Thursday, December 29, 2016

Way Out West

For the first time since either Maddux or Ruby has been alive, we were not home for Christmas this year. We (read: I) tend to hold on to that day as a sacred, at home, our traditions day, which doesn't blend well with travel by planes, trains or automobiles. This year, however, Lehr suggested we go, and go we did.
For ten days we invaded the space at Grandma Cathie and Grandpa Jim's townhouse, leaving traces of us in every corner imaginable. We ate all of their food, slept in all of their bedrooms and offices, and filled every waking second with noise. They claim they loved it.

Eli, Maddux and Ruby were overjoyed to see the snow immediately upon landing. Not only was it on the ground, but it was on the rooftops, the cars, the lake...everything. And it snowed at least half of the days we were there, adding to the already impressive base.
We took advantage of that by making several outings to sled, including two trips to the same hill my brother and I spent our childhood climbing up and sledding down.
My parents live on the river in a very walkable area, so we walked through the snow to the 'beach' or through the neighborhood pretty much every day. Ruby preferred to be pulled by sled, but she did plenty of walking too.
One day my brother's kids came over to hang out with us all day, and then the big kids went home to his house for a movie, pizza and a sleepover.
The next day we met them just after lunch for ice skating. Ruby sat that activity out, but she followed us on the perimeter of the rink on dry ground.
The biggest event was probably skiing. Eli and Maddux have skied a few times before in North Carolina, but nothing as big as what we took them to. The first day out, we all went and pledged to work with Ruby as long as she'd let us. My parents came along to watch and to provide a ride home for Ruby when she tired of the snow. That girl was amazing! She could not stand up in the boots and/or skis very well, but she had a blast when Lehr held her under her arms so she could coast down the hill. She did NOT want to stop!
Just before lunchtime, we loaded her up on the gondola with Grandma and Grandpa and she immediately fell asleep. Eli and Maddux stayed with Lehr and I and finished out a great day of skiing. The day after Chrsitmas, Lehr and the big kids returned and knocked out another full day on the mountain.
The day before we left we drove up the coast a little to an area that was known for it's bald eagle sightings. We were amazed at the amount of birds we saw! They were perched everywhere, as well as flying overhead. It was definitely not something you see every day!
It was so great to spend time with everyone; we do not get to see my brother's family often at all. Ruby especially enjoyed meeting her youngest male cousin, Boden. She is still wandering around the house saying, "Bodie!" like she did while we were there. Hopefully we can do it again before another ten years passes!

Thursday, December 15, 2016

The Aftermath

In the hours after the IEP, I was at peace. I felt good, very hopeful even, about this new venture. Today the reality sunk in a little more as I've had to deal with the effect of this new plan on Ruby's current schedule.

We went to one of her three speech therapists this morning and had to reschedule our upcoming visits. Not a huge deal, but it will make Mondays extra long for my girl. Then we had to go to Mt. Zion to break the news that tomorrow will be Ruby's last day for this school year. The director is and was amazing; she's seen us go through so many changes to schedule in the last two years and she's always walked with us, which is huge. But that didn't make it easier for me...felt like we were breaking up with them a little bit, even though we know we'll be back in the fall. And now I need to try to figure out a way to keep Ruby in some type of gymnastics program to continue building her core muscles for PT purposes. Not a big problem, just another logistical puzzle to solve.

I still feel good about our plan. I still feel like the meeting was a peaceful one where God clearly showed Lehr and I the way. But I am in a weird place...kind of mourning the plan we had, kind of anxious about what January holds for Ruby, kind of cautiously optimistic about our goals...searching for the light to lead our way.
Leaning on this verse:
James 1: 2-4   Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.

Wednesday, December 14, 2016


We had Ruby's IEP redetermination today. It was a long meeting, first reviewing the findings of all of the tests and evaluations, then determining eligibility, finally setting IEP goals for what Ruby qualified for.

