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.


Clarissa said...

I have really grown to love your blog- as an Autism therapist with CHOA, I often have no idea what life is truly like for the parents I serve. How completely frustrating and overwhelming circumstances can become, and how joyous it is when life is rolling smoothly, although we know those times can feel so very few and far between. Thank you for being a voice of truth and honesty!
I was going to give you a suggestion in regards to the toileting but I'll only do that if you want. I know how completely aggravating unwarranted advice can be. Please respond if that is the case. Good luck if not!

Nicole said...

Clarissa....can't find an email address for you...I'll take any hints/tips you have!