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I Love Him So Much It Hurts

One of the hardest parts of being Elijah's mom (or dad) is this: Not knowing what is going on in his head - especially when he's sad and we don't know why. I wrote the following a couple of weeks ago, but never finished it. I thought I'd share it now as it still applies to me and I thought maybe another mom (or dad) might relate.

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We're driving home from school and Elijah starts sobbing. I have no idea why. I have no way to get the information from him, no way to crawl inside of his brain to scoop out the information that I want to know - that I so desperately need to know. And even worse is the knowledge of this simple fact: In spite of years of therapy, Elijah's communication skills are still quite limited and he has no way to let me know what he's thinking.

Elijah sobs and we get home and he cries some more. I bring the boys inside and I help Elijah get off his boots and hat and mittens. I help Oliver too. Our winter clothes sit laying in piles as I try to contain my two boys who both need me so much. Elijah is still crying and pulling at my hand while Oliver repeats his "mom-mom" refrain while pulling on my leg.

All I want to do is take off my stupid boots.

I turn on Elijah's music and that satisfies him some, but he's still not happy and I don't know why. I'm not happy either.

It's not long before I'm sobbing too; the heartbreak is just too much. I can't handle his sadness, his tears. The possible reasons for his unhappiness scroll through my mind like rolling credits...did something bad happen at school? Does he hate coming home? Does he want a different song? Is his brother bothering him? Is he not feeling well? Does he want to watch TV? The pressure weighs down on me, squeezing my heart in a vise. I love him so much it hurts.

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The Impostor

The scene: This morning at a Caribou Coffee drive-thru...

As I pulled up to the window, the cashier - an older grandfatherly gentleman - started to make small-talk.

"How are you enjoying this spring weather?" he said, joking about the temps in the teens.

We talked bout how it feels warm today, compared to the negatives we have been experiencing. We laughed about how it's all relative. I complained about having to bundle up my two boys in the cold.

"Oh, how old are they?" he asked.

"I have a six-year-old and a one and a half year old," I told him and he went to retrieve my coffee.

"Oh, so you did it like I did," he said, handing me my warm cup. "My kids are about five years apart."

And then he added, "Less squabbling that way."

And I smiled and nodded and said, "yep" and drove away.

Except, I have no idea what he's talking about. Yes, my kids are almost five years apart, but they aren't really five years apart. They're apart in years, but they're close in development. They're twins and they're a million years apart at the same time. It's complicated.

Yes, Elijah is the big brother, but in some ways he's the little brother. There are things that Oliver started to do at a few months old that Elijah still can't do. And yet, Elijah IS the big brother in every sense of the word - bigger in size and in maturity. He gets annoyed at his little brother as any big brother does.

There isn't less squabbling. There is a lot of pushing and hitting - mostly from Elijah to his little brother. Much of my time with our boys is spent trying to keep them safe from each other. There is a lot of squabbling.

So, sometimes I feel like an impostor. It isn't written on my forehead that I have a child with special needs. People don't automatically know that my parenting life is a little different. My cashier didn't know that I didn't necessarily want to wait five years before having our second child. And, really, it doesn't matter.  But, sometimes in situations like a drive-thru where I don't have the time or the energy to explain my situation, I can feel a little bit like an impostor.

I'm not an impostor, though. I'm just me. A wife to Andy and a mom to two incredible boys.

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Grin

Our big kid's front tooth has been wiggling for awhile.

And tonight Andy was able to able to yank it out.

He really is growing up so, so fast. Didn't he just get those baby teeth?

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Acceptance

I have had so much anxiety about sending Elijah to school. The worst was in August before school had even started. I was so worried for him. Worried about bullying. Worried he wouldn't get what he needs. Worried about his inability to tell me if things weren't going well. Just plain worried.

Elijah was in a self-contained special-ed classroom for the past three years, but in kindergarten he's in a regular classroom. He does have a special education teacher and classroom too, but he's in the main classroom as much a possible.

This idea of mainstreaming was both exhilarating and terrifying to me. Would the other "typical" kids accept Elijah? Would they be nice? Is this even going to work? I get reports on what Elijah does at school, but I've often wondered... how are the other kids reacting to him? Is he accepted? Do they like him?