Lehr and I attended, along with Ruby's speech therapist through the school, the Occupational Therapist that evaluated her, the school psychologist that evaluated and observed her, the Special Needs Pre-K teacher, and the community based facilitator. Ruby was along for the ride, eating a snack and playing in the Pre-K room the whole time. (I was surprised with how well she sat for most of the meeting!)
There were no surprises in the findings for us; they agreed that Ruby qualified for Special Needs Pre-K and speech and OT. When it came time to set the goals, things turned slightly. Not from what we expected as much as what we agreed to. For most of the time leading up to the meeting, we have been so solid on maintaining what we've set up for Ruby in the way of inclusion in the typical (private) preschool. That is and always has been our goal. But I felt a very clear vision was cast in that room that demanded a different path to that goal. The team wanted several goals for Ruby, which lined up very well with the ones I had prepared in the past few months. In order to reach those goals, they asked for Ruby to receive speech one hour/week and OT 30 minutes/week. The OT stated that Ruby's scores did not qualify her for that much speech, but she wanted her to receive that support to boost her abilities in the classroom without support. When it came to determining how Ruby's Special Needs Pre-K schedule would look, they suggested 5 days/week.

Yup. Big change.

That is not at all what I ever said I would do. It's not what I planned on. But this team set goals that I think will help Ruby get to full inclusion. Four of the members of this team have met with me and talked to me about my vision for Ruby. Four of the members of this team have observed and/or worked with Ruby already and know her strengths and weaknesses. One of the members knows the private school she's attending, and has worked with her teachers specifically. They are not basing their suggested plan on results from a one-day evaluation.

We want Ruby to be in the 3-year old class at Mt. Zion next year. In order for that to happen, she needs to be potty trained. It is embarrassing for me to admit that I have not been able to succeed in that venture, despite working since this summer. I am aware that Ruby's current schedule of Mt. Zion and speech and gymnastics and more speech does not allow for much consistency in the way of training, so this 5 days/week in an environment that supports that goal will help. Also, for Ruby to be successful in a typical preschool with other verbal kids, she needs to have more practice with attending to tasks and sit-down time for longer periods of time. She needs more practice with using her words to get her needs met. She needs more practice with fine motor skills regarding writing and scissors in a classroom setting (not just at home). The realization I came to in that meeting is that we can either address those goals for the rest of this year, or struggle through this same process next year.
I know there are no guarantees. And I know that some (maybe all) of these things are possible struggles for Ruby next year and years to come. But we've been working on them with our current strategy since June with progress, but not success. I think we owe it to Ruby to try a new strategy for this semester to see if it speeds the progress. It is not our intention to hold her back in anyway with this new plan; we see it as equipping her with an extra boost to return to Mt. Zion next year, better than ever.

Saturday, December 10, 2016

The Build-Up

I have not been blogging as much the last few months. Life is busy, as it is for everyone. In addition to our regular 'busy', my downtime has been a bit consumed in praying, researching, planning, preparing, reading...all things associated with Ruby and what her schooling and therapy should look like right now. Specifically, when it comes to public services.

So we've been weighing the pros and cons of her speech therapy, of her extracurricular (gymnastics, soccer, etc.), of her private 'typical' preschool class, of her other speech therapist (who has also been acting as a facilitator on occasion in her typical class), so on and so on. When we started the process of Ruby's public school experience, she was not found to qualify for anything more than one hour of group speech therapy each week. We didn't agree with that (as we knew the reasons why Ruby scored so high were not a realistic picture of what her school experience would be), but recognized that the team that would ultimately work with Ruby, the team that was making these decisions, had never met Ruby - they had only seen the evaluation results from another team. So we agreed to give them some time (six weeks) once Ruby started services (speech) in the fall to collect the data they needed and then we would call for another IEP.
This process has taken a long time. That's a painfully long time for those of us that are impatient, especially when it feels like we've been waiting since May. In reality, we called for the IEP redetermination at the beginning of October, over two months ago. We met a few weeks later to discuss the path to get there, had a few new evaluations of Ruby (psychological and OT, and a new speech, based on her current level), had 2 or 3 observations taken of her in her private Preschool class, filled out more paperwork and online questionnaires about Ruby's levels, abilities, etc., had her teachers fill out more paperwork. All of that will culminate in a meeting for IEP qualification and redetermination this week.

