Friday, September 4, 2015

The Unseen Disability, and The Hike.

"To believe I walk alone

Is a lie that I’ve been told

So let your heart hold fast

For this soon shall pass

Like the high tide takes the sand

At the bitter end

Salt and liquid blend

From the corner of my eye

All the miles wrecked

Every broken step

Always searching always blind

Never fear, No Never fear

So let your heart hold fast

For this soon shall pass

There's another hill ahead"

--Let Your Heart Hold Fast

Last year, on an overcast but warm afternoon in February, the front door of the Grey House swung open, then closed with more force than usual.  Caleb was home from school.

"Hey buddy, how was the hike?"  I asked.  Today was the 4th grade hike he'd been looking forward to.

"It was HARD.  I'm never going hiking again!"  he replied, with a lot of emotion behind his words.

"What happened?"  I asked, but wasn't too worried.  Caleb is an emotional kid, and sometimes just needs to get the big emotions out by venting, then can see through them a little more clearly.

"It just was hard, and I hated it.  And I'm never going again!"  he repeated, yelling this time.  I asked a couple more questions but he still didn't open up, so I dropped the subject and moved on.  Today was Leah's 6th birthday, and we were going to go out to celebrate.  I asked Caleb to get his homework done and clean his room, then get ready to go to the restaurant.

Normally he would react well to going to his favorite place to eat, it would be a motivator to get him to stay on task and move quickly.  Not today.  His foul mood continued and affected anyone who crossed his path.  He complained with the small things I asked him to do, he purposely looked for ways to bug his sisters, and he wasn't just teasing Leah--he was picking on her and criticizing her.

Each time he did, I stopped him, telling him to change his behavior or earn a consequence.  When he continued, I pulled him aside, reminding him of how he had treated Leah last year on her birthday.  He had been so kind to her, and so thoughtful and fun, and it had meant the world to her.  I asked him to try harder to remember this is the one day a year that's just for her.  I also asked him if anything else was wrong--did something happen with his friends?  Did he do poorly on his spelling test?  Was he tired?  He said "No" to all of these.

In the past when Caleb has treated her this way, we've been able to trace it back to an experience that's recently happened that has made him feel really insecure or embarrassed.  He takes those insecurities out on her until we can get to the root of the problem and talk about what is really bugging him.

"Okay, well  I'm here to talk with you if you want me to.  But if you don't want to that's fine, but we do not deserve to be treated the way you're treating us.  If there isn't anything else wrong then your behavior needs to change.  Now."  I said firmly.

We all got in the van and drove to the restaurant.  While we were being seated, Caleb refused to sit by Leah, saying she always had to sit next to him.  The look on Leah's face was enough, she was devastated.  I gave him the stink eye and told him with a low voice to sit down and knock it off.  He stayed quiet, but inched over to the edge of his chair.

We ordered our food and while waiting for it, began the tradition we have on birthdays, to go around the table and everyone says what they love about the person we're celebrating.  We went around, and then it came time for Caleb's turn.  He gave a half-hearted, generic answer, and wouldn't look at Leah when he said it.  I watched him inch away from her again.  That was IT.

Ben was talking with the girls when I leaned over the table and with my voice two octaves lower than normal said,

"One more thing, Caleb.  If you do or say one more unkind thing to your sister on her birthday, you and I are taking Dad's car and you're going home to bed.  I have been as patient as I can be.  If this weren't her birthday, I would not feel so upset right now.  But she does NOT deserve this and you are not stopping.  When you act this way and can't control it, you're telling me you're too tired and you just need to go to bed."


He looked at me from across the table, and his face just crumpled.   Tears spilled onto his cheeks and he began to sob.

"Buddy, come here,"  I said with my voice softened.  He walked around the table and stood next to me.  "What is it?  Please tell me, I'm here for you."

And then it all came tumbling out, in between sobs.

"The hike was so hard, Mom.  SO hard.  My legs ached and kept shaking so hard that I kept falling, and my group left me--the only one that stayed with me was the mom of one of the kids, because she felt bad for me.  I was so slow, I could barely make it.  I was the last kid up the mountain.  By the time I got to where we were supposed to eat lunch, everyone was already eating and most of them were finished.  I was so tired and wanted to turn around but I couldn't.  I fell over and over again, even wearing my good shoes.  It was so embarrassing, and I felt so stupid and slow."

My heart broke.  As he cried, I did too.  I hugged him tightly, saying,

"Oh Caleb, I am so sorry and am so glad you told me.  I had no idea.  I don't know why your group didn't stay with you, and I wish they had.  But more than anything?  I am SO proud of you.  So, so proud.  (I could barely speak because I was crying so hard at this point.) The other kids don't know what it feels like to be in your body, with your muscles.  They don't know what it takes for you to make it up that mountain.  But I do, and your dad does.  We know the tightness of your muscles that makes it so much more difficult, and that your legs tremble when they're working hard.  We know how far you've come, and how you have to work twice as hard to keep up with others.

