Weltschmerz

I've never heard of the word weltschmerz until I read a book called Running is my Therapy by Scott Douglas. In there, he described weltschmerz as "a German word meaning sadness about how reality doesn't live up to one's hopes." His description was centered around his diagnosis with depression and how that word captures for him the struggle with reality, how he fits into the world and what truly matters.

When I read that passage, the word itself resonated with me because I've often said that disappointment comes when our expectations aren't met. We get frustrated, upset, sad and stressed in life when our expectations don't become reality. If we can set aside the expectations and live in the moment, our lives are more fulfilling.

This sentiment resonates with me. I have the the saying, "Love the life you have, not the life you expected to have," resting on one of our family pictures. It's true of everyone, but it's especially true for me as Teddy's mom.

This is an ordinary moment in the life I have.

There's a poem called Welcome to Holland, along with a follow up that addresses the emotions years later. I've heard from many parents of children with disabilities that these poems resonate with them, ease their sorrow in the early days of diagnosis and put words to what they're experiencing. In my mind, Welcome to Holland could be summed up in a single German word: weltschmerz.

Putting a word to this harder to explain sentiment is handy to me. It doesn't change the life we have, but it gives me a word for the feeling that comes when I forget to live in the moment. Now I just need to learn a beautiful German word that captures the essence of living in the moment to counteract any weltschmerz I might experience. 

Big Feelings

The last couple weeks we've spent time in our household talking about big emotions and how to handle them. The conversation largely occurs with our older son, who is feeling fatigued from COVID, stressed by virtual learning, and learning some tough lessons on consequences. He's capable of understanding these topics, expressing his feelings and learning to work through good coping skills. 

Even with that comprehension level, it's still tough to work through these times and the big feelings that come along with life. We struggle with that on nearly a weekly basis. 

Now imagine those struggles with a child who is a mystery. It's a mystery how much Teddy actually understands. We don't have a good gauge of this because it often depends on whether Teddy is willing to complete a task. If he's interested, he can do some pretty incredible things. 

It's a mystery what Teddy is thinking. We have guesses, and sometimes it's obvious. Other times, there's no way to even guess at what is going through his mind. I've often said that selective mind reading would be the superpower I would pick if given the choice. 

Life from Teddy's perspective ... still doesn't shed much insight on his thoughts. 

To combine both of these challenges, it's really tough when we say "no" to Teddy. Sometimes we understand what he wants, but we're still saying "no" to ice cream for breakfast or playing in the sink like it's his own personal waterpark. It's hard to know if he understands that we understand or if he thinks we're clueless. 

Sometimes it's easy to redirect Teddy to something different, and other times he's obsessed. When that happens, it becomes physically redirecting him, so that our basement isn't flooded from a kitchen sink waterpark. (Seriously, this is our battle lately. It gets water everywhere, his clothes need to be changed because they're soaked, dishes get broken and he drinks arsenic water. Other than that, no issues with it.) The challenge I have is that Teddy is getting so big that physical redirection, when he really wants something, gets to be a tougher challenge. He's got a good amount of size behind him and sheer determination. 

Then when he doesn't get his desired outcome, I swear he feels unloved. He melts into tears, sobbing, like we hate him. This can last for a few minutes to longer periods, like 30 minutes of miserableness. It often takes something significant for a change of pace, like going for a car ride or outside, to get him to shake the sadness. He definitely doesn't understand that we're not happy with his actions, not him as a human being. 

Ugh, big feelings are tough for kids. And they create big feelings for us as parents. Guess what? Those are tough, too. 

Some Days, It's Tough to be Teddy's Mom

I feel like I've said this before, but some days it's just tough to be Teddy's mom. Or dad. Or brother. Or grandparent. Or any relative.

He's such a darn lovable kid, who approaches life with reckless joy and lives in the moment. He's happy more often than he's not, unless you're trying to make him do something he doesn't want to do. Sometimes it's those are the moments that it's tough to be Teddy's mom when you're physically trying to peel a 50-pound child who's only a foot or two shorter than you off the ground when he's melted there like a pile of jello. That's physically hard and wears at your patience rather quickly.

The harder days to be Teddy's mom, though, are when it's not the behaviors that make things tough. It's the days that you have to confront that our life is so different from reality for many people. The worst of those are the seizures that put life on hold, terrify us and leave us all worse for the wear. But there are other things that have a similar, albeit less traumatic, effect.

