Needed Time Away

To say our extended beach weekend was a welcomed change of pace would be a huge understatement. It was much, much needed time.

Time away from running from one therapy to another. Time away from driving frantically between doctor's office waiting rooms. Time away from worrying that Ruby is not meeting milestones fast enough. Time away from trying to wrap our heads around what her IEP notes really mean about the school system and her ability to succeed there. Time away from over analyzing evaluation reports. Time away from watching her with kids her age and unintentionally comparing her, and mindfully taking note of the areas she falls short. Time away from the daily catch-up game.

It was perfectly timed, perfectly given time away from all of that.

It was also much needed time watching Ruby be Ruby. Time watching everyone, EVERYONE, dote on her. Time watching her figure everything out on her own. Time watching her be fiercely independent because she CAN do it (anything and everything) by herself. Time watching person after person do a double take when they see her (not because of her Down syndrome or chemo hair, but because of Ruby), followed by a huge smile as they make eye contact and sincerely tell me, "She's adorable!" or "She's beautiful!" Time watching her play so well on the beach with anyone who occupied her space. Time watching her eat ice cream and watch outdoor movies in an environment that didn't magnify anything 'atypical' about her. Time watching her take in the sand, the wind, the waves, the sun, the noise...all in stride and with joy. Time watching her play on the green each night with kids of all ages, running around and doing somersaults on the grass as the sun went down. Time watching her in all of her glory without asterisk or exception.

It was perfectly timed, perfectly given time watching all of that.

IEP

We had our first IEP (Individualized Education Plan) for Ruby today. It's been a season leading up to this, full of evaluations by the county, transfer of services from the county through Babies Can't Wait to the school system, etc. Today's meeting was planned to do two things: determine eligibility and make a plan (an IEP) for the service(s) for which she is eligible to receive.

When Ruby had her evaluation about a month ago, I knew she did well. The evaluation occurred at 9AM, which is a great time for most kids because they are well rested and ready to go, and it took place in a new environment with new toys. Pretty much the perfect scenario to get the best possible results from my girl. So when I got her report last week, it didn't shock me to see high marks on there. I didn't expect them to be as high as they were, but I also don't really know anything about this process since we are just starting out.

The meeting today started out with determining eligibility. There are several types of services available to kids: special needs preschool, individual or group speech therapy, and community based support were the three we were anticipating. I thought we might have to negotiate how much special needs preschool Ruby would attend next year given our push for her to be involved in her typical preschool classroom three days/week. However, as they interpreted her scores for us, it became evident that she scored *too* high for most of the services. She did not qualify for PT, as we expected. She did not qualify for OT, which we knew was a possibility. (I asked several times if she would be able to qualify next year, even if she didn't this year and the answer was 'yes'. I fully expect that her delay will be more evident next year.) The only area she qualified for was speech, and that is only for small group speech therapy, not the full-on preschool. (That also means she cannot receive the community based support, which allows someone to come to her typical preschool and observe/help/support from time to time.)

Here's the thing: Ruby's scores fell in a small little gray area between the 'norm' and qualifying. That sounds like great news because we didn't know she was capable of performing at that level. However, if what you want is to receive those services, this is bad news. (Especially since a blood test on Ruby should be enough to qualify her based on her extra chromosome. Her delays will not be remedied with a little therapy or time to 'catch up'.) Her scores only qualify her for 1 hour of speech each week. Sounds crazy to anyone walking this road with us.

I am choosing joy in this moment. I am choosing to see this as a reflection of Ruby's potential. I am choosing to see this as the result of her hours and hours of hard work. I am choosing to see this as a byproduct of Ruby's motivation and desire to learn.

I went into this meeting prepared to fight for my girl. To fight for inclusion. To fight for her to be able to maintain as much exposure to typical peers as possible. Instead I got to hold on to my fight for another day. Should we see that she's not benefiting from the current plan (which doesn't start until the fall), we will call a meeting to reassess. Should we see that she needs more (OT, behavioral) therapy and we think the school can be a viable resource, we will call a meeting to reassess. Should we see that this particular speech therapy is really helping and she needs MORE, we will call a meeting to reassess. It just didn't seem to be the right move to fight hard for more services (that we really weren't sure about anyway) before we'd had a chance to test drive them to see if they were worth fighting for.

Sportsmanship

Eli.

That boy.

I love him with ever fiber of my being. And I know who is he. And who he is not.

