Christian's Journey

The theme of the week is construction.

Which reminds me...I have to find a yellow shirt for Christian because tomorrow is "wear yellow" day at preschool.

I seriously just got up to go look for one before I forget and remember tomorrow during the morning rush five minutes before we have to be at school.

I found one. It's a Spongebob muscle tee. Arizona is warm but not muscle tee warm right now so we'll put a long sleeve shirt underneath to rock that muscle tee out tomorrow.

These are the kinds of decisions I'm making for Christian this week. We're not talking about hips, surgeries, sicknesses, or medications. We're talking about construction week and sporting yellow.

It feels pretty damn good, ladies and gentlemen.

It was Christian's first day of real preschool. But didn't he already start school? -you ask. Yes. There are two different classrooms and I wrote about the differences here.

We walked through the door of Christian's new classroom and his teacher was really excited for him. She greeted him right away. Another little boy came up to Christian, came close to his face and told him his name, then ran away to play. It was time for library and everyone lined up. Christian included.

He got to ride a tractor with his teacher with it being construction week and all. And he made it through the day, happily.

He likes school. Scratch that. He loves school.

How can I tell? His OT at school just told me the first time she ever heard him cry was yesterday when she accidentally tripped over his foot and scared him.

He cries and whines all the time at home. And it was the first time she had ever heard him cry. Yeah, pretty sure he loves school.

There was a time where what I wanted was for Christian to come back to me. And while wishing and praying for that boy to surface, I found another little boy along the way. I wrote about my two sons here.

While I still identify with those feeling and I still relate with those who've lost children, I am enjoying, celebrating, and embracing my on.

This one boy that I've found is quite the little man. He holds mysteries and he always keeps us wondering how to get to them. He knows his Momma. He knows his home. He knows what he likes and he is very adamant about what he doesn't like.

Sometimes I feel guilty for underestimating him. I guess underestimating isn't the right word. More like not taking into consideration that Christian might want to be around other three year olds. What if he doesn't mind not being able to run with them. Maybe he's just happy watching them and listening to them, absorbing the crazy energy and chaos that is being three.

Maybe he has things to say. How could I have not considered that? I just assumed he didn't understand. Maybe he understands everything, he just has a hard time communicating it.

He is full of mysteries yet to be discovered but I've found him, my boy. He was there all along. And as time goes by, more and more is uncovered and he's emerging as the little boy that God needs him to be.

We found him. And he's wearing yellow tomorrow.

Some may think Christian can't communicate or that he communicates very little. Actually, Christian is very good at communicating when he's mad, upset, pissed, hurt, aggrivated, content, comfortable, uncomfortable, and happy as far as Christian shows happiness. He has different cries and sounds that have different degrees of irritability. Make no mistake, if he's mad, you'll know about it.

We have taken the next step and decided to experiment with talkers. A talker is a device that we can program that "talks" for the child.

When considering a talker, I had doubts. Like, would he respond? What if he didn't respond? Does that mean he has nothing to say? What if he has a lot to say but his body won't allow him to communicate?

So I went into this talker business just to try it out and give him the opportunity. I didn't even know where to start. Our OT brought us a few switch activated toys and a talker with two buttons and placeholders for pictures on those buttons so we could help him see each button and make choices between the two buttons.

I didn't put much weight into all of it, after all, we were just trying things out. I didn't stand by watching his every move. I really didn't even know what to do with it and didn't mess with it for the first two weeks we had it. This may not seem very optimistic but you learn to be gaurded when dealing with these kinds of devices. I've learned over and over that what may work for one kid, might not be for Christian. And that's okay. So we were just playing around with the idea of a talker.

Little did I know, Christian would catch on quickly and show us that maybe he does have something to say.

I won't go into the switch activated toys quite yet. I'm saving that for another post. I decided to try out the talker. The talker has two big square buttons, one on the left and one on the right. Each button is voice recordable. At first I recorded the right side with the Happy Birthday song because Christian seems to really like that song. On the left side I recorded, "No, Lola!"

