In Memory of Erin Thomas

A wonderful person died this morning, and I am still in shock. Erin Thomas was a dwarf with Achondroplasia, the same diagnosis as Caitlin. I met her three years ago on Facebook via mutual friends and we've become good friends over the years, bantering about football and politics, both of which we disagreed on, and trading notes/insights on raising kids with dwarfism where we had much more in common. Her husband has SEDc, a more rare diagnosis, and both her children were dwarfs as well. Her son, Joseph, had lost his battle with medical complications in 2007 which had led Erin and her husband to start the Joseph Thomas Foundation which supported other medically fragile kids and their families. Erin's daughter Emma, a feisty little girl who had inherited both her parents' diagnoses, had just gotten her trach removed that she'd lived with her whole life because she no longer needed it, and had gotten to actually go swimming for the first time ever this summer. Today is her birthday, in fact.

Erin had also just come into her own as a parent advocate with a presentation she made at the regional conference for District 12 of the Little People of America last April in Valencia, CA. Her presentation had gone so well that there was talk of her getting involved with the national organization, providing support to parents who needed advice. She and her husband had also just opened their hearts and home to three new kids who didn't have families of their own, including a 17 year old average height boy who had immediately become the ultimate big brother to Emma.

I don't know any actual details at this point, but what I do know that John went to wake up Erin this morning, and discovered that she had died in her sleep overnight. To the best of my knowledge, and that of many of her friends (several of whom had just spoken with her yesterday) nobody suspected that anything was wrong, and certainly nobody thought something like this was a possibility.

I am still in shock and mourning, as are the many people that she touched in her life. Her humor, her lively personality, and her insight will be sorely missed.

Good night, sweet Erin/And flights of angels sing thee to thy rest. And give Joseph a hug for all of us when you get there.

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Eleven years ago I married my best friend

After a long night in Biloxi

On a Saturday eleven years ago, a much different day than today, my best friend became my wife.  I'd been fascinated by her from the moment we met - so beautiful, so confident, so strong willed - and yet completely confused by how different she was than me.  I figured the best way to try to understand this woman who caught my attention was to stick with her as long as possible - and while I've never begun to make sense of her, it's turned out to be the best decision I ever made.

Cherylle is intelligent, passionate, and deeply caring.  She is intensely loyal and fights hard for what she believes in.  She has been the logical voice of reason when I have come up with another hare-brained scheme, but has been my biggest supporter when I take a leap of faith.  Her drive for education and improvement have been my biggest inspiration even when I go in a different direction.

Supportive of my hare-brained schemes

She has been the best mother my children could ever ask for.  She patiently walks Evan through his questions when I can't seem to explain things in a way that makes sense, and reads with him for hours at night.  She's better equipped than nearly anyone when it comes to taking on the system and getting Caitlin what she needs - her recent travails with the Newhall School District transportation system really proves that.

The best mother these two could ask for!

And to top it all off, even though I don't always tell her the way I should, she's only gotten more beautiful over the years.  She has a smile and a look of love in her eye that no one gets to see but me - and I am forever grateful.

Our amazing family

Motherhood - you win some, you lose some: Moments at the annual physical

It's that time again to do the kids annual physical.

My genius self figured that having the kids' physicals done at the same time would save time. I didn't account for the stress I would be under and/or the feelings that the boy would have about it. It seemed simple enough - get to the doctor; get them seen & then head back to work. Yeah, not so much. The girl complained each time my attention was on the boy, and the boy, well he was so worried about being "naked" with strangers, that he was asking billions of question every 2 seconds. One particular conversation went something like this:

E: Mom do I take EVERYTHING off?!?

Me: No, just down to your underwear. (while I dig for my keys- then realize I don't need them)

E: What!? Aw man why?

Me: To make sure you are growing well and nothing is poking out weird. (while C wants juice/milk/water.. i don't really know at this moment because i am also driving)

E: Will she take my marker out? ("marker" is his birth mark located in his buttocks and looks like our CX-9)

Me: No, but she will need to look to make sure it's okay and not too big.

E: Oh.. but she has to look at my privates too?

Me: Yes.

E: Oh mannnn.. will she have to touch it?

Me: Really trying not to laugh and also trying to calm C down... Yes a little just to make sure it's okay.

E: Ohhhhh....mann.. but can't I just tell it's okay?

Me: Sure, but she will still need to look at it to make sure, because she is the doctor and she will know if it's okay..

E: oh..ahh.. what about my butt?

Me: Maybe... (C stop that I can't hear your brother I can't concentrate on driving).

E: Mom... Mom.. ..ah... remember I used the bathroom earlier.. (this part we were already on the doctor's office inside waiting to be examined).

Me:yeah.. ah huh.. wait.. okay.. what honey? .. distracted because I was down on the floor reach for the crackers that feel and at the same time giving C her demanded stickers.

E: I forgot to wipe...

Me: What!?! what do you mean you forgot to wipe!?!

E: (embarrassed now) Yeah.. I just remembered 'cause I smell funny..

Me: OMG! you're kidding me right? trying really hard not to kill my kid, embarrassed him and me in the process..and how did I miss that? oh geez....

E: yeah.. what do you think we should do? (Son if you read this in 10 years time.. please remember what your mother had to do for you..LOL).. yeah I am not going to write in detail what needed to be done here, you get the picture.

I don't quite know how I survived but needless to say both kids are relatively healthy. C is 26.6 lbs and 31 inches tall (woohoo!) Evan.. Average for his Ht but 90th percentile with Wt! Yeah.. that is one of the reasons I started the bento lunches, and karate classes. Of course it becomes more serious when the doctor tells you this and even encourage you to take even seriously. So, I drove out thinking what could I do to improve the heath of my child? I was so focused on the what.. and also trying to figure out lunch for them and me as I need to get back to work soon.

1 hour later... looking at my drink I realize I could have done better than Chic' Fil A for lunch for me and the kids.. Oh geez! I had one of those guilty moments. I have been focused on one child and her needs and feel that I have neglected the other. Is that why he is overweight? Is that why his "marker" needs to be seen by a dermatologist?? I can't help feeling that I failed again as a parent. I know, I know, I am my worst critic but sometimes I can't help but feel that I am not doing enough, not paying attention enough, not super-mommy enough..lol -- maybe tomorrow I will win my motherhood badge back ;-p.

Cheers, Cherylle

Waiting for the doctor

Still waiting and now naked and ready..lol