Eli is a sports enthusiast. Give him a ball and a game and he will spend his day playing and practicing. Especially when it comes to baseball. We gave him a tee when he turned two, and he went to his first baseball evaluation the week he turned four. And even in those early EARLY baseball years, he would last through a 45 minute pre-game practice, an hour+ game, and still come home and want to go outside to hit and throw. His love for baseball has never been questioned.

But Eli is not the kid who will be team captain. His gift is not building other players up. His gift is not congratulating the other team, regardless of the outcome. And while Lehr and I struggle with that and try to 'grow' him in that area, it's just not his forte.

Today Eli was recognized by his team for a sportsmanship award. Each team in the league votes for a member of their team to receive this award (the players, not the coaches). We had some heads' up that Eli would be the recipient because a few of his teammates insisted he would win as we gathered for the practice following the vote. On the drive home that night, Eli and I talked about that and we had one of our most mature conversations to date.

Eli said he couldn't understand why the kids voted for him and thought he would receive enough votes for it. We discussed how many times, something that requires a 'vote' during your youth ends up being less about the actual award and more about people wanting to recognize you in general, so he should take it as a compliment that his team likes him enough to vote for him. He told me that he understood that, but he wasn't the greatest sportsman.

And I agreed.

I was completely honest with him and told him that while he is a very driven and motivated player who loves the game, he is more of the silent cheerer. And he is not always positive when things don't go the way he hoped on the field. Then I pointed to two other boys on the team who showed the 'sportsman' qualities 100% of the time. Eli agreed. He thought they should be voted in, not him. He said, "Not to put myself down, but they are WAY better at cheering on other people than I am." I wish I had recorded the conversation somehow, because it went on and on and was full of little gems.

It was a really cool conversation that showed some self-awareness that I didn't think was present. And there was an attitude of humility in our ten minute drive home that I have almost never seen with Eli. Big time maturity...made mama proud.

And on another positive note, throughout the game that immediately followed the recognition, I heard Eli speak up more in the dugout than I've ever heard him before. Oh so good....

Sick

Oye...It's crazy. Ruby has been consistently sicker this week than when she was going through chemo. How is that possible? (Actually, parents of kids who have fought cancer would not be surprised.)

Ruby has been on and off congested a lot this spring, due to pollen/allergies. At one point they worried she would develop an ear infection, so they gave her antibiotics (April). This week, she ran two random fevers that went away with one dose of Tylenol, not to return until the following day at fever o'clock (that's 5PM). After two days in a row of that, coupled with her sleeping in (unlike Ruby), I took her to her pediatrician's office Thursday morning. They confirmed that her lungs sounded fine, and her ears were clear, but with the blood tinged nose-mucus and puffy eyes, they suspected a sinus infection.

So now she's been on an antibiotic for exactly 48 hours, but it's not helping yet. Poor girl had a fever again Thursday night that took a long time to break, and she had the crazy chills/shivers at one point. Friday morning she slept in (again..third day in a row), and her poor eyes were puffy from tearing up all night. The good news is, they aren't pink-eye looking (infected), and she doesn't appear to be getting worse.

I did call the pediatrician again yesterday to inquire if we should come back in. They assured me that she needed a few days of antibiotics under her belt to see an improvement. If she is still not turning around by Monday, come in. Her energy is down, but she has spurts through the day where she acts fine, plays like her usual self, and (until yesterday around noon), ate at least as well as usual.

This feels all kinds of crazy...Ruby's already been sick a few times since her short time of being in remission. Her immune system numbers have always registered in the 'good' range since we were released, but during this allergy season, she's had to be on an antibiotic twice. My NOT-medically-educated self tells me that the overload of mucus from pollen season is overloading her system with yuck, helping things to develop into infections. That doesn't help us as we watch our poor girl with puffy eyes so miserable. And here's the thing, even though she sailed through chemo, and even though she is amazingly strong, what she's been through has messed  with her immune system and it's ability to react efficiently and 'normally'. So for our girl, I guess it's still not over.

Ruby Updates

Speech Therapy
Ruby is doing better in speech therapy. She is performing the 'tongue to the top of her mouth' task we ask her to more consistently. (Not to be confused with the 'tongue behind the teeth' task we are really after.) She still isn't able to keep it up there when she makes the 't' sound though, and we've been banging our heads against the wall working on that for over a month. Thankfully, her myofunctional specialist gave us a new assignment this week: L. So instead of the 't' sound, we are working on the 'l' sound. Much better because Ruby is able to make that sound with her tongue securely in her mouth. We are hoping to hit the 'l' hard and eventually transition it to the 't' through words that contain both (lot, light, etc.)

