Saturday, August 27, 2016


This last week Maddux participated in the Elementary School annual Boosterthon fund raiser. She was super pumped because this year would be her chance to do the color run (4th and 5th graders only). As not excited as my speedy girl usually is about running, she was gearing up!
The night before we picked out her clothes: a pair of white shorts that was already marked with paint, shoes that were not brand new, and a pair of clear, protective glasses (smart girl!). It was especially humid the morning of the run, as we were expecting rain by the afternoon. This made the color powder hang out in the air even longer than usual and stick to all of us, even those of us that weren't running through it. (I think Maddux and I both had it in our lungs for two days after!)
As expected, Maddux joyfully ran at least as many laps as she could to max out her pledges, opting to find the color every time it was thrown in the air. Maybe she will learn to love running yet?

Friday, August 26, 2016

School Update

We started school for Ruby, finally!
 It's been a GOOD two weeks. She loves loves loves school and smiles and claps when we pull into sight of the building. I have been checking in with her teachers when I pick Ruby up, and this is what they say:
  • She nods yes or no but is 'quiet' at school. That is shocking, since this girls is chatty and loud at home.
  • Ruby gets along with others while playing in the classroom, shares AND takes toys away (typical for this age).
  • She eats snack and signs/says more.
  • Ruby GOES POTTY!
We are excited to already have two consistent weeks behind us!

Sunday, August 14, 2016


Another late night start to this post, followed by many revisits during times when I was struggling. Because of that, my words are less guarded or filtered than usual. These thoughts and emotions captivating my mind, my heart, more than I would like are very raw. Almost like a raw onion: so pungent that while on this train of thought my eyes are flooded and so bitter tasting that I recoil.
And before I get into it, I know... I really do. I know Ruby is awesome. And I know I am extremely (EXTREMELY) blessed. And I know there are worse things. Heck, we just finished beating cancer...I should know better than to feel anything other than grateful for each and every minutia of this life. But I'm human and often times that means I suck at letting my imago dei shine. There is nothing you can say to me about these skewed thoughts and feelings that I don't say to already myself: selfish, greedy, missing the point, whiner - I cover them all daily.

So even though I'm all kinds of stubborn and stuck in the bad mood I've created, I'm thankful that I have a patient God. I'm relieved that He is bigger than my tantrums, and I am grateful that he will love me even when I throw them. Which is good, because this one is a big ole tantrum and it's lasted a long time.

The truth is that I have been spending most of my days faking it as of late. And the problem with faking it is when you run out of fake, there's nothing left. And, if you're like me, that faking it makes you mad/sad that you feel you have to fake it. Doesn't matter that you're mad at yourself, anger is anger and it isn't very becoming.

Because I pick everything apart in my brain and over-analyze it to a fault, when I'm talking to myself about why I'm in such a state, I try to walk through a day and find emotions tied to events and interactions. My hope is that I can find correlations to help me root out the cause. What I find is that the times when I get to spend one-on-one (or even two-on-one sometimes) with Eli and Maddux are usually non-faking, good times, even when those times include correction or mundane tasks. The times when I'm at home working with Ruby and she is giving me her all are good times. Top of the world good times. The times when I leave our safe house and measuring sticks are all around Ruby and I, those are the bad times. The times when I'm working with Ruby and her focus is anywhere but on me, or when we are having a really bad day with integrating and inclusion, those are the dark times.

That over-analyzing takes you down a path regardless of which way it's pointing. The good path is paved with highlights of real connecting time with the kids or milestone-reaching by Ruby. And I know that the path is paved that way because I'm viewing things differently on those days; I'm seeing the good all around me and noticing all of the amazing ways God is loving me.

But the bad's a dark one. A bad focus day for Ruby reminds me of the bad therapy session the day before which reminds me of the less-than-positive event recounting I read from a mom of an older child with T21 which reminds me of the last park day we had when I had to keep Ruby within reach at all times so she didn't push any kids. A day that finds me getting after the older kids points out that I have no patience left for their mis-steps or learning curves which points out that I'm not allowing them the space they need to make mistakes which points out that I'm mean and snappy with everyone in my family. A day where I spend all of my energy watching Ruby's every move to see if she may be trying to tell me she needs to use the bathroom reminds me that we are using our time, ALL of our time, for potty training and not speech or PT or OT or (gasp) something fun. And that stresses me out so that when she has an accident (or rather, multiple accidents), everything crumbles for me because so much is tied up in the daily effort.