Christian seemed to catch on, whether by accident or on purpose, and kept hitting the Happy Birthday song. So I took his lead and forged on to the next step. I recorded "Ma-ma" on the right button and taped a picture of me and on the left button I recorded, "Dad-dy," and taped a picture of Manny. Then, hand over hand, I helped Christian push each button over and over on each side so he could see what each button did. My goal was to leave little footprints on his brain that would lead to cause and effect and him learning to use the talker to communicate. But only if he was up for it.

We played around with this option and then I kind of walked away for something and heard it.

"Ma-ma."

He did it on his own. Whether by accident or on purpose...he did it. Footprints.

Then he did it for his OT. He hit the Ma-ma button on the right when I walked away to do laundrey.

So what's a Mama to do?! Well, every time he hits the Ma-ma button, I run back to him so he sees that when he hits that button, Mama comes runnin'.

Now, I have a ton of annoying video I want to share. I'm very proud of these videos. But I should let you know that it is all very subtle. Some of his movement might even look accidental. You have to listen very carefully (not to me, I'm loud and annoying), you have to watch very carefully (sorry, it's dark in my house), and you have to ignore the mess that is my house. Mmmkay?

Let's begin.

This video is when Christian kept hitting the Daddy button. It's an example of how we are trying to teach him what each button does.




Here is more video teaching him what the buttons do. In each video watch him use his right and his left crossing over to each button, not just hitting the closest button to each corresponding hand.




These videos are longer. Hang in there. These are the videos I've caught where when I leave, he seeks out the Mama button.







After a while I thought it might be a little mean to leave the Daddy button active if Daddy was at work and couldn't come to him if he called. So I changed it to "Toys." Then I put some toys on his tray. This ended up being my favorite reaction and video.




This one happened almost instantaneously. I showed him what the button did. I showed him his toys. I put them down in front of him. And by the time I could pick up the camera, he had already knocked over his toys once and hit the toys button.

So there you have it. It's a start. I have to say that once I saw Christian purposely using the buttons, I felt bad taking them away from him like it was taking away his voice or something.

Even if every single move was an accident (although, knowing Christian, I believe most of that was intentional), the talker is a very good tool to teach cause and effect. And it seems to motivate Christian to reach and move his arms, which has been a challenge in the seated position in the past. The alternative would be that he just sits there and does nothing, which he has also done in the past. But not with the talker. So we'll see where this goes.

We're leaving footprints, baby.

In first aid and triage, the walking wounded are injured persons who are of a relatively low priority. These patients are conscious and breathing and usually have only relatively minor injuries; thus they are capable of walking. Depending on the resources available, and the abilities of the injured persons, these people may sometimes be used to assist treatment of more seriously injured patients, or assist with other tasks. - Wikipedia

I was reading a review about a new movie coming out about a family grieving over loosing their husband and father to 9/11. The review referred to the boy in the story as the Walking Wounded.


Walking wounded.

Such a perfectly simple description of those who have endured loss, pain, and grief.

So I googled it.

...conscious and breathing...capable of walking...

I write a lot about intentionally seeking out joy and happiness and it really being a choice in life. In our lives we've made a conscious effort to do this for our sanity and the happiness and survival of our family.

When the accident first happened with Christian, I mistakenly thought things would gradually just get better and better. I had sad days, but I was certain that eventually they'd go away.

I'd have rough days, very emotional weeks, and then I'd be over it. Happy again. Rough days were behind me and I was forward, full steam ahead.

Then out of nowhere, I was sad again. It would be set off by a picture I had never seen of Christian as a baby, happy and wide eyed. It could be for no reason at all and I was right back where I was in the beginning - broken hearted and just...well, broken.

It's called grief. And if I take myself and my emotions out of the equation, it is quite fascinating how this little bastard works.

It weaves itself in and out of our lives, piercing everything it touches. It makes us feel awful, it makes us feel validated, it makes us feel cleansed. It wraps itself around our old family photos, and sits heavy on our hearts when it is quiet and we're alone.

