Thursday, May 23, 2013

Update on the Boys: Our First Video Blog

The boys and I made a little video while Daddy was working. These kids crack me up.

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


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.
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