Friday, May 4, 2012

Unexpected gratitude

The other day I was thinking of some little thing that Lucy had done and I was smiling and thinking about how great she is and how hard she works for every little accomplishment. I don't remember exactly what it was she had done that I was thinking about, but as I realized that I was smiling, it occurred to me that in spite of the Rett went on. We are still happy and madly in love with Lu, and always proud of her. And then it also occurred to me that while Rett Syndrome sucks in one million ways, it has also given me a gift. And mothers that I spoke to in the beginning said that there would be "blessings" and positive things about Rett Syndrome and I was like, "Yeah freaking right! Doubtful!" But here is the first gift I realized I have been given: Rett Syndrome has completely taken away my ability to take for granted anything that Lucy does, and I really mean anything! Because nothing much comes easy for my daughter...except for smiling of course!

Here are some examples of things I get excited to tell people:

1.Lucy ate almost an entire bowl of Mac and cheese with tuna, with her fork! I had to load it for her, she wore a splint on one arm to keep it under control, and I am constantly on guard for her to lose her fork, but she did it on her own, and willingly, which is even more important.

2. Lucy has learned to scoot on her bum all over the place and now actually tries to go get things, whereas a year ago she could not have cared less about getting to a toy or trying to nib in stuff on the end table, or whatever.

3. Lucy pees on the potty most nights after her bath!

4. Lucy is starting to be able to stand up so straight, and tall, and strong.

5. Lucy has started initiating interactions with other toddlers while at Kindermusik by scooting over to them and touching them...most of time she is a little rough (unintentionally) and they are a little wimpy about it (except for her buddy Cecelia), but she's getting in there with everyone else which ROCKS!

6. Lucy is getting awesome at making choices by pointing to or touching her choice and also can accurately identify all kinds of animals by touching the right flashcard. So she's learning to let us know that she's in there and knows stuff, and has her own opinions! Tonight I held up the Ovaltine container and the strawberry Nesquik and asked which she wanted with her supper and she chose the Ovaltine by reaching over and touching it!

How terrible must it be for Lucy to not be able to just do what she wants to do, say what she wants to say, or move any way she wants to move. And so as I am constantly keeping that in mind, every little thing she is able to do on her own makes me so incredibly proud that I nearly want to shout it from rooftops! But what I have realized is a gift has actually been shown to me by parents whose children do not have the struggles that Lu does because to them it is just a given that their child will develop as expected and do the things that kids do. And they don't necessarily celebrate each minute feat because, quite frankly, they take them for granted...just par for the course for them. Now, before anyone gets mad at me for saying that, I fully realize that I would likely have been of the same mindset if I didn't have to watch Lucy struggle just to lean over to get a toy, or maintain her grasp on a utensil. I get that...but maybe I would even say, "luckily" I can't take anything for granted.

I appreciate everything Lucy does, I am grateful every day that her situation is not worse, and I am glad to be able to stop and see how precious all of these tiny things can be. I still hate Rett Syndrome with every fiber in my being and if we could banish it tomorrow I would, but even if it went away I would still be able to be thankful every day for the things that my Lu CAN do, and not just fretting about the things she can't do. That's not to say I don't fret because believe me I do...a lot. But I try very hard to not let that fretting take over and then not let myself and others see the wonder that is Lucy May.


  1. Awesome discovery, isn't it, when you realize all the super good things your child is giving you! And you will keep seeing those things and because of what she goes through for those achievements, you will appreciate them -and her -and love her even more than you thought you already did! Such a good feeling to see things like that happen though, isn't it? I marvel all the time at things that Maya and Kurtis do, the way they come around in their thought processes mostly with them though -although, with Kurtis, any improvement in his eating skills is something to get excited about here!

  2. As I was reading this, I was thinking, although Lucy won't develop "normally", there will be just as many little (and big!) triumphs and achievements that she will have as any "normal" kid has...they will just be different ones! Instead of meeting her speech milestones, she will learn to communicate in a very different (and probably more difficult) way, instead of the typical gross motor development, she will make her own-scooting, learning to stand up tall!, among other things...socially and educationally she will go down a different path too, but still have many successes and challenges just like any other kid-immense challenges to overcome, but if Team Shaffer can't do it, then I don't know who can! You mentioned other parents taking their children for granted, and quite frankly, you're right. We kind of floated through the first few years of parenthood (with lots of challenges, but never knowing what we were dealing with since it was our first experience)...and when Elliot came along, life was peachy. When Lucy was diagnosed, it was a wakeup call to me-that I WAS taking my kids for granted a lot of the time and I needed to spend more time just appreciating how good I have it. Now, having gone through a fraction of what you have dealt with as far as medical crap and testing with Maddie, I know how scary and frustrating it can be. Know that I celebrate with you everytime Lucy chooses her own drink! Love you!!

  3. Julie, you and Lucy are very dear to us and you are right about taking things for granted. I love and enjoy our time together, but it can be sad as well seeing the evil Rett Syndrome in action. I have to say, though, it's a somewhat spiritual experience for me at times holding Lucy while you put her car seat in on Fridays. It is very easy to take milestones for granted and being that we are fortunate enough to not have had to deal with anything close to what you, Lucy, and Chad have with the Rett Syndrome, from my side that is also the only thing I can be grateful about it for. I am grateful to have you in my life to remind me to look at Celie’s small accomplishments and growth more often and appreciate even the “hard” times. Holding Lucy and letting her play with my necklace and hair, I am reminded of her utter and complete innocence in this and the beauty that there is in that for just being everything that she is. She slows my mind to a standstill and she and I are paused in time as she plays with my hair and I think about the things I am grateful for and how strong Lucy is already for just being her. My accomplishments seem so easily achieved compared to Lu’s. She seems like a sage of sorts to me. She will work far harder at things than I ever have in my life and it makes me feel kind of guilty. I have no doubt that despite the Rett Syndrome and whatever future it entails, Lucy will grow to have a wonderful life and be many things. She is already a teacher; she is teaching far greater lessons to those around her than if she had never been born with it and had the “easy” life that is so often taken for granted. You are one of the best mothers I have ever witnessed and it is an honor and a privilege to have you in my life. Love you guys!