobwebs out. Not this time. She sat up in her bed as soon as they started and waved to everyone they passed. By the time she got to me she was even smiling and lunged right for me. No 'waking up' needed.

That girl.

Stitches were not needed; Ruby just has a bandage over the site which we can take off tomorrow morning. The spot will scab up and that is it. No more central line.
It's a crazy bittersweet thing. As absolutely ecstatic that we are that her 'tubes' (as we called them) are gone, I can't really hate them. As stressful as it was to keep wrapped up behind her so she didn't mess with them, as tedious as it was to always remember which days to flush, when the last time we changed caps, how long it had been since we changed the dressing, that line brought life saving medicine to her. It was hard to watch the nurses suit up in Haz-Mat gear to administer the toxins into her bag, it was surreal to have to glove up whenever we changed her diaper and throw them away in a yellow "POISON" bag, but it's what cleaned her body of the cancer.

But now we will move onto life without the 'tubes'. A life that includes things like baths, water tables, and swimming. A life that allows me to no longer have Ruby wear one-piece clothing every second she is not in my presence, whether that is while she naps or sleeps or while she's at school or church. A kind of 'carefree' life, if you well.

Thursday, March 03, 2016

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 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'.

Wednesday, March 02, 2016

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.