Getting ugly here.

All of that weighs. It weighs a lot to have so much of my day consumed by research and speech drills and attempting new skills that kids younger than her have already mastered. It weighs a ton to have spent almost two months on potty training already but still be required to send her to preschool (and speech and gymnastics and anywhere I'm not within 10 feet of her and can deal with an accident) in a pull-up. (And when I say we've spent two months on it, I mean she's in underwear 24/7 when she's with me and our days are FULL of asking her countless times, taking her almost as many times as I ask, running to the bathroom or the back of my car where the portable potty is no matter what errand I'm in the middle of running and still having her have up to four accidents every day.)

And it's exhausting. It's exhausting to wake up and put on a positive face and tell myself, "Today, THIS will be the day she gets it." (Insert whatever 'it' that is heaviest on my heart.) It's exhausting to never stop looking at my phone when she's at school because I'm convinced they are going to call me about an issue. It's exhausting to watch her gymnastics class like a hawk because I'm not in there with her but do I need to go in and help Ruby follow directions better? It's exhausting to be reminded every time we are around any toddlers how little she is able to communicate compared to those younger than her. It's exhausting to hold my breath constantly waiting for something to happen that would exclude her from an activity (like not being potty trained, like biting or hitting, like not being able to keep up with her peers). Because, let's be honest, the magnifying glass of scrutiny is going to be on her more than other kids when she misses the mark. So I sit waiting for the other shoe to drop.

I've also come to realize with school starting that my sad/mad is coming from a different place too. I want more big kid time with my big kids. I need it and I pine for it. Not over-the-top fun time, just big kid time being 'big' together. Enjoying a big person movie with them. Hiking a long distance with them. Taking them to paint pottery. Running errands they'd like to run with them (and not a cart). Sitting on the back porch after school and having a leisurely snack and chat with them.

So that takes me back about four or five years....I was on a track with families around me. It was a track heading to a place with predictable milestones including sports and sleepovers and middle school. These families are still on that track, yet our track was interrupted. I see them sitting on the sidelines at a practice, chatting with their other kids, just enjoying hanging out, on that track that is moving forward. I see them volunteering in their kids' classrooms with the precious moments they have carved during the day, moving forward. And I see our track slowed to a crawl.

It hit me that this was consuming me from the inside when I heard a mom in Ruby's class as she looked at the birthday wall. She pointed to Ruby's name and said, "That can't be right...that would make her too old to be in this class...the cutoff is 34 months". And I hung my head and bit my lip to keep from tears, because that's how tightly wound I was. When a random innocent observation can hit me so hard, there's a problem.
The truth is, I am jealous. Jealous of her rule defaulting ignorance to a child that might warrant bending the standard rules. And I'm jealous of the mom who doesn't have to hold her 30lb toddler in one arm while she signs the credit card print out at the doctor's office because her 2-year old can stand next to her for one minute without running off or lying on the ground. And I'm jealous of the mom of a tween who leisurely walks around Publix, not having to push a cart and incessantly talk to their toddler about every color or item on the shelf to reinforce speech. I took Eli to buy a new pair of sneakers after dinner recently and it felt like the most relaxing, most rewarding 30 minutes of my day. We walked into the store, spoke to an employee, tried on and tested a few pair, and left. Selfish to not want to deal with 2-man coverage while in a store? Sure. But it was amazing to be able to enjoy my son's growing maturity, even in the small moments and that's what I'm missing right now.