It feels like we've been studying for finals all semester, but without a real clear picture of what subjects will be covered. Even though we received some of the reports from the evaluations, the interpretation of them from the team may differ significantly from ours. It did last May; Lehr and I did not expect to be denied services at that time, even based on her star-student evaluation. I don't feel this is an act of deception by the team, it's just the reality that Lehr and I are inexperienced in these types of meetings, so we don't know what to expect. Friends that have gone before us have mixed results, causing some cause for cynicism, but we are hopeful.
At this time, we are praying for a clear answer of what will best benefit Ruby. We think that is her private Pre-K with a facilitator 3 hours/week, in addition to speech once/week and OT once/week. Whether or not she attends special needs Pre-K also is something we go back and forth on; we are open to hearing the team's thoughts on how that works into our plan for Ruby's full inclusion for Kindergarten in a few years.

Wednesday, November 30, 2016


This girl.
Her brain is always working. Constantly taking in her surroundings and applying her skills, her knowledge, her experiences. I can see it in everything she does: every moment of play AND disobedience.
At the root of Ruby is such an intricate reminds me of her sister. When Maddux was little (and still!) she would say the most random things and they would often come out of left field, indicating she was thinking great amounts of things in her momentary silence. Ruby does the same thing, even though she doesn't have all of the words yet. She will sit down to eat with me and 'talk' as she acts out something she's remembering from our last meal together, or something she saw on our errands. Ruby will remember something specific about every place we visit, every person we meet, and she'll repeat or point out that something every time she's there, or mimic it when she sees that person again.

Here are a few examples of her inner clockwork:
  • When I do flashcards with her, not only does she tell me what the word is most of the time, she hops out of her chair to go find or point it out to me in the house too.
  • Every time we pull into the neighborhood, EVERY time, Ruby says, 'hooohhm'. 
  • When we tried on our snow gear this year, the kids put a pair of ski goggles on Ruby. They told her they were goggles, so she immediately lay down on the floor and pretended to swim.
  • She will tell me ("sahhhh") if she sees someone (in person or in a book) that is sad, and she'll make a sad face.
  • While Ruby was in chemo, there were occasional eye drops we had to administer. I would lie Ruby on the floor and 'hold' her arms by her side with my knees, though she didn't mind too much. The other day I had to give her some drops, which I told her about at the end of lunch. As soon as I got her out of her high chair, she ran over to the carpet and got on the ground, pointed to her eye as she squinted and said, "eye". That girl still remembered.
  • She watches those around her with intense absorption: Maddux wore a button-down shirt today and wanted me to cuff her sleeves. Ruby watched me quickly unbutton the sleeves at the wrist and fold them over twice. As Maddux walked away. Ruby pinched her wrists (she had on a long sleeved t-shirt) and held out her wrist to me to fold.
  • When walking upstairs with one of her baby dolls this week, she started by holding the doll's hand. Then she asked, "shoo shoo?", and put the doll on her shoulders and she said, "sssshoooo!". Guess what I do when we go up or down the stairs? I give her the option of walking, holding hands, or "choo choo", on my back.

Monday, November 14, 2016

Clowning Around

I had the unusual opportunity to photograph some clowns last week. While Ruby was in the hospital last year, we were entertained several times by Atlanta Clown Care.
 Ruby absolutely loved the clowns, and I loved taking pictures of their interactions.
The organization used some of my photos on their page, so they had my contact info. About a month ago they called me to request more 'official' photos. The Atlanta branch is starting a new venture (same 'service', different name) and can't use any of their old promotion stuff.
When the clowns visit kids in the hospital, they entertain and leave them with what I would call trading cards. They are small cards that contain a photo and the clowns name and a few 'fun facts'. All of that must be redone for for this new company, so they were in need of a photographer.
I was happy to oblige; the service they provide hospitals and patients is one that is very valuable in my eyes. Once we confirmed the date and time, my clown contact begged me to bring Ruby along. And when I told her that I never bring my kids because they would likely distract me, she assured me that with about ten clowns around, Ruby would be plenty distracted herself and it would not be a problem.
So my sidekick and I packed up for the afternoon and drove south. Ruby was smitten with all of the make up, the clothes, the music, the heart and soul. She kept throwing one of the juggling balls with one clown, then sitting and listening to another play guitar, then laughing at the antics of yet another.
As we were finishing, they asked for Ruby to be in a few photos as well. She hopped in and acted like a total pro: seriously, I didn't have to place her or guide her or anything... First photo shoot with Ruby was a total success!

