Sunday, May 29, 2011

The View from Within

Saoirse is doing quite well with this round of chemo. She is playful and happy and loving walking around the hospital wing. She is even eating and drinking more than she was, which is a great thing. However, being stuck in the hospital with her has me feeling a little bit trapped. Saoirse doesn't realize that she's missing the great weather and fun things that we could be doing this weekend if we weren't attached to an IV pole. Sure, we got to go walk around the hospital courtyard garden this morning, but I can't let her crawl around on the grass out there and dig in the dirt. I feel like we're just trapped in there, looking out small windows, wishing we were doing anything other than sitting there. Sometimes I think about all the things she'll miss out on this year: she won't learn to swim, she won't get to play with the neighbors in their little pool, she won't be able to go on a long vacation, and most of all, she probably will have more bad days than good days, when she will just want to sit inside and do nothing. I feel so helpless thinking about how much she's going to miss out on this summer. I wanted to give her a fun and exciting summer, with no worries and no limits. But I can't give that to her this year. Sometimes I just feel so helpless. When it was just me, I figured there would be enough other people to help her do fun things (plus, I was counting on being done at the end of July which left all of August). I was looking forward to doing so many firsts with her, and letting her explore as much as she wanted. I guess now we will just have to work on different firsts and explorations. I know she won't remember much of what is going on, and that in reality she won't be missing out, but I will know what she's missing, and I feel like seeing other babies getting to act out "normal" one year things just makes it harder. I keep hoping that she will continue to do well on the chemo, and that she will be her happy self as much as possible this summer. We will find fun things to do, even if they are different than what everyone else is doing. And who ever said it was bad to be different!


  1. Darling! Being sick is straight up awful and I can't imagine what you are or aren't going through. I wish I could do more than wish you luck and love.

    But I know you have the power and strength to get both of you through this.

    Growing up, we were all different. We had each other, which was perfect beyond words, but we were all outcasts and different. Today I am proud of that.

    Saoirse will love how different she is. And this is just the beginning. Just you wait.

    Love love love - madly love,

  2. Speak for yourself, Tanner, I wasn't an outcast! ;)

    Kezia, I'm so sorry that Saoirse is missing out on "normal one-year-old" things. But you're right! There's nothing bad about doing different things! She is surrounded by so much love, from near and far. You are an incredible mother and together, your family will get through this! I love you all!