Here we's all 'woah is me' and 'my life is so hard'... I know what this sounds like. I chastise myself for it often. Especially because we chose this. We knew having another child would put us a little further back on the track for a few moments. We knew adding a baby to our growing-towards-Independence family would mean taking a step back. But I get stuck on the reality that those few moments are going to last longer, and that step back has not been followed by catching back up with the pack. We aren't just a little behind those we were on a path with, we are now on a totally different path altogether. And this hiccup in our planned path, MY planned path, is something I find myself getting frustrated with. The stationary movement that our house churns through daily causes me to feel beat down. Like I'm on a treadmill of therapies and exercises and repeated passes at skills.

So I get mad. And sad. And tired. And frustrated. And and and. And I KNOW it's my lack of faith that this is part of God's plan and He will see me through it. And I KNOW that I'm not choosing joy when I get this way. And I KNOW 'it's not about me'. And I KNOW great work is being done in the midst of what I often wish wasn't present. But knowing those things and accepting them, truly embracing them, are polar opposites for me these days.

And right now the potty training hits me the hardest. I might be doing fine with everything else, and then out of nowhere spiral downward because I discover, yet again, that Ruby has wet her pants with no indication to me at all that she had to go or did go. And with every accident throughout the day I feel another nail in this cement coffin of self-doubt and pity. Total ridiculousness and indulgence, I know. But even the truth about where those insecurities come from don't make the feelings any less real.

So I pray. And I question what He's doing and why He's choosing this path for me. And I have to remind myself that this, this reaction of mine, is part of my answer: because I struggle with it so much. But I still fight back and dig my heels in. And when I do this I realize that I'm not done grieving Down syndrome.

I feel like those of us living in the range of special needs are constantly having to readjust expectations. And that means a level of repeat grieving. Grieving not being able to tell ourselves with certainty: 'it's just a phase'. Grieving the comfort of falling back on the knowledge that s/he will get it, because certainly s/he won't wear diapers/not feed her/himself cleanly/still not be able to successfully state her/his name by the time s/he goes to kindergarten. Grieving the hope of a strategy working when the reality of support needed for her/him to succeed is unavoidably obvious.

I feel like I say it all of the time, but it bears repeating (if nothing else, to myself): Ruby has allowed us to be on an amazing journey that brings way more joy to my life than I could have ever imagined. But it's not what I'd expected or planned on, and there is grieving for that plan along the way. When I feel bogged down, I play the selfish and ridiculous game of 'what if' or 'what my life could look like'.

What I'm learning (SLOWLY) is that this struggle is revealing my entitlement. My feeling that I should be past these parts of my parenting life. I should have more 'big kid' time with the big kids. Ruby should be able to go to school/gymnastics/soccer/a playground without crazy preparation on our part. I should be able to teach/train her better than I am. I should be in a different stage of parenting.

 And when all verses I lean on are falling on my deaf ears, He leads me to this a few days ago:

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. 

And duh. I know this, but this time, when I see this verse for the first time, I hear it a little clearer.

So I keep reading:

James 1:5-8  But if any of you lacks wisdom, let him ask of God, who gives to all generously and without reproach, and it will be given to him. But he must ask in faith without any doubting, for the one who doubts is like the surf of the sea, driven and tossed by the wind. For that man ought not to expect that he will receive anything from the Lord, being a double-minded man, unstable in all his ways. 

This is not a feel good post. I'm not tying it up with a pretty bow and saying "The End". These verses are amazing, but I'm still struggling with them. In the meantime I'm thankful that I have a patient God. I'm relieved that He can handle my tantrums, and I am grateful that he will let me throw them.

Wednesday, August 10, 2016

In The Clear

Another monthly check-up for Ruby at the AFLAC Cancer Center, and another clean bill of health. This one was a milestone visit as it marks 6-months, and with it comes two great changes for Ruby. No more meds on the weekends! (She doesn't mind taking them anymore, but anything we can do to distance ourselves from cancer is welcomed!) Also, we no longer have to go in every month; now we are on an every other month cycle.
Hooray for continued health!

Monday, August 08, 2016

Middle School Start

How did we go from here
to here
in the blink of an eye?!?