Ruby really does know her colors, but if you hit her when she's not in the mood, she will not demonstrate that skill for you. It has happened on more than one occasion when she and I have been in an evaluation, or with a teacher or therapist and they have asked her to point to or pick up the item of a certain color, and Ruby will not correctly comply. However, I bought a new therapy tool game for the two of us to work on this week and on her first try, she nailed it. Not just with two basic colors, but with six colors: red, blue, orange, purple, yellow, and green. And then she totally matched colors, and even shades of color within the game. Smart cookie.

I realized the other day just how many letters Ruby does recognize. While sitting on the potty for no real reason hanging out, I pulled out a handful of random foam letters and tested her. She's on it.


Occupational Therapy
I picked up small tongs this week for Ruby to work with in an effort to improve her fine motor skills. I would still like to see her use her pincer more often than not (she still 'rakes' to pick up cheerios or nuts on her high chair tray when she gets tired). I picked up a pack of cotton puffs for her to practice picking up; she's a pro. I need to find something harder for her to pick up, I guess.

Physical Therapy
We don't ask Ruby's PT to come by very often anymore. Ruby still has some delays in that area, but much less than any other, so it's not our first priority right now. Ruby is close to running (coming down the driveway or our street, gravity helps her and she gets some serious 'run stride' going). She isn't jumping yet, but we are working on a few strategies to try and encourage that.

She loves the stairs. Ruby will NOT let anyone help her with stairs unless she is certain she can't do it herself. This adds much time to my day, but it is worth it to see her trying to be so independent. Her other favorite thing to do is ride one of her bikes down the driveway. As soon as the garage door opens each day, Ruby hustles over to a bike and pulls it outside. She rolls/drags it to whatever height on the driveway she desires and then sits down. Most of the time she needs to use her legs to propel herself forward. This helps her strengthen her hamstrings, so I love it.

You know what else I love? How 'typical' she looks when she's motoring around so fearlessly on those bikes.

Date Night

It's crazy for me to think that we seemed to be more consistent with individual date nights with the kids while Ruby was in the hospital. Nothing like no extra time on your hands to make you more intentional!

Last week Maddux and I grabbed dinner one night, just the two of us. As usual, it was awesome because my girl talked and talked and talked. While I find my dates with Eli allow more conversation where I end up pouring into him (not sure how much he hears) without interruptions, with Maddux it is almost entirely the opposite. If you let that girl go, she will tell you anything and everything.

And I love it.

During this date night some of the random topics that came up were:

• Dating (She said, "No till I'm 18, mom. Cuz dating is to get married and even 18 is too young for that.)
• Kissing ("If I do that when I'm in middle school, then I won't have saved my kisses for 'the one'.")
• Boys as friends and how dating can mess that up ("I don't understand why girls try to hug boys when they catch them during 'tag'...")
• Maddux told me about a friend whose sister had a baby at 19 ("That must be hard because you're not even old enough to be a mommy yet and you probably don't have a husband when you're 19.") She then filled me in on how Mary was only 12 when she had Jesus and 'That's Crazy!'.

It's amazing what she'll share with me when I just sit back and let her without trying to control things. It's also so so so cool to me that she has heard some of the things I've tried to pour into her about boys and dating and marriage and purity. That was the biggest shocker for me that night: the things she told me without any prompting at all.

Delight

Take delight in the Lord and He will give you the desires of your heart.  Psalm 37:4

I've never hidden the fact that while I love the life I'm in, it is not without struggles. Mainly struggles within me: my mind and heart. I very easily can slip into a worrisome place, especially when it comes to Ruby and her future. How odd that is because when I reflect on her past, she has done nothing but beat odds and overcome obstacles. Yet I still worry that she'll run out of steam when it comes to kicking @$$ one day. (Idiot!)

All of that worry gets in the way of me experiencing joy with Ruby. The good news is, I do force myself out of the therapy and work and fear often to still *see* her and take joy in who she is. But it would be nice for that to just happen without me having to be so intentional about shutting off the main part of my current persona.

One of my main grievings is for a 'simple' toddler/babyhood for Ruby. One where I don't have to measure her or keep track of milestones like it's my job. That constant "what's next" approach steals some of the joy out of this precious, short time when she is so little.