Every day when I get home from picking Elijah up from school, I eagerly open his backpack to read his daily report. Sometimes there's little tidbits such as: "Elijah read with a classmate today" or "Elijah played Candyland with a friend." I tingle with excitement at these notes. A friend.

Lately there have been notes sent home in Elijah's folder, like the picture at the top of this post. And this sweet note from another boy in his class...

"I like Elijah"

When we got home today, I found that Elijah had received two notes from a girl in his class. The first one was drawn yesterday...

Translation: "I love Elijah and my whole class! Elijah from Elsie"

Close-up of Elijah. I love the details of his glasses and his high-top shoes with long laces. 

The second note was drawn today

Translation: "I love you because you are my favorite. Do you like blue, do you?"

Close-up of the drawing - Elijah and Elsie with hearts

Holding these pages in my hands, I let the tears flow down my cheeks. Elijah is a kindergartner. Elijah is loved. He is accepted. He is exactly where he should be. We hear so much about bullying and mean kids - what about stories such as these? What about big puffy hearts and love? What about this girl's ability to see past Elijah's disabilities to see his awesomeness? 

I have so much hope for the future. 

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Big Kid

Elijah started kindergarten today.

How did this kid get to be so big?

He did great on his first day and we're excited to see what this year will bring.

And potty training? He's still being a rock star. He went 7 times on day two, no accidents. Day three (today) he went 7 times again with two accidents when we left the house. He really is getting this thing! Still shouting on that rooftop!

When I told him to "give me a smile." :)

Elijah is getting to be such a big kid.

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From the Rooftops

This needs to be shouted from the rooftops:

Elijah peed on the toilet six times today.

Six times, you guys. And no accidents (other than the wet diaper he woke up with this morning). That's a lot.

Oh, I used to say to myself I'd never post about potty usage. But that, my friends, has been thrown out the window. This is a hard-won victory for Elijah. This is a long time coming. This is a battle we've been waging for a while now. I am on the roof shouting for joy, praising God, doing a little jig. Can you hear us? We're been on the rooftop all day.

He's getting it! He's getting it! He's getting it! It's like something clicked for Elijah today.

I think Elijah has realized how awesome it is to use the bathroom (and how great it is that he gets to wash his hands every single time he goes, a huge reinforcer for him). And we can only hope that this continues tomorrow and the day after and so on...

Happy about washing his hands

Our six year old used the bathroom six times today. Six is my new favorite number.

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The Moments Before

Nine years ago I waited for the moment that would change my life forever.

My hair was twisted onto the top of my head and I was wearing the most beautiful dress I had ever owned. I paced around the basement of the historic theater waiting and ready. It was only minutes until I would walk down the aisle and I couldn't wait.

Moments before walking down the aisle...

In those moments I thought about how sure I was about marrying Andy, how I didn't have even one doubt about marrying him. My feet definitely weren't cold. My nervousness was more in the details: Did I look okay? Did I forget anything? Was my planning sufficient? Would the day go the way we wanted it to? But Andy?...I was sure about him and spending our life together.

Mr. and Mrs!

I thought about how happy I was and what an awesome feeling it was to be getting married. And I pondered what our life would hold. I remember thinking about how we would definitely come upon hard times - as everyone does in life, but that we'd get through it together. Pondering the future, thoughts of job troubles or issues with our health crossed my mind. Never did I consider that something would happen to one of our children.

Nine years later, remembering those thoughts in the last moments of my single life, I'm filled with joy and sadness. We didn't know what our future held and it's different than I'd imagined. Harder, yes, but also more wonderful too.

The last nine years with Andy by my side have been amazing. When I think back to our wedding, I smile. It will always be one of my favorite days ever. We had so much fun!

And when I think ahead, I smile. There is so much of our story yet to be written. So many fun times still ahead.

Us on the Fourth of July

Happy anniversary to my Andy. You are the best husband to me and father to our boys. I am one blessed gal to be your Mrs.

It's fun to look back, but looking ahead is even better.

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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.

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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.

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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! 

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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.

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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!

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