Saturday, November 12, 2016

Good Week

Taste and see that the Lord is good; blessed is the one who takes refuge in him. - Psalm 34:8

This last week was good. REALLY good. Ruby had a few good days at school where she continued to call to her classmates by name (as best she can say them, which she is improving on daily). Ruby had speech with her myofunctional therapist and continued to improve on her 's' articulation. Ruby pulled out several words in her daily life without any prompting. (She focused intently on saying 'blueberry' as she ate blueberries this week, she said "come" to me more than "mum", she told me several times: "mom. come. sit.", and she has tried to tell me about events that just passed (like someone just putting on their shoes or coming home).)
But the best thing about this week was playdates. Ruby had three playdates! We had no school on Tuesday due to voting, so Ruby and Maddux were home with me. We invited friends over, one of Ruby's best friends, and played for a few hours in our front yard. The girls had a blast, and it was so fun to Ruby in action with her friend. The two of them took turns pushing each other in one car and then they rode together in another car.
The next night we had friends over for dinner; they have a little girl just a few months younger than Ruby. Ruby was an AWESOME host to her, inviting her to play with all of her things and doing her best to interact. Two days later, she (the other little girl) asked her mom if Ruby could come over to play at her house. The girls had a blast playing kitchen and legos and dress-up.
Cannot adequately explain the coolness of this. My girl has friends.

Thursday, November 10, 2016

Soccer Star

While the first few weeks of Ruby's 3-year-old soccer experience were not ideal, her season ended well. I posted a video from one of her first two times on the field: they showed her somewhat participating. However, most of the time, she was not into it at all. It shocked us because Ruby loves to kick the ball in the front yard and on the big field when we go for Maddux's practices and games. And my girl is not shy in a large crowd. For whatever reason, the combination of the two, plus two parents and two siblings 'supporting' you during your session was too much. Ruby didn't like to participate and was very moody the whole time.

Thankfully, she turned it around for the last two practices, really rising to the occasion. On the second to last day, they did a few scrimmages and Lehr caught this awesome clip. It totally shows who Ruby is at the core of her being: a champion for others. That kid on the other team ran by her to score a goal and all Ruby could think to do was cheer her on. Love. Her.

On the last day she had a great time maneuvering the ball around when asked and joining in a little scrimmage at the end again. Here is a video from her last day:

Tuesday, November 01, 2016


The kids were the ones to suggest a family costume this year, so this girl was all kinds of excited. Early in the summer they decided on Star Wars, Force Awakens version. We pulled up photos of our characters and figured out which specific pieces we needed to buy or could make. Then I went to countless Goodwill stores over the course of the next few months. Eli's was a no-brainer to pull together, but Maddux's and Ruby's were trickier. The weekend before the Little 5 Points parade, I caved and took them to Target. All three for $20 each. Honestly, cheaper than it would have been to make them, likely.
In the end, Lehr didn't end up dressing up - we just couldn't pull his Han Solo together. Next year is his year, he says.
Ruby was allowed to dress up for school; I went with the bat fairy from last year for school because it was less likely than her 'real' costume to come home stained. After a quick Halloween party, the parents got to take the kids around the parking lot for a trunk-or-treat. Given the afternoon ahead of us, I didn't want to stick around too long for that (Ruby needed a nap!), but we did hit a few cars. And wow...they were awesome! So many parents took the Trunk thing to a whole new level!
The kids had a great time on Halloween, even though it was a Monday night. We did our annual neighborhood thing and 'paraded' down to the pool for pizza followed by trick-or-treating. Everything started right on schedule and we got started on the main event earlier than usual.

We brought a wagon for Ruby; I was not going to be able to carry her much and there was no way she could walk all that way. (It's a mile just from our house to the pool.) She got out every few houses and trick-or-treated with Lehr or one of the kids. She loved every second of it. A few lollipops, but no major damage in the candy department.
 The big kids had a great time, running around between us and houses with their friends. The early start allowed for more of our trek back to be in daylight. They seemed to have a steady stream of candy consumption, which I totally chose to ignore. We covered even more houses than last year (as we do each year), and they were still in bed at 8:30. Life is good!

Monday, October 31, 2016

Dance Fever

Ruby loves music. Any music. But when she hears a song that she connects with, she really loves music. And she loves to dance to it. Her taste is all over the map, but she leans towards Adele, Meghan Trainor, and (this week) Let It Go.