So I find myself in the middle of a week that should have me very stressed out. A week that includes typical therapies, a parent-teacher conference for Ruby (where lack of achievement is up for discussion), a whole morning of subbing in Ruby's class (and likely seeing the gap between her and other kids), and a County Services evaluation where they work with Ruby for a few hours to see how much (not "if") she needs help in going forward.

Sounds like a recipe for disaster in my over thinking head. But God has so given me the desires of my heart. He has given me what I want most for myself as Ruby's mom: delight in Ruby without anything else attached. I know I will mess it up and it won't last, but this week, I have been able to sit back and delight.

We still have one of the things on our to-do list ahead of us, but so far this week, I have been covered with a pleasant calm during conferences and therapies and evaluations. I've seen her sitting quietly and patiently through most of the conference in her classroom. I've heard her teachers list the many ways she is working at the same level as other kids in the class. I've heard therapists and developmentalists squeal with delight over Ruby and her willingness to do what they ask during her evaluation. I hear her chatter non-stop while they work with her, her sweet voice such a great background noise to my simultaneous interview with another therapist.

And through it all, I honestly didn't pull out that measuring stick. I didn't feel "she's doing well for her". I didn't feel the need to qualify to myself any of the good stuff that is happening with Ruby.

So when I think about the verse above, I think it means that if we delight in God, we can delight in what He's given us, and we can find peace and fulfillment. In a week that could have provided anything but, I am finding much peace.

Burn Like A Star

 "Burn like a star, Light a fire in our hearts" - Rend Collective

Ruby burns like a star. And how... She is the fire in our hearts.

Not just because she is the star in my tattoo, not just because she is a rockstar, but because she is constantly shining in the darkness around her as a pure light.

I love this song (Burn Like A Star), and it makes me think of Ruby every time. This week especially, she is shining like the star she is. My one-on-one speech time with her has been fairly productive in the last week, and I'm hearing words randomly more and more. Not always in the right order (tonight she said, "bye-bye, ook, mama, bye" as she waved to her "Llama Llama" book on the dresser after we read it"), and not always with full articulation ("ook" for book, "nana" for banana, "een" for green), but it's coming.

Today was her first parent-teacher conference. We requested an 'assessment' from her teachers a few weeks back in preparation for her Cobb County evaluation (which will lead to an IEP for her in a Special Needs Pre-K in the fall). The areas where Ruby was not performing as well as we would like were absolutely expected (speaking-related tasks). What wasn't expected was how well she performs for them with so many of the other 'typical' 2 year old areas. It would be easy to look at her assessment form, full of checks in all three levels of success (ranging from not successful to successful), and get down about it, but honestly, I'm super excited that there are plenty of successful checks!

Tomorrow Ruby will be evaluated by therapists and educators for a few hours while they take copious notes regarding her levels of speech, physical abilities, fine motor skills, etc. A report with their 'findings' will follow that, and we will have an IEP meeting scheduled. At this meeting, the types of services and frequency will be discussed and decided. There is much anxiety around this process, but at the moment I am pretty calm about it. Right now there is nothing I can do (nor do I know what i should/could do) regarding tomorrow's evaluation, so I'm just planning on a morning of seeing what Ruby has up her sleeve. If she's a rockstar (duh), then yay. If she's not giving them her full focus, then she qualifies for more. Sounds like a win-win?

Torn

We have just been through a very full season. Full of medical concerns, full of prayer, full of uncertainty, full of full schedules. One of the many things this full season did not allow for was the amount of time and energy Lehr and I expected to spend on making a decision about Eli's middle school destination.

A little background... Lehr and I are facing decisions that all but didn't exist when we were in school. Where we went to the school we were zoned for, as did all of our neighbors and classmates, Eli's neighborhood friends have been moving to different middle school districts since he was in second grade. And of those that are still here, there is a choice to be made between public and private. Add to that this fun detail: his fifth grade class is zoned for two different middle schools, with him on the 15ish% side. (And of that small percentage zoned for 'our' public middle school, we'll be lucky to get a handful that actually attend.)

This has been heavy on our hearts for several years. As products of a public middle school, and one far less capable than what we are zoned for, we have always been confused by the whole situation. And we feel so strongly about pouring into the community you live in. "Entering into each others' mess", some might say. How can we expect our local school to thrive if we take our resources (very actively involved parents and families) to other schools, private or public? This would be a great opportunity for us to enter into an environment more realistic of our city, our country, and invest ourselves, be the hands and feet of Jesus, learn about other cultures, benefit from a different, but equally as important, kind of inclusion than we think about in regards to Ruby.

