Wednesday, April 20, 2016

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.

Tuesday, April 19, 2016

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?

Wednesday, April 13, 2016

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.

Tuesday, April 05, 2016

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.

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

Bittersweet

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).
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.

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!