We're pursuing neuropsychological testing for Teddy because we think it'll be helpful for his team at school as well as for us to support Teddy in the best ways at home. In a perfect scenario, we'll learn some things that will help to minimize those behaviors I mentioned above. We've been waiting for 4-5 months for this appointment, and the first portion was a parent interview. That meant I spent 1.5 hours walking through everything Teddy can and can't do. Unfortunately, there's a lot more can't than can when you're asked to compare Teddy to a typical 6-year-old child. I had to chuckle when the only questions that didn't apply to Teddy on the ADHD screening were the two that involved speaking ... only because he doesn't speak.

It might sound weird because clearly we know all the things Teddy can't do that a typical first grader can. But it's such a normal part of our life that most often we complain about things being hard, but we're still used to it. It's the times that you're forced to write down and tell someone else exactly what your child can and can't do that remind you of the thing you try to avoid focusing on: how different your life is from others, from what you expected.

But, I've filled out all the forms now, so I'll give the teacher portion to his teacher, collect that and continue on with life until we do several hours of testing next month. I'll hope for the best that day and then relive all these feelings when we get the results in black and white. Still, it's worth the emotional roller coaster for the information we should gain.

Joy

A few weeks ago, I took both boys to church by myself. It was a feat that required AJ's maturity to sit in a pew by himself for large portions of Mass while I was busy making friends throughout the entire church with Teddy. It happened to be Gaudete Sunday, which celebrates joy. I heard enough of the homily that it resonated soundly with me.

The first takeaway for me was that the version of Gaudete means to rejoice in the command form. It's not an option only when we feel like it but a command to find the joy always. Not just when things are easy. Not just when your child sits nicely through church. Not when everything is great. Instead, always find what is great in everything and rejoice in that.

The second, though, that really hit home was the quote from Pierre Teilard de Chardin:

"Joy is the infallible sign of the presence of God."

One of the things that we've found in common with other parents of CDG-PIGN kiddos is the extreme happiness of our children. They are the most exuberantly happy children (unless they aren't, of course). In fact, one of the girl's nickname is Joyful Julia.

If you know Teddy, you know what I'm talking about. That ear-to-ear grin with dimples all the way simply because he embraces the happiness of the moment, whether that's seeing someone he loves, sharing the fun of something incredible (like his toy vacuum) with another person or doing something incredible like playing with AJ, rolling around with me, being tickled by Dave or something else that others might find ordinary. Teddy lives life fully with joy.

So I nearly teared up in church as I snuggled Teddy (to hold him still for just a moment) and said, "That's you, buddy. You're proof of God's presence every day."

And then I missed the rest of the homily because we had an usher we had to go visit. But at least I heard enough.

Entering the Service World

For my entire adult life, I've worked for a non-profit organization that supports people with developmental disabilities, mental health issues and other needs to live and work as independently as possible in their communities. I grew up in a small, rural community that was not diverse (at the time) and had limited exposure to people with different needs and abilities, so needless to say, I learned a lot when I started at Innovative Services ... not just about human resources but also about disabilities, abilities and so much more. I often would say that working for Innovative made me a better person. It made me more compassionate, considerate and open-minded.

Now, I firmly believe that my career at Innovative was God's plan to prepare me to be Teddy's mom. Although I've always worked on the administrative side, that's still 13 years in the field to understand the services provided, the processes used and the language spoken.

The thought had crossed my mind when, especially when Teddy was first diagnosed, that one day he'd be receiving the same type of services Innovative provides. That was weird, but it was a long ways away in my mind. It was after Teddy made it through childhood when Dave and I face the tough decision of what is best for him. Ugh, even typing that makes me want to curl into a ball because I don't want to consider those type of things.

But, what I realized last month was that the time when Teddy receives services from an organization likely is this fall, not when he's an adult. *Gulp*

See, Teddy's been a part of our county-funded program since before he was 2. We pay a cost-share to the county each month for the supports he receives, which includes supplementing childcare beyond the typical costs (since Teddy isn't a typical child). We've still hired our own childcare providers, who are technically employed by Teddy. (He's much nicer than his mom. He's never fired anyone.) We've found nursing or human services students from our local university who have been absolutely fantastic with Teddy. We've been fortunate to find students who have at least one day a week completely available, which worked well when Teddy was home full or partial days.