The thing is?  You don't look different.  And while that's a blessing most days, today made things more lonely for you.  If you had crutches, or a wheelchair, or were still wearing the orthotic casts you used to have to wear, people would know, because they would be able to see the difference.  And I'm guessing that if the kids in your group knew, then they would have stayed with you.

But the fact that you didn't quit--that you finished, you got up to the top of that mountain and you made it all the way back down, it proves again to me just how strong you are on the inside, regardless of your body's strength on the outside.  You did it, without the help of anyone.  Just you and God, getting up that mountain together.  

I know today feels like it was an awful day (Caleb nodding his head fiercely), but I have a feeling that you're going to look back on this day as one that was a turning point for you.  One where you can feel proud of not quitting, regardless of how hard it was.  You have yet again made me feel so grateful, and lucky, and blessed, and proud to be YOUR mom."

I held him while he cried for another minute, then calmed down.  The rest of the night he was back to his normal happy self and treated Leah amazing.

Watching his tears fall in the restaurant, I found myself in a strange place as a mother of a kid with an almost unseen disability.  For over two full years, Caleb's disability was obvious.  But once he learned to walk and his seizures stopped, he just kept moving forward.  He's on the small side still, but unless you look closely or know what you're looking for, you can't see his struggle.  Physical therapists spot it right away and ask, but other than that, most are surprised to find out he has Cerebral Palsy.  I have been amazed at how his body has grown, and how he has compensated from his earlier days.  I've been grateful he hasn't had to live life in casts, or with his walker.  But with this hike, I realized I was almost wishing he did look different, and stand out in some way, so others would know and be more sensitive to it.  Then I caught myself--what kind of a mother wishes for their kid to have more challenges than they already do??  

After we were home and the kids were in bed, I told Ben about Caleb's hike.  As I told him, I could feel the Mama Bear in me rising.  I had purposely written on Caleb's consent form for the hike that he has CP--even though his teacher already knew that, I wanted to give her a reminder.  I wrote that he tired easily and had less endurance than the other kids his age.  Why didn't she give him a hiking buddy?  Why wasn't there more supervision over the groups staying together?  Why didn't they start out with the slowest kids in the front, like they do in Boy Scouts?  I wanted to protect him from feeling the way he had that day, but I couldn't--it had already happened.  So getting angry seemed to be the best secondary option.  I wanted to write her an email that night, giving her my very strong opinion of disapproval at the way my son had been treated.

From the time we first knew something was wrong with Caleb, I worried about moments just like this one.  I did not know how I could bear having him hurt, or made fun of, or left behind.  I wanted to protect him from any heartache.  A few years ago, I realized that if I did protect him from all of it, I was holding him back from the opportunity to grow.  I knew the best thing I could do for him was to let him fall and teach him how to get back up, and support him by being there for him, loving him, and teaching him how to love himself.  

I believe every moment--good and bad--is a teaching opportunity when it comes to my kids.  And I know my son.  He was born with a fire in his belly, a big fun personality, and a spirited, competitive side.  He was also born with a body that has set limits on what he can do, so his spirit and his body are in a constant state of battle with each other.  The problem is, he's so competitive with himself that when there is a physical feat standing in his way, he just wants to avoid it all together.  If he can't physically be where he pictures in his mind he should be, or if he's set up to compete one-on-one against someone bigger/stronger, he doesn't want to try.  We have been through this many times.

If he's on a team, he'll go for it because the spotlight isn't on him.  But if he could potentially fail on his own, or look slow or weak--then he digs his feet in and refuses to budge.  Ben and I have had to learn how to navigate this.  We are still learning.  We want to work within his limits and be sensitive to them, while also pushing him to just do the best he can do and not give up.

I didn't send the email.  Instead I decided to sit with all of this for a couple of days and see how I felt after the weekend was over.  The more I thought about this hike, the more important I felt mine and Ben's reaction to it was.  We could either make this a big Victim moment for Caleb, or a big Victory moment.  If I really believed the words I had told him--how proud I was of him, then I wanted to focus on that.  I wanted this hike to be known as a victory.  The Mama Bear inside calmed down, and my anger and protectiveness melted away.  I did want to mention it to his teacher, but more to help her be aware of what had happened, so that maybe they could do things differently for next year.

We've talked about the hike, since that day.  We focus on the getting up part, not the falling.  We focus on the finish line, not the part where he was left by his peers who didn't know what he was experiencing.  We focus on the courage it takes to keep going, one foot in front of the other up the mountain, driven by this God-given gift of his big personality that pushes his tight, but weak muscles to move forward.

And every dang time I talk to him about it, I cry.

I am so grateful I get to be this amazing boy's mom, and watch him learn how to pick himself back up, focus on the victories, and keep going.