We talked to parents of kids at a few of the local public schools, we talked to parents of kids at some private schools, we have prayed and prayed and prayed and prayed. And I spent hours talking to and emailing with moms on the front lines at several different schools (private and public). Then we reached out to as many individual parents as we could of kids Eli knew well that qualified for that small little percentage of possible future classmates. Still we were hopeful that we could be part of the 'change' in our area; we were hopeful that we could rally with some other families we were building relationships with through the elementary years to enter these tough preteen/teen years with a strong group of parents working together to navigate the scariness of the middle years.

Unfortunately each school year, each month, unfolded families moving in the opposite direction. By the time we entered this fall of craziness for us, we were at odds about what to do because we could count on one hand the families we know who might attend the public school with us. Then there was (is!) the issues we are struggling with as far as Eli is concerned: trust, humility, character. Our concerns were growing over his ability to grow in his faith during middle school in an environment where everything including the kids are new. It's hard enough to start at a new school with new teachers and new freedoms and new responsibilities, but then to have no comfort zone of a few familiar faces... We have always believed that there is strength in numbers when developing faith, and being around those who share in your faith and values can help strengthen yours so that you can help others find their way.

This fall got crazy: there was no time for school tours or appointments with teachers or meetings with principals. Instead, we were able to get in one tour at our public middle school and one tour at a local private christian school. So so much good at both schools. The public school is rich in music and diversity and sports and STEM. And I've talked to so many moms of current middle schoolers there that rave about the teachers, especially the sixth grade team, that have such a heart for their students. And then you have the private school which can offer faith woven through all disciplines and some familiar families for Eli and I each day.

Prayer. So much more prayer. This fall definitely offered more opportunities for that. After Ruby fell asleep in the hospital, many a night was spent researching and emailing and praying about what the 'right' thing to do would be for our family. How do you choose between two great schools that both have so much to offer? How spoiled are we by this choice?! On one hand, how do we send him into a 'bubble' where he may be too shielded from the real world? And on the other, how do we let him walk into a school where he knows less than five people (and we only know one or two families), at a time in his life when his new friendships don't involve Lehr or I at all? Unfortunately we are beyond the stage of play dates including a parent...

So now we've made our decision, but the internal struggle is not gone. We have championed so hard for the public middle school. We have spoken at great lengths about the benefits of bringing strong, eager, willing families there. We've shouted from the rooftops why we should support this school that has so much more to offer than the test scores so many cannot look past. And now I have to answer to those who will feel, as I have in the past, confused and maybe hurt by our decision to not choose our specific public middle school.

I stand by what our choice is in regards to Eli, because while the public school is amazing and we are missing out on some great things by not attending (this year), I think he needs some strong accountability when it comes to some new middle school freedoms. And I think he needs a little longer to gain confidence enough in his faith to be able to defend it to others when it is tested. As a mama bear, I think I need the safety net of a year or so of people around Eli during his day pointing him to Jesus, amidst all of the hormones and middle-ness.

Our choice is absolutely not a vote against our public school; I am incredibly hopeful that with the few other bleeding hearts that I met along the way and a new school building on the way, that by the time Maddux starts middle school, we will have a foundation of families around us, doing life with us AND attending with us. Our current choice is to allow Eli a few years of safety net to get stronger to swim in what the world has for him. We want him to be able to point others to Jesus; that was one of our 'pros' in him attending a diverse school where he may encounter kids who don't know about God's great love. Hopefully with a little more daily guidance (from someone other than Mom and Dad), he can strengthen his confidence in that area. How great would it be for him to be able to not only defend his faith to a new friend in a few years, but maybe even help them to accept Jesus.

If You Don't Have Anything Nice To Say, Don't Say Anything At All

'nuff said.

But it's me, so I couldn't possibly stop there.

I've been pretty light on the blogging lately. Part of that is due to being home and being B.U.S.Y. with 'normal' stuff like school and sports and middle school decisions and routine doctors' appointments. That stuff takes a lot of time and energy, especially with three kids all moving in three very different directions. But what zaps of my time and energy these days is worry. And scrutiny. And fear.

Philippians 4:6  Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving present your requests to God.

