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Saturday, October 26, 2013

Just fine.

Some people believe life is made up of moments that define your life. There is a before and after that begins and ends chapters in our life.

Before I had my son...

After I was married...

Before I had cancer...

After the war...

I remember the moment we were in the hospital when Christian was just over his worst moment. It was just after the first twenty-four hours, I think. He was in the worst room. And what I mean by that is he was in the room where the worst cases go. It has the most room for the most doctors and the most nurses.

There was a nurse who cared for Christian and as we were grasping for any kind of light and hope she cared for him with a smile on her face. I don't remember what we were talking about because I was careful not to ask what professionals thought of him as I already knew what they'd say. But I distinctly remember her saying, "He's going to be okay. He's going to be just fine."

At the time, I needed it. But thinking back now I think that was really ballsy of her. I mean it was sweet but how did she know he would be okay? And what was her definition of okay? Was she just saying that to make me feel better? Don't registered nurses know better than to say something like that?

I've thought about her over the last four years and I think she was right.

There was another moment that happened recently. Christian was given his first award. He was one of the only two kids in his class to get the special award of academic achievement. The teacher announced that he was a good role model in class and had adapted really well so far this year. The principal handed him his award during the ceremony.

It was a blurry moment. But it was a moment. 

You can imagine how proud I was of him. How far has this kid come?! Never could anyone have guessed that this child lying lifeless in the worst hospital room on the floor would be receiving an award four years later. I believed on pure and blind faith but to picture it in its entirety was just...just...something I couldn't ever picture! 

She said he would be just fine. And she was right. Just fine looks a lot different than what I thought it would but it doesn't take away the fact that he ended up being just fine in his own way. I don't know if that nurse knew what she was saying but he is just fine in a way I didn't expect, but I also didn't expect that his fine would be so awesome.

He had speech therapy today. He was eating a Reece's Peanut Butter Cup McFlurry. He was doing things in with his tongue he hadn't shown his speech therapist before. He was vocalizing, swallowing, he wanted more, he was interacting, I mean, don't get me wrong, he does have a huge crush on his speech therapy, but he was truly showing off! He even had her in tears for a second! So I got a little teary. 

On the way home I felt so unworthy of him. Like I don't deserve him or how well he is doing but I have him and I am so in awe. He is the most amazing blessing and I am better because of him.

I love his just fine.

Sunday, October 13, 2013

The 10%.

There are peaks and valleys in this journey. And I hit a little valley. So I thought it best to just stay silent and process it before writing it out. That's what usually happens. The writing comes after I've made a little more sense out of what's going on.

Nothing major. Don't get worried. Christian is doing well, healthy, no complaints or concerns right now.

I think it started with our trip to Mexico. It was a little different than recent years and there were more children around that were very curious about Christian. I think Christian is getting to an age where adults and children have more questions. He's getting bigger and looking older. He's no longer a double take for someone to wonder if he's just a toddler in a stroller. No. He's a full grown five year old in a balls to the wall wheelchair. Not a push chair. Not a modified stroller. A wheelchair.

Lately there have been more questions. Kids are more curious. Kids are scared. Kids wonder what happened to Christian. But they're all very adorable and want to know how they can connect with him. I guess what's worse is when they completely ignore him. But is it worse? Sometimes I wish we would get ignored...not stared at...not asked questions. Sometimes that's okay with me.

So in Mexico there were more kids around his age. We got more curious questions. And then more curious questions. I put on my happy, question answering face and tried to answer each one like always so as to make sure nobody felt uncomfortable. Maybe I was overly sensitive. I was probably oversensitive at the time, now that I think about it. But at one time I felt like I had just answered the same question. I couldn't get my voice any more high-pitched-helpful and I finally responded with, "What do you mean?!" As in, didn't I just tell you? No. It was her brother I had explained to about Christian. So now it was time to do it again.

There was a time during that vacation that I was sitting at a table with a six year old. And it hit me that the conversation I was having with him about his ice cream is something that would be happening with Christian. It's like I was fascinated by this realization. I tried to picture Christian in this conversation and it made me sad. I just wanted to stay in this ice cream banter and keep imagining what it would be like talking to Christian.

Look, I can only be happy-smiley-face-helpful-cheerful-voice-question-answering Shauna about 90% of the time. The other 10% is that I don't want to answer questions. I don't want to be your worse case scenario. I don't want Christian to be the reason you go hug your babies. He's not dead. He's very much alive. He's a kid. He's my kid. That 10% of the time I get tired of trying to help you understand. It's exhausting trying to make sure you don't feel uncomfortable or mourn for us. It gets exhausting trying to prove to you that we're all okay and you don't need to feel sorry for us. In that 10% of the time, I don't want to answer anymore questions. I don't want to be tolerant of you. I don't want to understand horrified looks. I don't want to be a teacher or an example or a resilient mom. I just want to be.

Lucky for you, I mostly function in the 90% of peaks and happy, understanding, educating mom-hood. I usually am happy to answer your questions. And when you show your warm heart and you bring your child to Christian to say hello and you speak sweetly to him and ruffle his hair, I am so happy to sit down with you and answer any question you have, whether I'm living in the 10% or the 90% that day.

Today I launched myself out of the valley with this one thought - I'm not the only one. Who do I think I am feeling sorry for myself? Do I think I'm the first person to ever go through this? No! Others have come before me and they all lived through it. So get over it!

I'm over it. I'm in the 90% again. For now.

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