Welcome to Elijahland

Wednesday, May 15, 2013

Peace and Light

One year ago, we welcomed a sweet baby boy into our hearts and arms.

We named him Oliver Luke.

Oliver, meaning olive tree (a symbol of peace) and Luke, meaning light. He has certainly lived up to his name, bringing so much peace and light into our lives.

Oliver's birth healed me in many ways. I remember his first cry and how relieved I was to hear his sweet song of health (and how I cried too at the sound of it). For a long time after Elijah was born I could barely say the word "birth" without crying and being fraught with anxiety. Oliver has allowed me to celebrate birth again, a priceless gift.

The past year has flown by as they tend to when you have a baby in your arms and then on your hip and then walking through your house. It's been a gift to be able to observe typical development, to watch things just happen without my constant positioning and therapy and intervention. These boys of ours remind us that it's a miracle any of us make it to adulthood able to eat, walk, talk, or breathe. Every life, regardless of ability, is a miracle from God and we feel so blessed by the gifts God has given us.

Little brother Oliver is a goofy, sweet, affectionate, independent guy. He's been walking for about a month now and adores his big brother. He really is a light in our lives, full of silliness and a sense of humor.

A year ago I could hardly imagine what it would be like to have another child. Today, I cannot fathom a world without Oliver in it.

Happy first birthday, Oliver. Mom, Dad, and Elijah love you so much.

Monday, May 13, 2013

Yes (No)

Communicating with Elijah is hard. That is probably an understatement.

A five and half year old who has no words is a child who gets frustrated a lot. And that's why Elijah's newest development is so ridiculously exciting. It opens up a whole new world of communication for all of us.

Elijah is starting to nod his head to tell us yes. And every once in a while he is shaking his head to tell us no.

It's pretty cool to be able to ask Elijah questions, stuff like...

"Did you have fun at school?" Elijah nods.

"Are you all done with supper?" Elijah nods.

"Do you want to go home?" Elijah nods.

"Do you want to listen to a different CD?" Elijah nods.

It's not perfect. There are times we'll ask Eli questions and he'll do nothing at all. And there are times when I think he means no - even when he nods yes. Sometimes we have to phrase the questions in a very specific manner, otherwise he seems confused. And at this point we can only ask him questions that we think the answer will be yes, as his no is emerging slowly and doesn't happen often.

I have had a few glimpses into what it would be like to have a yes/no conversation with Elijah and wanted to share them...

One time I was trying to take pictures of the boys (the pictures in this post). Oliver wiggled his way out of the chair, so I continued to take Elijah's picture. In an attempt to get Eli to smile, I asked him if he wanted me to sing the train song. He very appropriately shook his head no.

"Elijah, do you want me to take more pictures of you?" He nodded. Yes, he wanted more pictures, something I was more than happy to oblige.

And then yesterday, we had a little get-together for Oliver's first birthday (he'll be one this week!). That night after supper after all the guests were gone, Elijah came over to me at the dinner table and climbed in my lap. He was acting like he wanted to eat more (that kid is perpetually hungry). I asked him if he wanted a chip. He shook his head no. That one surprised me because he loves the crunch of a chip and I've never known him to turn one down.

So we asked a follow-up question: "Do you want a cupcake?" He nodded. Of course! He wanted the cupcake we had promised him earlier in the day.

We've got a ways to go before we'll be able to ask Elijah any yes/no question and expect an accurate (what he actually means) response. But, for now, it's pretty incredible to be able to get him to answer yes for many questions on a daily basis. And I'm happy about the no's that are few and far between.

I'm looking forward to the yes/no conversations we will have in the future and the things we will learn about him in the process. Am I excited? Oh, YES!

Tuesday, May 7, 2013

Enough

In an attempt to organize my house, I've been rummaging through drawers I haven't looked in for awhile. I suppose the fact that Oliver digs through everything and tries to eat anything he can get his hands on is forcing me to try to organize our life more (and move almost everything we own out of reach).

The other day, I pulled out some letters I'd written long ago when Elijah was probably two-years-old. The letters were carefully drawn on 8 1/2 by 11 inch card stock, the lines straight and curved and drawn in black permanent marker. Upper case on one side and lowercase on the other, I'd placed all 26 letters into sheet protecters.

When I saw the letters sitting forgotten in the drawer, I cried.

I remembered writing them out and then subsequently trying to teach Elijah the alphabet. I'd sit down with toddler Elijah, excited to teach him and he wouldn't look. He'd stay with me for mere seconds and then struggle to get away to go do something else.

You tried to teach him his letters and failed, the letters said to me.

