Monday, October 22, 2012

Book Review: Bloom by Kelle Hampton

A few weeks after Claire was born a birth story starting showing up on the internet.  It was the beautiful story of a birth, followed by the unexpected news that the baby had Down syndrome.  We were nearly certain Claire had Down syndrome so the news wasn't a shock to us like it was for the Hampton's, but the raw emotion in the post resonated with me, and I couldn't help but cry when I read it.  Even now, nearly three years later, my eyes prick with tears when I reread the post.

This birth story was my introduction to Kelle Hampton and her blog, Enjoying the Small Things.  Kelle had been blogging long before Nella's arrival, but that birth story introduced her blog to a whole new set of fans.  Because our girls were nearly the same age, and because Kelle seemed to be *the* Down syndrome blogger to keep up with, I started following along.

After reading her blog for a while I discovered Kelle and I are so very different.  Her world is (seemingly) filled with perfectly dressed kids, extravagant parties, beautifully staged photos and I often left her blog feeling a bit defeated.  She seemed to have it all together, and I was lucky to have time to do the dishes and take a shower.

Because I felt so far removed from her way of life I didn't read her memoir, Bloom, for quite a while. (I actually had to check it out from the library three times.  It kept expiring because I never made time to read it, even though it is a fast read.)  If you've read Kelle's blog, expect more of the same from her book.  If you are new to her...there are stories about her amazing group of friends and all their crazy times together, beer handed out liberally, and lots of dudes, bad asses and hot messes.

My main criticism of the book is that it's not particularly well written.  There are quite a few times I had to remind myself that this was a grown women, a mother, telling her story and not a high school student.  Parts of the book were incredibly juvenile, as if Kelle was mainly concerned about still being the cool kid, even though she now has this not quite perfect daughter.  I wanted the raw emotion that came through in Nella's birth story, and I just didn't have the same connection to Bloom.

Where Bloom shines is with the photographs.  Kelle is incredibly talented, her girls are beautiful and that helps Bloom appeal to people without children with disabilities.  People can easily glance through the photos and see that Kelle's life, and ours too, really isn't that different from anyone else's.

Recommended? Yes and no.  There are many, many people in the Down syndrome community who have read and fallen in love with this book.  Many seem to connect with the emotion in it, but I wasn't one of them.  I would read a sentence here and there are think YES!! I remember feeling that way.  But I wanted those moments of connection throughout the entire book, and I just didn't have that.

I think Kelle has managed to take away some of the fear surrounding Down syndrome with her photography, book and blog, and I appreciate that. Read this book for the photos.  As with any memoir, remember that this is Kelle's experience, not mine.

Friday, October 12, 2012

Do you say something...or let it go?

Wednesday was Claire's first (short) day back at daycare after being sick.  I dropped her off after OT and planned on picking her up before the kids laid down for their naps.  When I arrived to get her the kids were all outside playing.  Everyone was running around having a great time, the teacher was up near the building with a couple of kids, and Claire was sitting in her swing.

Just sitting there, alone.

I really like everyone at Claire's new daycare.  They put this swing in just for her, and I was 99% sure that she was being pushed in the swing, then a situation came up that the teacher needed to address, and she stepped away.  It happens.  I know that.  Claire was not in any danger, and was not going to get hurt.  She was not upset.  She was just sitting there.

But, she looked so little and so alone sitting there.  And my heart broke a bit.

The teacher could tell that I was upset when I walked up.  She asked what was wrong, and I just shook my head.  I needed some time to decide what I wanted to say about the situation.

I know that having Claire contained at times is great. For example, she's sat in the car (with the doors open) for a minute while I hauled grocery bags inside.  But I needed to make sure that this wasn't going become a common occurrence.

This morning I pulled this director aside when I dropped Claire off.  I explained that driving up and seeing Claire stuck in her swing and ignored was not a good feeling.  I asked that if the teacher needed to step away from her that she take a few seconds, if possible, and take her out of the swing.  Apparently the teacher guessed that Claire stuck in her swing was what was bothering me.  She explained the teacher stepped away because other kids were throwing rocks.  I believer her.  I know things come up.