Eli started Middle School today. As in laptop-carrying, locker-having, class-changing middle school. Last week he was sure to rub into Maddux and his younger friend, William, that he did NOT have to be at school yet even though they did. However, he had a full morning of technology training one day, a conference with his home room teacher one day, and cross country practice most mornings. This was all pretty cool to me because it allowed him to be very comfortable on the campus (and in the building) before day one.
Thankfully, Eli was assigned a lower locker; had he received a top one, there is no way he would have been able to reach to unlock it. His schedule will keep him quite mobile this first semester, as he has to travel from the 3rd floor to the 2nd floor to the gym (across the parking lot), back to the 3rd floor, then down to the basement. This afternoon he told me he likes Middle School better than Elementary School because of all of these transitions. I think it makes him feel independent and grown up.

Eli is taking band this year; instruments have not been assigned yet, but he's hoping for a brass horn of sorts. Eli is also taking Latin this semester. He has his first test next week, so I was using flashcards with him tonight to help him study. Before we started, he gave me a quick tutorial on how to use flashcards. Bless his heart.

Cross Country is something we discussed last year and I'm so glad he still wanted to join by the time school started. This was another 'before the first day' thing for him; they have had voluntary runs for the two weeks leading up to the first day. Eli has been logging about 8-10 miles a week.

Friday, August 05, 2016

Potty Training

This post has started and stopped, been written and deleted, forgotten and found again... Might as well post it now before any more time passes!

Just over a month ago we officially started on the business of potty training Ruby. We'd had the seat out for months, let her sit on it before baths and bed, talked it up, but hadn't really started anything official.

To be perfectly honest, I did not anticipate the drawn out ordeal this has become. I trained Eli in a few days with minimal accidents for a few weeks after. (Night training is another story, but that's not a concern of mine at all right now.) Maddux was trained in a day, I swear, with no more than two or three accidents ever, including nighttime. I thought this would be a no-brainer, especially because Ruby is such a modeler and picks up on routines and whatnot so quickly.
Well friends, it has not gone as planned and this mama is at a loss. We will have great days, days where she doesn't have any accidents and always goes when we take potty breaks. And then we will have days where she has two accidents before 10AM. And these days will polarize how I feel about it all so harshly: I will be so hopeful that this is the start of a new era when she has a good day, and then when she has a less than good one, I feel like she'll never get it.

In the beginning, she was a camel. Even though I was giving her water like crazy all morning, Ruby would hold her bladder from 8AM until 2PM...crazy! That lasted for a few weeks, which made creating successes difficult, but we focused on the staying dry part and talked it up a lot. That seems to be out the window now, so it's anyone's guess as to what her body can do at this point. The main hangup has been her telling us she has to go. At a friend's house the first week, she told me three times as she was running to the potty, and she actually went once. I was SOO excited. But since then, she's only told us and actually gone maybe twice. Most days she won't tell us at all. (Her successes come when she goes during our scheduled visits.)
So we are in underwear most of the time. The rare exception is gymnastics (I'm not in there with her and I can't put that on the instructor) and the occasional instance when a young sitter or friend who is doing me a huge favor is watching her. She WILL get it. But in the meantime, I just may lose my mind for spending so much time in the bathroom and so much energy on trying to predict when she needs to go.

Monday, August 01, 2016

First Day of Fourth Grade

It didn't hit me until later in the day that this was the first time Maddux has ever gone to school without Eli there too. Not that she ever needed it, but Eli always walked her to her class on the first day. It is so odd that she's there 'by herself' this year.
We started the morning with homemade egg mcmuffins (Maddux's choice). Eli woke up and went to the bus stop too (in his PJ's to rub it in that he did NOT have school today). The bus stop 'seniors' are now Maddux and William, which is just nutty...
Maddux's teacher seems to be a great fit. When we met her at Meet-N-Greet, she ended our brief chat by asking Maddux, "Do you want to hug?" She gets my girl :)

Maddux came home very excited about her day and her class. Her best friend is in her class and the girls chose to sit at the same table, across from each other. We cautioned Maddux to make good choices so she and her friend could enjoy their time together instead of being separated. Maddux assured me she had a great (not too much talking) day and they both made good choices.