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.

I Love This Kid!

AJ had his first CCD class, which is the Catholic way to teach our children more about our faith and prepare for the sacraments. He wasn't too thrilled about the prospect of this lasting for 10 years (hey, he asked how long he had to go!). But he really enjoyed his first class, and I couldn't have been more proud of the conversation we had afterward.

He told me that he prayed for Finny because he wants his fish to feel better (since Finny is sick with disappearing fins) and one other thing that began with a T and ended with a Y. He said he prayed for Teddy, so I asked what he prayed for Teddy. His reply, "I prayed for God and Jesus to help Teddy talk and walk better." He continued to explain that it would be nice for Teddy to be able to talk without his talker because we don't really know what Teddy's vocalizations of "eh" mean. He added that he also prayed that Teddy wouldn't have any more seizures because AJ really didn't like the one last December where Teddy had to go to the emergency room and then Milwaukee.

Dang, kid. Those are pretty much my same exact prayers for Teddy.

Teddy's the little brother who's loved in a big way!

I Know Different

We've settled into our usual routines with Teddy acting completely like his happy, goofy self. AJ ran right to Teddy and held him tight for a long hug when they first saw each other, and Teddy kept trying to put AJ's arms around him for more hugs at bedtime that night.

Another person who really missed Teddy was his friend Max, who he sits by on the bus ride home. Apparently Max asked about Teddy every day, asking whether Teddy would be back Monday for sure and then whether it was already Monday. Those two crack me up, and I'm happy they have each other for entertainment on the bus.

This is short because I wrote novels each day last week. Someone shared this poem by Tricia Proefrock, and each part of it rings so true to me. 

I KNOW DIFFERENT

Dear mommy,

I have felt your tears, falling on my face. Someone else might think they are tears of sadness, because of what I can't do...I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return. I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures. Someone else might think you are ashamed of having a child like me...I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid...I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me. I know your body hurts, because I'm getting so big. I know that more than anything, you want to hear me say your name. And I know you worry that you aren't good enough, and that you will fail me...BUT I KNOW DIFFERENT MOMMY.

I know that even on your worst days, you will always be enough for me, and I will always love you more than you know. 

Joy to the World

“Joy does not simply happen to us. We have to choose joy and keep choosing it every day.” 

These words from Henri J.M. Nouwen are true for most people, yet interactions with Teddy would beg otherwise. When I came home from work today, his smile and excitement to see me exuded joy. When I look at the board of pictures of my children at work, I see AJ's weird faces for the camera and Teddy's unending joy.

Pure joy. And I'm not sure what that expression is on AJ's face.

 Teddy, simply put, lives joyfully. That's not to say that he doesn't experience frustrations or bad days. He does, without a doubt. He has moments of every day, some more than others, that are just plain miserable (many of which could be cured with a bit more sleep). But he is a joyful child. He finds joy in the little things, like his parents coming home from work, seeing his bus for school, seeing a friend, chasing his brother and especially doing all those sassy things that he knows he's not supposed to do like stand in the toilet.

Again, that smile radiates joy.

 As his mom, especially the past few weeks, I've really struggled to choose joy every day. There's a lot of anxiety, fear and a general feeling of blah that I attribute to our escapades at the ER and ICU. I recognize the incredible blessings of our lives, particularly that Teddy recovered incredibly well to his usual joyful self, and how fortunate we are. Yet I can't deny the past few weeks have been challenging, although I feel like yesterday was the start of the upswing in my pendulum. Normally my funks don't last this long, but then again, there was nothing normal about that seizure episode.

But this post isn't about me and my struggle to choose joy. It's about the fact that I recognize the joy in Teddy. His smile, his pure happiness when he looks at other people, makes their days brighter. We've often said that his smile, complete with those dimples, is one of his gifts.

All smile. No eyes.

 Which makes this quote from Pierre Teilhard de Chardin all the more fitting:

 “Joy is the infallible sign of the presence of God.”

Will He Walk?

For some reason, this past week, as we watched Teddy wander through the room, I asked my husband if there was a ever a time he believed Teddy would never walk. And he said yes, there was a period of time when he didn't believe Teddy would ever walk independently.

There were so many days at physical therapy that I just wanted to hear his therapist say, "Oh, I've seen kids with these tone issues, and he'll be able to walk independently just fine." Instead, I heard things like, "Our goal is to help Teddy learn how to use his gait trainer, so he can safely navigate his classroom when he gets to the school setting."

Still, there was one defining moment for me, and I don't recall exactly what it was ... It may have been as simple as Teddy cruising along furniture or walking holding one or two of our hands. I remember becoming confident that although it may take time, Teddy would learn to walk independently.

Now, as I watch him confidently wander around the house, never watching where he's going and moving with the grace of a drunk monkey, I'm in awe that we ever doubted he could walk. When I watch him pop up unassisted in the middle of the room, it still makes me smile because it's something he couldn't do a month and a half ago.

As I enjoy these accomplishments for him (and let's be honest ... for the long-term future of our backs and bodies as Teddy's parents), part of me wonders if speech could be the same way. The first babbling sounds we heard from Teddy were last April, right around Easter, and sounds from him have been sporadic since. He goes through periods where he is more vocal, but his babbling hasn't really progressed. School is working with Teddy to use buttons to ask for more snack or milk. We know of other children with the same diagnosis who use assistive technology to help them communicate. We know of some who use some sign language, and we have made half-hearted efforts with Teddy with signs. We also know of some children with Teddy's diagnosis who can speak at least some words.

Part of me wonders if one day I'll look back and think to myself that I was so silly for doubting Teddy could learn to speak actual words.

Then again, part of me fears that day will never come.

Romans 12:12

One of the harder things when Teddy doesn't sleep at night, aside from losing much needed sleep, is all the time it gives me to ponder things. About a year ago, I was consumed with fear, anger, frustration and a feeling of complete helplessness after one of Teddy's seizures. I couldn't fall back asleep after Teddy finally succumbed to sleep, so I was searching for something: answers, peace, the ability to fall asleep ...

When I was a child, I read the Bible cover to cover, underlined favorite passages and jotted down lists of verses that resonated with me. That night I couldn't sleep, I looked up all the verses I had written down as a child until I got to Romans 12:12.

That was where I found what I was looking for: guidance, hope and a bit of peace.

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

It's applicable to nearly every situation for me.

Worried about the future? Let my hope keep me joyful.

Beyond frustrated because Teddy is screaming not sleeping? Be patient in my troubles.

Fall while running and land in a bush? Pray to thank God I didn't land in a cactus. (True story. Happened in Zion National Park this month.)

Every time Teddy has a seizure that turns our world upside down all over again? All of the above.

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