July 26, 2010

What Do You Wish For When Your Wishes Have Come True?

I have expressed on my blog before just how grateful a mama I am. Despite all the curveballs that life has thrown at me and my family (not the least of which is a husband with Young-Onset Parkinson's Disease and a daughter with a huge list of medical issues), I do appreciate all that we have and how good we have it.

Since A got her feeding tube and breathing tube removed a week and a half ago, I have been thinking of all I had wanted for A in 2010. As I have mentioned before, my big goals are all checked off:


develop more language, both receptive and expressive

eat and drink enough to get her feeding tube removed

get her breathing tube removed

My 2010 goals for her are all checked off, and it's only July! Which leads me to a thought: what do you wish for when all your wishes have come true?

Yes, there are lots of thing I wish for. I wish for A to run and jump and skip and develop even more gross motor skills. I wish for her language to get even better, and her speech to become even clearer. I fervently wish for a cure for Parkinson's Disease. Heck, I will even admit that I wish we would win the lottery!

However, I know what I already have, and am grateful. In Judaism, there is a song we sing every Passover called "Dayenu". Dayenu means "it would have been enough for us". As in, "it would have been enough for us if God had led us out of Egypt", etc. In my case, it would read something like this;

It would have been enough for us if A was only able to sign; instead she is able to talk, with a great vocabulary and in increasingly complex sentences.

It would have been enough for us if A was only able to use the walker to ambulate; instead she is walking around as if she's been walking for years, instead of for only 6 months.

It would have been enough for us if her feeding tube was removed, as was the plan; instead, her breathing tube was also removed and she is tube-free.

It would have been enough for us if she were only able to hear a little bit; instead, although she is deaf in one ear, she is aided-to-normal (with a hearing aid) in one ear.

You see, in my mind, everything that A does for now on is the icing on the cake, so to speak; it's all gravy (why are all those great metaphors food related?). I'd love her to run one day, but it's ok if she doesn't. I'd love her to be able to speak clearly enough that she is understood 100% of the time by everyone, but again, it's ok if she doesn't. She has a solid base now, and anything she does from here on out is...well....the cherry on the sundae. Dayenu.


  1. I'm thankful for this post. Showing that emphasis on eating and walking early could be the best focus evah! "She has a solid base now".


  2. Just found your blog...love it!! I love the positive attitude you have! It's beautiful! Also, I'm happy to hear that your daughter is doing so well. It;s so nice to "meet" you!

  3. Now I suppose you get to focus on the pure and simple joy that comes from being A's Momma.

  4. I am so happy for you! What a great mom you are.

  5. I am really enjoying your blog! Thanks for sharing...


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