Today, though, while I'm here doing therapy with Sammy, I'm thinking about Nate. My little nephew Naters. (Yes...I add "-er" affectionately to those I who are adorable ... Sammers, Naters, and maybe one day if proven cute enough, even YOU will get an "-er" on the end of your name) Anyway...Nate's consuming my thoughts.
|Two turntables and a microphone....|
So I'm here...on the couch in the family room, deciding to relax and put my feet up, listening to my music (today I'm feeling kind of chill with Mason Jennings, Griffin House, and Elliot Smith), breathing, drinking, coughing, and I think about Nate. Because, the only thing Nate can do among those things I mentioned that I am currently doing is listen to music. He can't say, "Oh, I think I'll kick back and put my feet up." No. Someone has to help position him to do that. He can't breath on his own. And, he certainly cannot cough if he gets a cold. That's why it's so dangerous for him to get sick.
I have spent the past 2 hours reading about SMARD, reading about a boy, Gus, who is hiking to raise money for SMARD research and working on my contacts to see how we can raise money for Nate. There's a football fundraiser coming up here in November, and there are works for another bigger fundraiser in October. I hope so much for Nate and his family.
What I want for Samantha is for people to see her and feel her spirit. It's ok if they notice her microcephalic head and her palsied movements. I'm ok with that because that is what makes her so awesome, that despite those thing...or maybe because of those impairments...she is able to shine brighter than the average kid. I have often said that her spirit is so much bigger than her body that it just oozes from her. It's true. She's such a source of light.
Well, I feel that same way about Nathaniel. I notice his trach. I notice that he can't function like most kids and that he is connected to a machine. But despite that...or maybe because of it?...he shines brighter. His whispy voice makes me melt when he says, "Jenny" with a smile...when he reaches out and wants to sit with me. When he wants to be by Callie and Sammy, it brings me so much joy. He loves Callie. And he seems to understand Sammy's spirit. I really wonder if they knew each other before they were even born. I've joked and said before that Samantha and Nathaniel are competitive...that in the premortal existence there was a conversation that went something like this:
S: I'm going to be born with a small head.
N: Oh yeah? Well, I'm not going to be able to breathe on my own.
S: Oh yeeeah?! Well, I'm going to have seizures that shut my body down and are so crazy. I'm really going to freak people out.
N: That's nothing. Come on Sammy. You gotta do better than that. Breathing. Remember. Vital to life. I can't do it. And I'll almost die. Think of how that will freak people out.
S: Well. (In deep thought) I can't talk. You can.
N: Yeah. Well, I can't walk. You can.
And the conversation continues. It's happy, friendly bantering of course. I don't mean to be disrespectful...honestly, but these two have given our families a run for their money and one has got to wonder how close they really are. Now, honestly speaking, I think their conversation went more like this:
S: Are you ready for this?
S: Are you sure?
N: No. But, when you think about it, it won't be that long down there before everything will be normal again. Are you ready?
S: Yeah. (Quiet. In deep thought.) I love you Nate.
N: I love you too Sammy. Do your magic and get my dad and mom ready. Seriously. It's going to be hard for them.
S: I know. I'll see you soon...remember this, ok?
C: You guys are so dramatic. Come on. I got both your backs.
Then I'm sure there was some kind of fist bump that sealed their promise that they'd all be there for each other...that they'd cheer each other on...blah blah blah. Is that conversation cheesy? Yeah, disgustingly. But tears are streaming down my face as I think about it because these kids are more than special. They are angelic and I feel so blessed to have Samantha, Callie, and now Nate in my life.
If you are interested in finding out more about SMARD and how you can help Nate and kids like him, go to my SMARD and You tab above.