Friday, October 28, 2016


I talk about the weight of Down syndrome in many ways, but that word can be easily misconstrued. Sometimes weight goes unnoticed. Sometimes it's just the extra stuff in your pockets that you don't notice carrying around. A long time ago I vowed to make my posts as honest as possible so that readers struggling would feel the comfort in company that I have felt from other honest blogs. I know that sometimes comes across like it's lots of complaints about all that comes with Ruby's diagnoses.

So I need to set the record straight; even when I feel like I'm so far behind on all of the therapy stuff I should be doing in addition to what we do, and all of the cognitive stuff I'm missing, and all of the skills I'm forgetting to work on daily, I don't necessarily wish away Down syndrome.
Because, here's the thing, I don't think about it every day...some days it is just a little bit of extra weight in my mommy backpack. Sometimes I even go weeks without thinking about it (not during the school year). And I can't imagine where Ruby ends and it begins. It's part of what makes her her. And her spirit is so amazing, so kind and gentle and compassionate. She runs to me and hugs my neck when I return from the store. She waves and joyfully calls "Byeee!" when Lehr leaves. She calls out "E-ii?" and "Axxxx" every morning when she and I leave her room, searching for her siblings. Ruby doesn't know a stranger; she seeks a connection with everyone she encounters. She spends so much time creating meals in her play kitchen, and tending to her babies' needs, and reading books on the stairs. And if someone falls at the playground and cries, she says "boo?" (as in 'boo-boo') and rubs my arm, asking if she can go comfort them. How much of that would be present if she didn't have Down syndrome?

Wednesday, October 26, 2016

Swim, Little Fish, Swim

I love reading blogs by other moms. I've been doing it since the beginning of the Internet. When I find a mom that has a shared experience with me (which they all do because they are, duh, moms), I often hear my own voice in their words.
This is definitely true for this post. It appeared on a blog by a mom I admire from afar. She has so many children and two of her younger ones share Ruby's number of chromosomes. When she posted another blogger's words this month, I found myself reading and rereading the same words daily. It's just that good.

I love what she says here:
If we do not create space for people with Down syndrome to be, I don’t know… people with Down syndrome, then we will forever be trying to make them something they are not. Like good ol’ Einstein once said, “But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” 

Can I get an amen?
In some of my most frustrated moments I often find that I am totally holding Ruby up to standards of older children we happen to be surrounding ourselves with, or kids with excelling abilities far beyond her capacity, regardless of her extra chromosome. I don't judge Maddux's intelligence based on Eli's ability to create lego masterpieces, and I don't hold Eli accountable for writing and drawing with the depth his sister does. So why do I feel the need to hold Ruby at a baseline that is set by others?
Somehow I manage to get myself so off-track that I stop seeing the amazing heart and worth of this child in my search for her success in speaking with perfect articulation or completing a task for the sake of checking it off of our to-do list.

When we are having our best days - when I see Ruby excelling, when I see Ruby shining in a crowd of status quo - it is when I am able to look at her independent of any standards or comparisons other than her past performances: I see her amazing progress and just revel in that. I see her for the awesome fish she is.

Sunday, October 23, 2016

Terrible Threes

Terrible twos, they tell you. But for our family, three is a much harder year.

Ruby is still the least drama-filled of my toddlers, but she is three and she reminds me of that often.
The week we were at the beach, she started using "NO!" as her primary word. All. Of. The. Time. Do you want a snack? NO! Can I read you a book? NO! Might I look your way? NO! Kind of ridiculous. Thank goodness it is not something that consumes her vocabulary every day. (But the days that it does, I just might pull out some of my hair.)