However, when Teddy goes to school full time this fall, that changes the childcare dynamic. I'm either limited to working only during the hours that the boys are at school, which is really limiting, or I need to find someone to work from 3 to 5 p.m. Not really likely.

That means looking at agencies that can provide the care and support Teddy needs instead of a person. The good news is that we appear to have three options in our town, and there's the possibility of Teddy being supported in our home or in an after-school program. It's not bad news, but it's really weird to have the same discussions about needs and supports when it's your child.

It's weird, unsettling and slightly depressing to talk about your son's behaviors (such as his flop and drop technique when he doesn't want to do the task at hand) and risk for elopement. (That's the fancy word for his desire to explore our neighbors' garages and his tendency to wander wherever is most interesting.) Then comes the discussion about safety skills, which are essentially non-existent. Quite simply, the fact that I was on the answering end of an assessment rather than the provider side was weird. (Granted, I think I only went along on one or two assessments for the experience.)

This will be a challenging transition, not because I don't believe Teddy will receive excellent care and support but because it's something mentally tough for me to wrap my arms around. There's the things that I know will come will working with an agency. For example, I know he's going to have a wider variety of staff who work with him because turnover at any company will be higher than what we've experienced. (Let's not talk about how I almost cried when our first sitter graduated and moved away to become a pediatric nurse.)

But, I'll end this with a positive. I spent my work day today at a picnic for all the people we support in one of our geographic regions. I got to watch our youth staff interact with the children they support and see those genuine relationships. I often hear about the amazing services we provide and the success stories, but I really needed to see it in person to make me feel more comfortable about this.

Just don't ask me in a month or so when we're making a decision or in two months when we transition services.

"I Don't Think Teddy Will Ever Talk"

"I don't think Teddy will ever talk."

That sentence from AJ while I was doing dishes stopped me in my tracks. Fortunately, Dave was home as well to help steer the conversation. We've talked about Teddy needing more help and using his tablet to help him make choices, but this was the kick-in-the-gut conversation that AJ is understanding Teddy is significantly different than him.

The topic came up again today when AJ asked why Teddy doesn't have the Pizza Hut reading program. I explained that AJ didn't have that program either in 4K. AJ proceeded to say that he didn't think Teddy would have it next year. He followed up with saying that he thinks Teddy should be able to read words like "a" and "my" already.

I paused for a moment to gather my thoughts before explaining that even if Teddy could read those words, we wouldn't really know right now because we're still trying to find ways to understand Teddy better. I said that we know Teddy knows some words, like bus, because he looks for a bus whenever we say that word. I said, though, it's hard to know exactly what Teddy knows and understands. AJ's response to that was, "Right. Because you can't read his mind."

I agreed and said that I wished that I could, but there's a lot of things we're learning to understand when Teddy tells us in his own way.

These conversations are tough. I struggle to find the right things to tell AJ to help him understand and make sense of Teddy's abilities despite his differences. I know part of the reason I struggle is because I still long to hear the words "I love you" come from Teddy's mouth ... and I don't know that they ever will.

He says that phrase when he climbs into my lap at meals (and drives me nuts in the process). He says that phrase when he flaps his arms and jumps when he sees me walk into the house. He says that phrase when he snuggles into me. He says that when he covers my head with a blanket and then peeks his head underneath by mine. He says that phrase with his joyful smile.

But that doesn't stop me from wanting the words.

And that's just the wistful part of me. The practical part of me wants to know when Teddy's hurt or ill, what he wants, what he knows and what's going on in that mind of his. As I told AJ, Teddy knows a lot more than we realize.

These will be the first of many conversations with AJ as he develops a full understanding of Teddy and comes to terms with it. He's beyond thinking that Teddy doesn't do things because he's a baby and will continue to question why Teddy doesn't do things that other children his age do.

On the bright side, despite these tough conversations, AJ is already an empathetic child who is extremely helpful. (He's the only person who's ever flossed Teddy's teeth. Not even the dentist attempts that.) He will be already is a better person for having Teddy as his brother.

