A better than normal life

Posted on July 15, 2014 by mommabear0208

In my world, life these days is far from normal.

Last week, Lily and I went on vacation. It was the first real vacation this sweetie pie has had in well over a year. It was such a treat, on so many levels. Spending an entire week straight with my daughter is a rare occurrence. Not having my daughter at home with me every day breaks my heart. But I can’t walk around heartbroken. It won’t do either of us good. So instead, I cherish every moment I have with her. Better than normal.

We started our vacation in New Jersey with our cousins and then drove up to the Cape to spend the week with friends. Perfect weather. Perfect company. Amazing hospitality. Getting handed a hot cup of coffee every morning, not having to think about what to eat for lunch or dinner (wow, did they feed me well) and hanging out with Lily so that I could swim a few laps – this is what I call luxury. And love. We were both so loved and cared for that week. Better than normal.

I told myself before we left for our holiday that I would NOT stress out about the upcoming apartment hunt, that I would not check my work email, that I would not worry about the future. And you know what? Looking back, I did a pretty fantastic job of not worrying about any of these things. But this is mainly because everything got trumped by one big, scary event that happened on the day we were driving up to the Cape. My mother fell gravely ill while on vacation in Italy and had almost died.

Even as I write now – a week later, my mother is still in Italy, in a hospital. Thankfully she is recovering and has finally been able to eat something today. My sister (who was in Italy with her) has been taking great care of her; my brother Matt is heading out tomorrow to take over. And me? Well, the guilt I feel of not being able to drop everything and go over there is palpable. But I am doing what I can from here. And once I find us a new home, I’m on the next plane to Italy. (I may dedicate my next post to the soul-sucking experience of apartment hunting in NYC.)

But this post is about a better than normal life… So actually, it’s amazing to me that my mother – the fighter that she is – survived. It’s amazing to me that she is getting better day by day. It’s amazing to me that she has so much love and support from her family and friends.

What else is better than normal? Watching my silly Lily run and giggle up and down the beach at the Cape while making friends with everyone she came across, and knowing that things could have been very different for her.

The stairmaster

Posted on June 29, 2014 by mommabear0208

What a great weekend… But of course, it’s always a great weekend when Grandma’s in town!!!

We were socialites on Friday evening. It was girls night out with Maureen, Auntie Angela and Grandma…

We spent time frolicking with our playgroup friends on Saturday morning and then climbing up the stairs (all by herself I may add) at the park to get to the swings.

And we did LOTS of giggling. I mean LOTS. Between me coming up with new songs to sing (currently L’s LOVING my rendition of the opening song to ‘A Chorus Line’) and Grandma just being Grandma, this little girl was full of non-stop laughter.

And… I don’t want to jinx anything but I may have just found us a new home!!! More soon on this.

Love,

C and L

“And though she be but little, she is fierce.” – William Shakespeare

Posted on June 24, 2014 by mommabear0208

Check out that faccia! I mean – seriously…. she’s just the best.

Even when she doesn’t sleep at night.

Even when she goes through yelling spells.

Even when she refuses to listen to me.

She comes home to me tomorrow night and I’m bursting at the seams to see her again!

Advocate and mother

Posted on June 20, 2014 by mommabear0208

Tomorrow is a very big day.

It’s the day that we discuss the kinds of special services Lily is going to need in preschool. I’ve already presented the district administrator (decision-maker) with a letter from the Rett specialist emphasizing the need for certain services. Thankfully he complied with much of what was requested. And he agreed to the preschool location, and to the classroom size. BUT. But…

There are additional things that MUST be put into her IEP (individualized service plan for those of you not familiar with special needs lingo) which have not yet been granted.

It pains me as a mother to push for my child to have hour after hour of therapy. I want her to enjoy preschool and to learn to socialize. I am grateful for the NY Early Intervention program she’s participated in these past (almost) two years but it definitely lacks in the social skills enhancement category. It is all one-on-one instruction (and for Lily, that means 30 hours of one-on-one instruction). Preschool is going to be fantastic for her as she is such a curious and smart little person and is definitely interested in others. But she can only take it so far as she can’t speak (yet). And she doesn’t have great hand use. So – imagine trying to have a conversation or bond with someone when you can’t talk or use your hands. My sweetie.

I digress. Where was I? Oh yes. Basically tomorrow I need to advocate for Lily to get A LOT of services. A lot. Which means that she will be getting pulled out of the classroom many times, on a daily basis, missing so much of the socialization (and beauty) of preschool.

I want my sweetie to relax and enjoy and not have to work so hard all the time. But I know that if we don’t keep up with all of her therapies (and then some), she will regress. We see it every few weeks when the therapists try to pull away from a program which Lily has mastered to get her to learn something new. A few days, or weeks later when we go back to the old program, she can’t do it. She has to be retaught. These programs are things like shaking a maraca, brushing her hair, going up and down stairs.

It is heartbreaking. But Lily always relearns it. Relatively quickly.

Hence the need for intensive, constant services. I wonder when, if, it will ever end for her. We’ve been so lucky with her therapists that they are so loving and kind and make learning fun (most of the time). I pray that this will continue through her school years.

I pray that we find a cure soon so she won’t have to struggle so much.

And please say a prayer (or send a positive vibe – whichever you prefer) my way tomorrow as I’m feeling really sad that this meeting even needs to happen.

Love,

C and L

Preparing for preschool. Learning ‘quiet hands’ while watching Zac Effron (her favorite).

Me, tomorrow.

And now what?

Posted on June 16, 2014 by mommabear0208

So Lily’s communication device (the Tobii) arrived last week. And it’s been sitting in its computer case on the floor ever since. I briefly opened it up to take a look and quickly got overwhelmed. I need my brother Matt (the computer guru) to help me figure out how to set it up. We are getting a private training next week on how to begin using it and in the meantime, I’ve gotten a print-out of the content which is on the device and am familiarizing myself with new symbols which will eventually become part of Lily’s vocabulary. This is going to be quite the learning experience for Lily, me, her dad, the therapists, and well, everyone else who interacts with Lily on a regular basis. And I’ve been reading up on it, but putting theory into practice is another thing completely. Wish us luck!