Tuesday, August 26, 2008

Roller Coaster

Raising a child with muscle tone issues of unknown origin (that's the latest in guesses or estimates the doctors seem to have for us regarding Finleigh) can be a bit of an emotional roller coaster (as I'm sure it is for any parent of a child with health issues). I'm learning to detach my excitement and emotions from her progress, slowly but surely.

Love is different. I love her without question regardless of where she's at. What I mean is that a mama just wants to see her babies be happy and healthy. When they're not healthy or quite healthy, it can be hard. When they seem to be doing better...mama gets excited. When their progress goes backward...it's difficult not to be discouraged. So, while Finny is consistently improving over time, I'm learning to not get too excited by her individual accomplishments because it seems that she'll do it once and then take 2 steps back. I can't let that discourage me or I'll become paralyzed and she needs her mom to be strong, patient and encouraging.

Having said that, I want to tell you about Finleigh's latest accomplishments! We had a "tube free" day last week. Yes, that's right. We went a whole day where she drank enough to keep herself properly hydrated without the help of a tube. It was very exciting. Of course 2 days later she drank less than an ounce all day owing likely to a combination of teething and traveling (this is what I mean about not getting too discouraged). However, slowly but surely we're getting there, right?

I also watched Finleigh today go from a lying down position to a sitting up position...all by herself. I've known for a couple of days that she can do it, but I finally saw it today with my own eyes. She's also learned how to pull herself up onto her knees when she has something to pull up on, like the stove or the TV or the coffee table or a box of wine (see below). Her commando crawl has gotten quite quick and she can disappear pretty quickly now. That same crawl has almost evolved to a real crawl too...I see her practicing once in a while. These are all a big deal. One step closer to walking...hopefully by age 2.

Finleigh has 2 cousins very close to her age, one on each side. For the most part I don't compare them to her, honest. But every once in a while I feel a little pang in my heart (or stomach or both) for her. "Why can't she be normal?" I wonder. "Why does she have to struggle so much to do what comes so easy for most kids?" Then in my selfishness, "Why can't I have a normal kid? Why do I have to deal with this?" I see them running around and I just want to cry when I think that she should be doing that too. But these thoughts are few and far between (I only had 1 pang the whole week and a half we were together with the family). I've made a real effort not to focus on her age...just on her and celebrating her little victories as they come...however behind she may be.

So, that's my emotive post/confession/pep talk for today and hopefully awhile.


  1. Good for you for trying your best to find the positives, even when everything else tells you to be discouraged!

  2. She is SO beautiful in all these pictures Amanda - such a sweetheart. Thanks for sharing...

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  4. She's a doll! I love that she looks happy in every picture! What a beautiful little girl you have!

  5. look how much she's grown up!! omg, what a doll:)

    missed you honey, and yes "i'm baaaack"