This kind of grieving - the grieving of a special needs parent - it comes in what I can only describe as levels.

When we left the hospital, as I said, I thought things would just continue to improve and improve and improve. Maybe Christian would be slightly delayed. But he'd catch up, right?

Levels.

I've learned from other parents. I've seen their grief. And it, too, is in levels. Half way between life and death.

...He's not smiling...She doesn't even move...He has a trache...He has pneumonia and he's in the hospital again...surgery? again?...He won't stop crying...She won't sleep...She throws fits...He has neurostorms...She has seizures...medications aren't working...We have to meet with the palliative care team...we have to keep him comfortable until the end...He doesn't like to be touched...He can't see...She doesn't talk, just screams...Does he even know who I am?...God, just let him make it through the night...Why are other children doing better than my child?...We need miracles...

Levels of grief.

Level 1 - We think there may be seizures. Level 2 - Medications aren't working. Level 3 - Seizures are intractable.

Level 1 - He probably won't walk. Level 2 - Not enough weight baring. Level 3 - Bone quality is deteriorating. Level 4 - Hairline fractures. Level 5 - Dislocated hips. Level 6 - Painful surgery.

Each level is a new found pile of grief to step in.

And they come in little droplets or they come in waves. Grief hides in things like cartoon characters you're child should be obsessed with. It's waiting in thoughts of grandchildren that will never be. It's all over your spouse's face when he talks about playing catch someday with his son, or his dreams of it, anyway. It's there. And really never, ever goes away.

When I hear the stories of mothers and fathers of children who've passed, I feel their grief. It goes beyond the polite, "I can't even imagine..." Because I can, and I do, and I can feel it. It's a heightened perception of pain that I now possess and part of me is thankful for that. The other part of me wants to give it back.

Luckily, grief doesn't stick around for too long these days. But all too often I meet or hear about families who are just at Level 1. And I'm sad for them and their long journey ahead.

The movie review called the little boy the Walking Wounded. But the most important part was when he said, "...But he is still walking."

We're still walking.

We visited Christian's orthopedist. It was as expected. Not great. But not the end of the world.

The verdict:




Christian has about a 45 degree curve to the right. It's at the bottom of his spine so it doesn't threaten any major organs at this point. We're working on stretching that right side out at the hip.

First, I have to say we are blessed with an excellent ortho doctor. He is kind, knowledgeable, and conservative with his recommendations. Having a doctor like him makes it easier to handle news like this and make a plan.

He said regarding Christian's hips, we can let the left hip go ahead and fall out of socket or we can operate and put the hip back in the socket. He said he has had patients do both and has had an equal amount of success and failure with both options. We are going to take another look in three months. If there will be any surgery, it will be on summer break.

As for the spine, at this point the doctor wasn't too concerned about it. If it gets any worse we might have to consider spine straightening surgery, but we're now on alert that we really have to be diligent in stretching and straightening that spine as much as possible. He didn't suggest a brace and actually discouraged its use, but I'm not sold on that. I'm still going to research the option.

We both agree that at this point, unless something is causing pain, we are hesitant to plan any surgeries. We'll reconvene in three months and come up with a better game plan.

And my feelings on the subject...I was fine all day, really. I hyped myself up for an appointment with horrendous results. I don't know what "horrendous results" would be - an arm where a leg should be? I just psyched myself out. The appointment wasn't horrible and the results were nothing I couldn't see on my own or anything I didn't already know.

I still need to process this. I know as my medical mind is put to bed, the mommy mind and heart emerges. Then it's different. Then it stings.

But it's still the same old Christian. It doesn't change who he is right now, but I firmly believe that knowledge is power and knowing is freeing. We now know what we're dealing with and we can move forward.

We'll have some big decisions to make in the future, I'm sure. This is part of Christian's life.

But tonight we decided to focus on the beautiful head of curls he's growing.