Ruby's always been 'wreck it Ruby''s likely her rougher nature in playing has to do with often playing with older kids (her siblings and neighborhood friends are all older). She tends to be the kid that will walk through the streets built for matchbox cars or collapse the block stack built by others. It's all a game to her. And we don't have WWF matches in our house, but tickle battles break out with Daddy on occasion, and that always means on-the-floor-dogpile-type interactions with Daddy and the big kids. That may be why when she is with boys at gymnastics that start to wrestle around, she joins in and lays on them. And her love for being social means she will violate your personal space when she says 'hi', and it may turn into a take-down hug or a 'shove' as she feels she needs to make contact. (We work constantly on 'shake hands to say hi' to give her that contact in another way.)
Most of it I can take in stride...some places have me more on edge than others, but I don't lose too much sleep over serving size interactions with kids at the park or in most of our days. School is hard though. We had an incident one of the first few days where Ruby picked up a little girl's hand and bit her fingers. No prompting...just did it. Then she bit another child's back last week while they were out on the playground. We talk about 'mouth closed' very often at home (in fact, whenver I get Ruby dressed and she has to lean on my shoulders for balance, I always remind "mouth closed" a few times to make sure we don't have an unintentional bite), because I haven't seen her do this with an obvious desire to hurt. I'm not sure if that makes it easier or harder to deal with.

It's always hard when your kid is showing a behavior that makes you uncomfortable. That doesn't go away when they're older: Maddux and Eli still do things that I wish they wouldn't. But the younger stuff is where my focus is now, and it's probably because I feel the magnifying glass is so large on Ruby in general. There are so many times when we encounter something with Ruby that causes all of us to wonder how much of it is toddler stuff and how much is Down syndrome. At the end of the day, she's smart, but developmentally she's delayed to the point of being only just about 2years old. That means things still go in her mouth more often than with her friends and she's still figuring out social behaviors that her typical peers have likely worked through already.
And my girl is a copy-cat to the highest degree. Ruby learns so much from watching others, which can be a great thing. Unless it's a behavior you don't want her to choose. Like when kids start pushing each other a little. (She thinks it is a game and laughs as she starts to shove). Or when someone decides to spit. Or any other number of things that toddlers do. That doesn't mean she only strays outside of the lines when someone else does first, but it does add to the complexity of the situation when we work so hard on correcting a behavior only to have it come crashing right back in when Ruby sees someone else do it once.

Saturday, October 22, 2016

Soccer Girl

Maddux is back on a soccer team. She didn't think she wanted to play this season (she hasn't in a few years), but changed her mind just after the deadline and asked us if we could get her on a team. We were more than happy to try, as usually we have to push Maddux a little to participate in team sports. (This is usually a source of frustration for me because I see so much potential in Maddux when it comes to anything sports related; this girl is a natural athlete without even trying.)
So far, Maddux has scored at least one goal in almost every game and loved every position she has played. She (of course) has made fast friends with all of her teammates, and she's already asking if she can play again next season.
Done like dinner.

Thursday, October 20, 2016

All It Takes

These days my overall outlook, and mood, sways abruptly and severely from one side to the other. Optimism to pessimism. Encouraging to bleak. Joyful to depressed. When you invest so much time in 'training' someone, it's hard to separate yourself from the performance. As parents, we all experience this at various stages. I find it's exponentially more with Ruby than with my other two. The hours researching and implementing therapy strategies, the nights spent praying that tomorrow is 'the day' some skill emerges, the dollars spent on therapy sessions and all consumes so much of my time that when the wind slightly blows us off-course, I tend to crash. These are not good days, as Lehr would tell you. On these days, all it takes is one more instance of Ruby mis-articulating a word we've worked on forever, or acting out in a typical 3-year-old way for me to feel utter defeat. The metaphorical straw that broke the camel's back. It absolutely amazes me at how fragile I feel some days.
Thank God for the flip side. So many times I will be over the moon ecstatic because of something Ruby did, and when I tell someone about it, I will hear myself and think "this is so silly because it's so small". But I know it's not small - it's that word we've been working on forever, it's that skill that seems to always trip her up, it's that behavior that we have been trying to modify for as long as we can remember. When we have a breakthrough, nothing can tether me to the ground: I'm on top of the world.
Yesterday was one of those days. All it took was one of Ruby's therapists sitting in during her preschool class for one hour. All it took was her letting me know that Ruby talked a lot. All it took was her giving me the awesome news that Ruby was playing with friends - and they were playing back - on the playground. All it took was Ruby being her usual talkative self during Spanish to remind me that she can do it at school...just has to be where she chooses. All it took was Ruby using her mouth as best she can to form approximations of almost all of her classmates when we drilled their names before school. Yesterday was an amazing day.

That's all. It's the little things.

