Wednesday, May 12, 2010


(Charlie and mommy in Hawaii, taken by our nurse Anita)

Whoa, it's been over a week since my last post...where does the time go? Seriously?! The days fly by...I get up earlier than I ever have in my life, yet the days/weeks/months seem to evaporate so quickly! It doesn't make sense! I think when you care about and love something so much, there's never enough time to just relax and slowly enjoy're always left wishing you could have a good vacation, the more you try to savor it, the faster it goes by.

Matt and I have continued the conversation on more children. I think I go back and forth more then he does...before all of this, I only ever really wanted one child, and now my reasoning for wanting more children is so twisted that I can't really unravel it and see what and why I want or don't want what I want, clearly. Understand? Neither do I. The selfish part of me says I just got my body back and I don't feel like being pregnant again yet, and the logical side of me says I'm no spring chicken and it could take a while to become pregnant and then there is a great likelihood that there will be complications and we'll have to start all over again. Matt and I have discussed all of our options and we want to try naturally at least once. I've told him that if he twisted my rubber arm I may be willing to have relations with a tall, dark skinned man, with washboard abs and swollen lips, if I really had to, for us. He appreciates my generosity and selflessness, but says it won't be necessary. ;)

I keep seeing commercials for that show on TLC called "19 kids and counting" and I can't help but think, "you selfish jerks!" Apparently their 19th child is sick. As much as I don't want to hear about or see a sick baby, did they seriously think they were going to win the baby lottery 19 times? They seem shocked, "how could this happen to us?" How could it not? I'll never see conception, healthy pregnancies, healthy births, and healthy kids, as anything short of miracles for the rest of my life, and when I see people like these, I think they are playing with fire. But, that's just my tainted opinion. I'm sure they are really lovely people with big hearts and an even bigger dining room table.

So, I've decided that I'm going to start letting strangers know what's going on with Charlie. People ask me all the time how old she is, and she's definitely at that age where they know she should be way more physical and way less floppy and weak. When they ask me her age, I always squirm, because when I tell them I'm wondering if they are wondering if i know there is something wrong with her. I can tell they want to ask. They wave and she smiles, but doesn't wave back. They are completely shocked that she 'loves' to wear her sunglasses and never pulls them off. It's getting way to obvious to just smile and nod, hoping nobody notices, and I feel the need to just get it out and over with. If I'm not being open and honest it makes me feel ashamed and uncomfortable because I think it looks like I'm embarrassed of her, when it's actually the opposite...I want everyone to know about Charlie so they can see how brave and happy and special she really is despite being so sick.

Charlie has been beating all the odds since she's been diagnosed with SMA. Her decline has been much slower than what we were told to expect, and it makes Matt and I proud. I asked Matt today, " If Char could live a long time and it meant you/us taking care of her full-time forever, would you want that?" And he didn't even think about it for one second, and said, "Of course! I would be so happy to! I have never loved anyone more than I love her!" Sometimes I think it's just me that would do anything for her and that Matt is the more rational, level headed one when it comes to Charlie and her situation and care, but then he says or does something to remind me that we're both absolutely crazy about her.


  1. stephanie mattisMay 13, 2010 at 8:24 AM

    Thankyou for being so honest, loving, brave, strong courageous, and amazing. Charlie-Anne is so lucky to have such an awesome role model.
    Thankyou for your generosity in sharing. I have a greater understanding. <3 to Charlie-Ann, You and Matt.
    x Steph

  2. Your blogs make me smile and cry at the same time. She's such a little angel and you guys are AMAZING parents.

  3. your family is effing awesome. can i say that here? cause you are.

  4. I think it's a good decision to let strangers know about Charlie & I'm sure you'll know when to do that. You'll find out how kind people can be, they far outnumber the ones who aren't.

    Your blog is always an inspiration. It's so good to know Charlie is doing so well & that the SMA is progressing slowly.

    Hugs to you all,


  5. I love that picture of you two <3