I looked at pictures of my Charleston on my computer and found the ones I took the day he was diagnosed with SMA. I looked at the pictures of the day he was born. And I wondered why. WHY??????
I spent the morning with my girlfriend Sandy, and she was able to make me smile & be giggly. That felt good. But inside I was crying.
So I was pretty pathetic, and couldn't pull myself out. When I got home, I let myself cry.....cuz sometimes, ya know, you just need to do that.
We have been very worried about Charleston being bi-pap dependent. What does that mean? In the SMA world, it means the disease is progressing. It means he can't breath on his own without it. It means we won't get to look at his sweet face without a machine on it. It means it's another step closer to Ashley and Cameron having to make a choice to trache this precious baby boy. It means that my daughter is sad, and worried. Like she doesn't have enough to worry about already. It means I don't know what to say....because I've never been in this situation before. It just sucks.
But then two wonderful things happened. First of all, Ashley got through to Charleston's pulmonologist at Stanford (a feat in itself) and talked to her about it. The doctor asked a lot of questions about him...and then Ashley heard the wonderful news that our little baby is NOT bi-pap dependent!!!!! Thank you Jesus!!!!! Charleston recently got a new piece of equipment, called a Trilogy, which is a fancy bi-pap. And he just likes it. It makes it easier for him to breathe, and makes suctioning much less frequent......so he's happy on it. And that's what we want, a happy baby boy. And what I want is a less-stressed out daughter, and that's what I have now. So when she told me the news, what did I do???? Jump for joy???? No, I cried. Man.
Then the second thing happened. I received a message from a young woman, who used to be a young girl (duh.....). The reason I say this, is that I haven't seen her since she was a young girl. She is the niece of a friend, and she grew up to be an attorney, with a husband and 4 small children, two of them being my Charleston's age. We re-connected over facebook (thank you Mark Zuckerburg!!!!). Unknown to me, she has been following Charleston's journey, and it has touched her. She recently read a book called "Monday Matters" and decided to take herself on a personal journey of making a difference to someone each Monday. And she decided to make a difference to us first. She could not have reached out to me on a better day. She wants to learn about SMA; she wants to help us get the word out and educate others; she just wants to help. Do you know what this meant to me yesterday? It meant that there are people out there that do care...that do want to help...that aren't afraid to get involved. She's not scared to meet my Charleston, like other people are. See, we have "close" friends and family that haven't even reached out. And that just plain hurts. But this young lady MADE A DIFFERENCE to my little family yesterday. She made us feel not so alone. Those not affected by SMA.....you have no idea what the loneliness feels like. To our SMA families....you get it. So thank you, Jennifer. Thank you for your message, thank you for the phone call......and sorry I cried!!!!! It was just my day to lose it.
And then, last night when I got into bed......so thankful that my day was over.....I got this video of my Charleston laughing. And I went to bed last night feeling good about my day. Someone made a difference by reaching out when I least expected it, and my Charleston's daddy made him laugh. And I'm okay now.