And lest this post seem disheartening, I need to end it by saying that my phrase this week has been abundantly blessed. Dave has been gone all week for work, and my mom, who often helps with the boys when we need help, is in Hawaii. Our sitter offered to help with bedtime all but one night. My aunt came up from Milwaukee for a visit, took AJ to swim class and spent one night with us. Dave's folks came down to stay with AJ while I took Teddy to swim class (and originally planned to come both nights for swim class). My friends came for dinner one night, and one brought AJ a coveted Hatchimal Collectible. Our village is here to help us raise our children. We are indeed abundantly blessed.

Family Play to Learn Night

This post is tough to write, quite simply, because tonight was tough. I think the reason why is because expectations did not match reality.

Teddy's school had a Family Play to Learn Night that was billed as an opportunity to come explore his classroom with him with the opportunity to have a 20-minute slot to meet individually with his teacher. I had assumed it was open to everyone to come play and explore and then have some focused time to hear specifically about what Teddy does in the classroom.

So we arrived about 30 minutes before our scheduled time. The classroom was empty except for his teacher when we arrived, and she welcomed us. She said she could meet with us right away and that we didn't need to wait, which was nice because Teddy doesn't wait well.

When her opening statements were that the classroom was completely rearranged because of Teddy, that's when I realized this wasn't a night of family play. It was really his fall conference, without any of his therapists (who had attended all his conferences last year).

His teacher was pleasant and positive, emphasizing some of the progress that Teddy has made and adaptations that have helped him, but the message was still there that Teddy was the reason the room was rearranged, Teddy has a constant adult presence (which is largely the reason a second aide was added to the classroom) and that Teddy has been integrated into the traditional 4k classroom on limited occasions (instead of daily like some of his more advanced peers). Tack on the fact that Teddy typically arrives 5-10 minutes late because the bus is consistently late, which she said was not that big of deal because it was outside play time.

Honestly, him missing outside play time, which is his favorite thing, is a problem to me. It's even more of a problem to me because she said that recess is how the students in the traditional 4k class know Teddy ... if that's his only form of daily integration, why does he have to be shortchanged because the bus can't get him there on time every day?

His teacher said that even though it's only October that she's thinking ahead to next year. She approached the question of whether we were open to Teddy going to a different school that his home school (in a really tactful manner). I acknowledged that our hope is that both boys attend the same school, which is why we were trying to figure that out last spring already and were essentially told we'd look at kindergarten placement after 4k not all at once. At that same time, we were also told that students with needs similar to Teddy's have been successful at his home school.

Ugh, it just wasn't what I was expecting. I expected AJ and Teddy to get to play together and have some conversation about what his days looked like to hear his routines. Instead we got nearly an hour (and I truly appreciate that amount of time, I do) of the challenges and some of the possible solutions they're working to implement. I got the names of Teddy's OT and PT (for the first time!) and his aides. He's made progress, and there's definitely a desire to help Teddy succeed.  There was really a lot of good, but I wasn't mentally prepared for it and had tears running down my face as soon as we exited the school.

I think had I realized this was his conference for his progress report that we'll get in a few weeks, that I would have mentally approached it differently. I don't know what else to say other than my favorite verse, Romans 12:12.

Let your hope keep you joyful, be patient in your troubles and pray at all times.

The Crying Mom

There are people who are cry publicly and people who don't. For most of my adult life, I've been in the group of people who don't cry. Working in Human Resources, I've had many tough conversations with people and pulled out the Kleenex box plenty of times for all those criers. There may have been a few times I barricaded myself in my office or had tears streaming down my face in my car as I drove out of the parking lot, but I was never the one to cry at work.

Quite simply, I took great pride in my ability to mask my emotions. Then along came Teddy. And that little bugger has ripped of that mask covering my emotions more times than I can count, including at his IEP this week. (An IEP is an annual meeting to review progress and determine goals and supports needed for the upcoming school year.)

We knew his IEP would determine where Teddy is placed for 4K next year. The options within our school district include traditional 4K classrooms, an integrated 4K classroom or an intentional 4K classroom. We also knew that a traditional 4K classroom is downright laughable for Teddy. The integrated class is co-taught by AJ and Teddy's teachers, with Teddy's teacher there to help modify the curriculum for those students who needed that support. The intentional 4K is the class for students who need such a high level of support, although they may integrate into a traditional class for brief periods as their abilities (and IEP goals) allow.