Struggling, really struggling, with the concept of worrying right now. Ruby's therapy sessions are not offering as many hopeful moments as I would like. Or as many lights at the end of the tunnel as they once did. Instead they are full of disinterest, impatience and uncontrollable impulses. One therapist has been having us work on a mouth/tongue skill with her for a month now. These sessions are wrought with frustration for the therapist.

And this mama.

I can usually get Ruby to perform the 'trick' she is being asked to do, but the therapist cannot. (Cue more frustration.) Our time together is spent mostly in a stalemate. And my therapy work at home with her is not met with as much focus as she used to give me, which can be attributed to anything (especially being two years old), but that means the work accomplished and skills displayed are significantly diminished. 

Speaking of that 'being two' thing... Ruby is very stubborn and will not give up on something, regardless of how many 'no' responses she gets to it. Time outs do not work so far, as she thinks sitting on her designated step is a game (even though the kids routinely get sent there for time out too, and she's seen it modeled correctly). Redirection is my best bet, but even that depends on her desire to be redirected.

This means that everyday tasks like cleaning up after breakfast or making dinner are stretched out infinitely because every minute I'm having to check around the corner on Ruby's activity or stop her from doing something she's not allowed to do (like turn on the microwave, or empty the cabinets). Yes, I show her where to play. Yes, I give her QT before and after so she *should* be fine to self entertain. My next step is likely a pack-n-play to contain her. I don't like that. I know that shouldn't bother me, but it does. She's almost three...we should not be moving backwards with her following simple directions, and she *should* be able to grasp at least a few of our household rules by now (i.e. no touching the microwave or emptying out the cabinets).

Ruby's interaction with other kids is yet another thing that causes my shoulders to stiffen up. This week alone has found us in three situations where she was having 'open play' with kids around her age. I feel like I have to follow her around like a helicopter parent to ensure the safety of others. Ugh. That's an ugly sentence. She wants to interact. She wants to engage. So she will: she'll say 'hi', and usually give a hug. But sometimes that hug turns into a take down. Other times it is followed by her waving 'hi' again, but this time with her fingers actually touching the other child's face. And when it gets even better, she ends up pushing them. For no reason at all.

These interactions, these stagnations in therapy progress, these everythings make me scrutinize...everything. That's not fair to Ruby and it's not fair to me, but I still do it. I read too deeply into Ruby's performance in a round of color matching. I think too long and hard about what it means that Ruby can't stop touching the washing machine buttons. I look too closely at Ruby's part in a social setting.

As this swirls around my head, we're in the midst of transitioning out of Babies Can't Wait (state services from birth-three years old). Next year she will likely go to a special needs preschool for two days a week. I'm certain the county will push for her to attend more based on their evaluation of her, but we want her to attend her typical preschool three days a week to continue the benefits of full inclusion. But how can I expect that she will be a contributing member in her typical classroom next year if she isn't able to communicate basic needs to her teachers and peers? I know there are plenty of kids who are not big talkers, and many that do not engage nearly as much as Ruby. But that's where the balancing act lies...she wants to be involved in everything, so often there is taking of toys, or pushing out of the way in place of words she has in her head but not on her lips.

Then, because once I get into this dark space, I'm unable to find my foundation for what I believe is right or working with Ruby in regards to everything, I second guess it all. Then I worry that I'm not giving her enough time to just be a kid without me interfering. Then I worry that I'm not allowing speech and OT things to just happen naturally (which is really not an option, as those of us working through some of these challenges with Down syndrome know). Then I worry that I'm mistaking my worrying and planning for things to do with actual time working with Ruby and maybe I've got it all wrong and I need to be doing even more.

My opinion remains that she has so much to say, even though she has such limited speech. She's like this sunflower, not yet opened, but containing amazing color and size. But how will anyone know what is inside of her if she remains closed?

And that's where the fear creeps in. The fear that Ruby is not capable of as much as I think she is. The fear that her potential is being met; we are seeing it's entirety in her few jumbled words that are incomprehensible by most people. Enter the fear that inside of this closed flower are only a few petals.

You can see how quickly this spins out of control. You can see why it's not always a good idea to walk through the mansion of my mind. You can see why I sometimes opt to not say anything at all.

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!

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.

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).

Amazing.

The boys called her their cheerleader, their mascot, and their 'bat girl'. She couldn't stop looking at her shirt and pointing to it.

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.

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).

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!

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.

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 not....it'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.

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.

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.

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.