Tuesday, October 18, 2016

Maddux - My Love

Oh that girl.
As of late, I've been able to sneak little moments with her: before bed, after school while Ruby's napping, running errands. Random, unexpected moments that pop up when we definitely didn't plan them, but they allow for conversations. Thank you, God, for that.
Maddux is one who changes her mind about things often. Within a month she told me she did NOT want to go to Eli's school when she started 6th grade for the sole reason of not wanting to wear a uniform, only to reverse her story and tell me she definitely wanted to attend so that she could wear a uniform. And she seemed to have no recollection of ever feeling differently about it. That being said, she has some things at her core that I love and that seem to remain, regardless of the season  we're in.
Maddux wants to adopt. Dogs and kids. She's long since asked for a dog, and she would be an excellent caregiver; we have no margin for another living thing in our house. But she dreams about the day when she can have dogs, and she wants to adopt them. Maddux has also always wanted to be a mom (which means she wants kids). Recently she told me she wanted to adopt her children. We know a few families that have adopted, so it shouldn't come as a surprise to me, but it still reminded me of her beautiful heart.
This girl loves soccer. I'm so glad she asked to play again! Maddux is a dynamo on the field and she has made some fun new friends on the team. We are hoping she wants to play in the spring so that Lehr can coach her team.
Finally, Maddux joined a running club for the first 6ish weeks of school. Once a week after school she would run from 1-3 miles. Though running is not something she usually enjoys, she's fast. REALLY fast. And she had a friend in the club, so she had a good time logging the miles. Two outcomes: she asked to do the running club again and she is the fourth fastest girl for the mile in the entire school. So proud!

Monday, October 17, 2016

Head To Toe

Last week I discovered the COOLEST theater for Ruby to visit: Alliance's Theater for the Very Young. I've take the kids to the High Museum once or twice when they were younger, but we've never attended Alliance, and I never knew this particular opportunity existed.

I chose to take Ruby during the Eric Carle production. Tickets for Ruby, Lehr and I were only $20 total, so it was a no-brainer. The performers consisted of two dancers and one musician. They acted, danced and sang out movements and sounds of each animal from head to toe (just like the book). The kids could participate if they wanted; it was very laid back. We will definitely be going back!

Friday, October 14, 2016

A Day In The Life

Ruby. Never would I have imagined a 3-year-old could have such a full schedule. This girl has anywhere from 2-4 therapy sessions each week with a therapist (and countless at home with me), three days of school each week, gymnastics once week, at least two trips to Gigi's each month, and then there's always a doctor's appointment in there too. When we get a day at home with nothing, it is more than rare, so we try to capitalize on it by staying home and playing in the yard and house all day. Yesterday we had one of those days.

I decided to pull out the video camera to capture just a few minutes of what keeps us busy on those days. This always serves as a good reminder to me of all of the very typical things Ruby does. She loves music and attaches herself to songs without any prompting by me. Ruby loves to feed (and diaper and care for) her baby doll(s). Anything that we do surrounding therapy engages Ruby and she is usually happy to participate. She loves books, and is so proud of herself that she recognizes and names most of the letters of the alphabet. And even though I didn't get to capture too much of it, this girl is having multiple conversations with me throughout our day. She says, "baby" "shoes" "mama" "OK" "whasssat" and so many other staple words to give me snapshots of what she is thinking.

Tuesday, October 11, 2016

Big Boy Baseball

Eli's love for baseball has spanned his entire life...he has held the game so close to his heart that even at the earliest of ages, it was obvious to us: we met that by giving him a baseball tee for his second birthday. While he has dabbled in soccer and basketball, his passion has always been for the diamond.

I can't help but think back to the early days...I remember the day I took this photo.
Eli was not even three years old. We visited Fullers Park for a picnic dinner and ended up (of course) on the field, with Eli practicing some pitches, and then us pitching to him so he could run the bases. This was a no-brainer fun night for Eli...he has always, even at two, loved everything about baseball.

Tonight I sit at Fullers Park, as I have so many nights since he turned four and started playing 'for real', watching him play. Tonight I sit watching his game at the same field we played in that night, the 'big' field where the next to biggest kids play their games. Tonight he stands on that same mound he stood on at two years old and he pitches as one of the big kids. And I can hardly stand it.