But at the same time, I had to say something.  I had to make sure Claire was being properly taken care of.

Today I'm reminding myself that I'm not that mom.  Even though I feel like it, I'm not super critical or nit-picky   I am simply concerned about my daughter. And right now I am her voice.

Thursday, October 11, 2012

Mean Mom

While I never officially committed to the 31 for 21 Challenge, I *thought* this might be the year I would actually complete it....and then Claire got sick.  At first it was just a cough and a runny nose, then a bigger cough, more congestion, 4 days of fever and an ear infection.  We spent days just snuggled up on the couch.  She finally felt well enough to go to daycare for a few hours yesterday, but that little bug meant I didn't get on the computer for days.  Oh well, there's always next year, right?

I stayed home with Claire on Monday, and Darren was home with her Tuesday. Tuesday was her doctor appointment, which is not a job that Darren is used to doing.  I had to make sure he knew which door to go in, when the appointment was, and to remind him which pharmacy we used.  Even with all of those reminders he called me mid morning because he'd already forgotten what time the appointment was.

I dropped Claire's antibiotics by the house while she was napping so that we could get them in her once she woke up.  She'd been resisting when I'd given her motrin for the past couple of days, so I knew the antibiotics were going to be a battle too.  Not long after she woke up I got a call from Darren.  He said that he'd tried to give her the antibiotics, but she wouldn't take them....

Enter Mean Mom.

I'll spare you the details, but the antibiotics are going down, and she is finally feeling better.  Today is her first full day back at daycare, and I hope she does well.  She's still been pretty worn out by the end of the day.

Thursday, October 4, 2012

Step Up for Down Syndrome

Last weekend was the Step Up for Down Syndrome walk. This is an annual fundraiser for our local Down syndrome association. The walk hosted more than 4,000 participants and raised over $280,0000! In addition to benefiting a very worthy cause, the walk is just fun. Teams set up tents, and friends (either new or old) are never far away.

Claire started out riding in the stroller, but it didn't last long.  Miss independent insisted on walking the entire mile.

Bridget didn't last long.  :)

Halfway through the walk with Mimi and Grandma.

Claire wasn't happy with just walking....running was her speed.  (which is what Darren is signing)

Crossing the finish line

Cousins  :)

Our Team

Thank you so much to everyone who supported Claire, whether in person, by walking virtually, or with a donation!

Wednesday, October 3, 2012

Tuesday, October 2, 2012

People First Language

"Just because she's a Downs we don't just ignore the issue."

This statement was made to me by Claire's doctor as we were following up on her liver issues last month.  See the problem with it?? 

Claire is not a Downs.  She is not a Down syndrome child.  She is not Downsy. She is not high or low functioning.  

She is Claire.

First and foremost she is a feisty, independent, funny, and loving two year old.  She adores her sister and taking care of her babies.  Cheese and veggie straws remain at the top of her favorite foods list.  If it was up to Claire, Signing Time would be on the TV all the time at our house.  She rarely sits down to watch anymore, but loves having Rachel as background noise.  Claire can't get enough of talking on the phone, especially to Grandma.  

That is Claire.  No mention of Down syndrome is needed to tell you about the awesomeness that oozes out of her.

Think of it in another way....would you ever call someone cancer man, or diabetes woman instead of using their name?  I doubt it.  If you wouldn't use those words to describe someone else, please don't do it to Claire. While it may seem like a silly request to some, it all comes down to respect.  Claire deserves respect just like everyone else.

If you define Claire by Down syndrome alone, you miss out on *her*.   

Monday, October 1, 2012

Down Syndrome Awareness Month

When many people think of October and awareness they think pink.  We love seeing pink all over supporting breast cancer awareness, but for us, October also means blue and yellow.

If you have any questions about Claire, Down syndrome, what therapies we participate it, school or anything else you can think of, please ask.  In addition to any questions, I'll also be sharing some facts on Down syndrome and hopefully dispelling some myths as well.