The weight of that failure suffocates me in that moment, the forgotten letters taunting me. "Have I done enough?" I will ask myself. The word will repeat often in my head. Enough. Enough. Enough. Have I done enough? Am I doing enough?

I will think of all the times I could've worked on Elijah's self-feeding, but didn't. The times I sat silent instead of talking to him. The times I could have shoved carefully written letters in his face. The times I could have done more.

The older Elijah gets the more I realize that is simply impossible to have done enough. Nothing will be enough. Nothing we do will make his brain injury disappear, as hard as we try to help him overcome his challenges. I'm not superwoman. I'm not God. I can't heal a hurt brain.

For the past almost three years, Elijah has done approximately 25-30 hours of ABA therapy a week. He has school. He also does extra occupational and speech therapy. We just started music therapy. We're looking into doing hippotherapy with him (the therapeutic use of horses). It's a full-time schedule. It is more than enough.

And then I wonder if we are doing enough of the right thing. Perhaps we should be doing something else. Enough. Too much? Enough. We can only do so much; it's never enough.

And so, as the years pass, the more I realize that we need to live our lives. It's okay that I let ABA therapists do the bulk of therapy. I'm very involved in his therapy and what it looks like of course, but it's okay to just be mom sometimes. It's okay.

We love Elijah fiercely. We work with him when we can. We keep him busy learning in therapy. We rough house and throw him on the couch. We run outside. We kiss and hug (when he'll let us). We feed him and continue to encourage him to feed himself. We dance. We try our best. We accept Elijah for who he is. And it is enough. It is.

Thursday, January 31, 2013

One Bite at a Time

Oh, the coordination involved in feeding oneself!

Most of us don't think about all of the movements involved in getting food from the table to our tummies (sometimes I wish I gave it more thought, but that's a story for another day!). We move our hands, our arms, our tongue, our lips. It truly is a full body experience. It's difficult for Elijah to move his arms, to use his hands and to control his mouth and tongue; it is difficult for Elijah to eat.

We've had an amazing occupational therapist coming to our house to help Elijah with his oral motor and fine motor skills during lunch once a week for about the past year. He has improved so much in that time.

On Wednesday Elijah fed most of his lunch to himself in occupational therapy and we were beyond proud. His OT and I sat there with mouths dropped open and eyes beaming. He was doing it.

The problem is, Elijah often won't do things for me that he will do for therapists. It's understandable because I'm his mom. Would you want to do something incredibly hard in order to eat if you were super hungry? Yeah, me neither. Especially when you know that the people who love you most won't let you starve.

Tonight, I offered Elijah his fork and he so politely handed it back to me (that's a change too, in the past it would have been tossed to the floor). I decided to make a deal with our boy.

"Elijah, mommy will feed you two bites and then you need to at least try to take a bite on your own," I told him. I talked about how grown up he is getting.

And so I fed him. And so Elijah also fed himself.

This is a big deal. Not only because he fed himself, but because he clearly understood me. I've been noticing this a lot more lately. He grumbled at me at first, continued to give me back the fork and whined that I was making him try when for so long now we've just fed him. In the past, me trying to get Elijah to feed himself would often escalate into full blown fury. I had to be careful how I approached self-feeding or mealtimes would be miserable (and they often are anyway for other issues). A little whining is a step in the right direction.

I'm well aware that we have a long way to go until he's completely independent in the feeding department and that there will be days when he completely needs our help. Some foods he simply can't do on his own and that's okay. Even a few bites is a big deal, especially since he did it for me and not someone else. A BIG DEAL. He's doing it and we'll keep pushing.

Getting the fork to his mouth

Great lip closure on his fork!

Lips closed and chewing

I may have shed a few happy tears tonight during supper. I am so not going on his dates with him.

Oh, and little brother is learning to eat too!

Monday, December 31, 2012

Two Sleds: Firsts in the Snow

Winter was my favorite season as a kid. It's not really my favorite season anymore (driving and bundling up kids and dealing with car-seats, need I say more?), but there is something so magical about the first big snow of the season - and something amazing about watching our kids experiencing it.

Elijah wasn't up for posing for a picture

We got over a foot of snow on the 9th of December and we were so excited to take the boys out into our backyard winter wonderland.

Elijah remembered the fun times he's had in previous winters and was excited go sledding down our hill.

For Oliver, this was his first experience with snow and cold. He had a serious look on his face the entire time we were outside; when I would ask him about the snow he would give me a big smile. I think he apprehensively approved.

They were having fun, really!

A happy first for Eli this year, too. He got to the bottom of the hill sledding with dad and signed "more" for more sledding. We're so proud that he is communicating with us more and that he's using his skills in various locales.