We knew Teddy's teacher would be able to make the best recommendation for Teddy to be successful because she's familiar with Teddy and how he does in a small setting as well as how the integrated classroom functions. We also knew that realistically the recommendation would be for the intentional 4K. I braced myself for this, having sobbed after hearing the options on the phone one day because I knew in my heart where Teddy would be placed. I psyched myself up on my run the morning of Teddy's IEP and felt comfortable with what his placement would be.

Yet, when the recommendation was made, I couldn't stop myself from crying. I thought I had almost managed to cover it up, wiping away a single tear nonchalantly, but then those tears kept coming. One of the therapists pulled my old move by quietly handing the box of Kleenex to me without judgement. I tried to joke saying, "I wasn't going to be that mom, but I guess I was anyways."

I could pretend that I was really disappointed because I wanted Teddy to remain at the same school with the same teacher (and AJ's teacher as well, who is great with him!) and most likely the same therapy team.

The reality is that, for me at least, it's really hard to hear that your child is so affected by his disability that he needs the most specialized instruction available. It's the same as when Teddy's teacher said it's so amazing to see Teddy walk and try to run across the gym chasing his peers. She said it's so cute that they wait for him to touch the wall before they run back across the gym, sharing it as a cute example of Teddy interacting with his peers. What I heard was that our son is so disabled that even all the other kids with disabilities accommodate our son.

And the fact is that none of this changes a damn thing about Teddy. He's the same adorable child who can disarm just about anyone with his megawatt smile and deep dimples. He's the one who amazes me when I realize the "mamama" that sounds like AJ said it came from Teddy's mouth. He's the one who still makes me do doubletakes when I see him walking with such relative ease and speed. He's an incredibly determined little boy who works so much harder than anyone else I personally know to do what he does with a remarkably cheerful attitude (unless we're short on sleep and refusing naps, which I'm not even going to touch today).

Seriously. That smile. Those dimples.

Nothing his teacher or support team said change any of this. And nothing they said was bad, mean or untrue about Teddy. It's just that hearing someone else point out reality, even in the kindest words, sometimes hits you hard ... because you live that reality and it's so familiar to you.

There is absolutely nothing bad about Teddy being in the intentional 4K. I know it's the best setting for him where he'll be able to make the most progress.

I guess I just need to find some superglue to keep him from ripping off my mask for my emotions time and time again.

Guilt

All parents feel guilty at some point, I think. Sometimes, it's probably warranted. And sometimes it's over things that are far beyond our control.

As it became clearer that Teddy wasn't a typical child, the guilt and worry kept creeping into my mind.

Was this because of my Crohns and medications I took during my pregnancy? I had followed my doctor's orders, which were even more conservative than with my first child. (I had even participated in a multi-year study following my first son's birth to check the possible effects of the medication.)

Maybe it was the fact that his umbilical cord was wrapped around his neck when he was born. Maybe we should have been more concerned that he was blue at birth and advocated or did something differently.

Or perhaps it was that moment when he tumbled out of a chair, and I learned he could indeed move his body that way instead of being a motionless baby. Or perhaps the time his big brother "helped" him out of the chair by pulling him down into the over-sized stuff animal that served as a landing pad that was never intended to actually be used.

Was there something we did wrong? Something we could have changed?

After getting a diagnosis, it alleviated pretty much all the guilt associated with how and why Teddy was Teddy. (Don't get me wrong - there's enough guilt for other things because I'm still human.) In many ways, it was freeing to know this was how God made Teddy. It wasn't my fault. I hadn't caused this. It wasn't my Remicaid infusions. It wasn't me failing as a mother by having his cord wrapped around his neck (although I realistically had no control over that). And it wasn't those few times he tumbled.

It was Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. It was a genetic mutation of the PIGN gene. It was how God made Teddy.

There's been so much that's been difficult to accept (process is the word I use most often), but this relief was almost instantaneous with the diagnosis. For that, I am grateful. I had been making progress on accepting that even if Teddy's symptoms were caused by something in the past, there was nothing that could be changed aside from doing what was best for him in the present. Still, the diagnosis brought full closure for me on that aspect and made it easier to accept the "What's next? What's the best we can do for him now and in the future?"