Pizza!

Posted on October 18, 2014 by mommabear0208

As many of you know, my child is highly motivated by food.

Well, when she started preschool, I was faced with a dilemma. The school has pizza Fridays and Lily’s diet is so restrictive (she’s on the GAPS diet for those unaware), that pizza is a BIG no-no for her. Her dad and I both hemmed and hawed it for a while but agreed that it would be a great experience for her to fully participate in this sacred meal. She is VERY curious about what other people are eating (oftentimes, after she finishes her dinner, she starts to pick on mine) and she has so many restrictions in her day to day life that giving her this one – easy – thing would help her feel more of a part of something, rather than being on the sidelines – like she is with so much else.

So pizza Fridays have begun. Here is an excerpt regarding the first pizza Friday from the communication book her teachers and I pass back and forth each day:

Lily LOVED pizza Friday. She ate consistently for a half hour. Lily loved it so much she was saying ‘give me’ and ‘more’… I was so proud of how much she was talking.

Miss Susan (her teacher)

Lily said more words in one day than she has in an entire month!

So, yesterday was Friday and she didn’t have school so I decided to take her out for dinner and we had pizza! Again, she loved it. Again, she said more words at that meal than I had heard throughout the week.

I wish every day were pizza Friday!

Fresh meat

Posted on October 14, 2014 by mommabear0208

Lily + preschool + germs = a very sick kid.

Within the first month of school, she had to stay home three separate times because she was ill.

Fevers and stomach bugs seem to be her thing.

She most definitely is fresh meat, a phrase I am borrowing from my cousin Miriam. It perfectly describes my sweet Lily. For the first 3 1/2 years of her life she didn’t spend a lot of time with other children. She was so busy with one on one therapy (30 hours a week of it) that she was shielded from many of the germs that children pass on to each other.

Not any longer. She is making up for lost time.

The heartbreak I feel as a parent not knowing exactly how to console her, not knowing exactly what is wrong is indescribable.

I know she wants to tell me that her head hurts her, that her tummy hurts, that can you rub my back mommy? But those words don’t come out. So I have to act as a mind reader. And I do the best that I can but I’m always second-guessing myself and I’m always feeling like I’m not doing enough for her.

Today we both stayed home from school and work. Both of us are sick now. But I know we are on the mend and our immune systems will bounce back and be even stronger going forward.

Love,

C and L

It takes a village

Posted on October 9, 2014 by mommabear0208

I just wish the village in this photo lived a little bit closer to me and L…

This past Sunday, friends and family from all over the country joined me and Lily – and countless other Rett families – to raise awareness, and funds for Rett Syndrome. I kept telling people this was like the wedding reception I never had. Except it wasn’t a wedding reception. And we came together for something I wish never existed. But wow was I glad we came together. There was so much love. So much laughter. So much acceptance.

I was overwhelmed. Lily was overwhelmed. We both cried that day. For different reasons. Though L loves the outdoors (you should see how she stares up at the leaves on the trees during our evening walks), I think she didn’t love the crowds. And wow, our family is a crowd. So she needed a lot of consoling throughout the walk. She cried a bit. And sometimes, when she’s overwhelmed, she falls asleep.

For me, the tears came from seeing all those Rett sweeties, knowing full well the struggles that these girls, and their families go through, the fears that I have for Lily’s future, the loss of what I thought Lily’s life would be like. But there were equal amounts happy tears – family reunion! There were people there that I hadn’t seen in YEARS. People who flew in from Florida, drove up to 6 hours to be there. For me. For Lily. For us.

Thank you all.

Sending love,

C and L

It’s my party and I’ll sleep if I want to.

Team Lily NJ Strollathon 2014 – Top Fundraisers!!

Somebody has a boyfriend

Posted on September 25, 2014 by mommabear0208

Don’t get too excited everyone. I’m not talking about me! I’m talking about L…

At her school meeting yesterday which included her teacher, social worker, psychologist, nurse and curriculum coordinator, we discussed all things Lily. It was a 2 hour long meeting. And we spent much time talking about her medical history and their concerns about her seizures (which have started to get a bit more frequent), her eating (see previous post) and her fatigue (there is no naptime at school and there are a LOT of stairs she needs to climb throughout the day).

After we got through the heavy and scary stuff, I asked about how she was doing in the classroom. Was she interacting with the other children? Was she having a good time? Participating in group activities? Her teacher, Miss Susan, told me that Lily is getting comfortable with all the adults (and I saw this when I brought her in to school as she walked up to her para Ursula and gave her a big kiss) and, depending on her level of fatigue, is participating in classroom activities. Susan mentioned that when the kids go and have free play outside, there’s one particular boy who has taken quite a liking to L and she has noticed that L likes this boy too. A bit of a love story is unfolding at the playground she says….

I mean, how could you NOT fall in love with this kid?

On swallowing

Posted on September 23, 2014 by mommabear0208

There are SO MANY THINGS that each of us take for granted in a given moment. Swallowing is one of the more recent ones I’ve come to realize. Imagine it. Not being able to swallow.

Now imagine watching your child losing her ability to swallow. In front of your eyes.

I don’t even want to be writing these words. I don’t want to be thinking these thoughts. But this is a very big concern. And what L and I need right now is a lot of positive vibes, prayers, and thoughts.

I scheduled a swallow study for next month and I’m really hopeful (almost to the point of being confident) that this is just a phase that Lily will bounce back from.

Who knew that a swallow study was a thing? That doctors specialize in this kind of stuff?

There is so much that I am learning about that I’d prefer never to know.

Regardless, I am going to focus on the positive. L is running. L is happy. L can sometimes swallow. Sometimes not. Her weight is good. Her coloring is good. Her hand function hasn’t gotten better but it’s not gotten worse. She’s been (almost) sleeping through the night. She loves music and giggles and being tickled. She loves her mommy. And her mommy loves her.