Caitlin's first, long awaited haircut!

Somehow Caitlin managed to get to be three and a half before we finally felt it necessary to get her hair cut.I'm sure it's at least partly just an attempt to deny that she's growing up, but it's even more a result of the fact that she looked so darned cute with her hair hanging down to her butt. Sucked for daddy trying to get her ready in the mornings tho, since I'm not really adequately trained to handle pretty little girl pigtails :-)

Anyway, we decided that we should finally get it cut before the holidays, and since both parents were off work and could be there it was the perfect time. Caitlin was really all for this plan until she actually got in the chair to have her hair cut, but when we explained that it would make it easier for other people to see her earrings she was back on board.

The place, Cool Cuts for Kids in Bakersfield, was a load of fun fire both kids, with loads of movies and video games for them to play. Caitlin even tried playing a snowboarding game while she was waiting, and was almost doing better than her mommy at it :-)

One of the nice things about waiting so long for her first cut, tho, was that there was plenty of hair to save from it for the baby book!

Published with Blogger-droid v1.6.5

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.

Published with Blogger-droid v1.6.5

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

First day of school X2

OMG! I dreaded this moment! Not because of the event but the work, the stress level and the "what ifs" moments. So yeah, first day of school.. the plan was to first drop off the boy then the girl. The boy starts at 815 and the girl at 840. Seems doable, but with cross town traffic? Yikes! I can do this. I have done this..no, wait! This is X2! More pep talk with my self and constant grunting towards Mikey to stop checking other people's tweets while driving or responding to text or what not..biggest irritation of mine..can you tell? but that is for another post.

So, I wasn't worried about the boy. He has after all done this before and with a new school what could go wrong? Right? Oh boy, the traffic mess was from hell. Thank goodness certain timing worked out that Mikey was able to help. While at a traffic light turning left to the school destination, the boy and I got out of the car to dodge traffic and walk up the hill to school, leaving Mikey to fight to find parking if that was possible. We were not alone in this madness. We didn't check what classroom he was suppose to be the day before, and I completely forgot the layout of the school. Evan and I were slightly lost looking for Rm 105. A teacher tried to help and tell us to try to go this way and that but all the exterior doors were locked! Urgh! Finally found it. He was late for a good 10 minutes. The teacher was kind enough to allow this poor mother to take a few pictures of her son as he tried to settle in to his new school/classroom.

Round 2.. am I ready? Well I better be because the girl was super excited. While she sang "it's Caity's turn" in the back of the car, we dodge and weave out of West Creek Academy traffic hell into a 20 minute commute to her school location. I was eager to at least see the bus loading area in the hopes of catching Bus #5.

The bus was there! Awesome! (oh please let it be there).. now the Director of Transportation did say he will only call if the seat did not arrive or he had problems with it. He didn't call so.... it must have arrived overnight? Right?

With much relief it was there! Woohoo! It was prefect! Being the mad woman that I am, I had to follow that bus once she was out of school, but other than that it was a good day Times 2 :-) I have created an album on Facebook that has both their pictures during thisr transition, but I leave you with a picture of Caits in the "car" seat specific for her traveling needs, as a follow up from my last note.

Now off to complete the same forms that I have completed before they started school ...AGAIN! Can't our school go on-line system? Urgh!

It was worth talking with the Director of Transportation.. It was a perfect fit for my Caits..

(First Cherylle Post!) Car Safety Seat versus Me!

I tried not to be too upset, but really? I do remember the days when I was the service coordinator advocating for a parent’s rights under the law/regulations, and I thought I understood the parent’s frustration then with the system. However, today, I was that parent. Today, I was not just frustrated but angry and downright pissed off!

I really didn’t know who to be pissed off because everyone seemed to be pointing at someone else. Caitlin's IEP last month seemed to go okay. I knew, though, that I would be having an issue with the transportation part, but wasn’t really sure at what level. So I accepted that the IEP just stated “door to door” transportation with no mention of car seats, because “the transportation” people handle that part of it (or so they told me). Yeah right! I knew better, but I didn’t push. I figured if it said “door to door” it gave me enough leverage to argue later about the details of how this would be possible given the size of my child.

So here it is, two days before Caitlin is supposed to start her Early Start program with our new school district (Newhall, which I haven’t been happy with since Evan had his troubles - that was the reason for the first move, and the doubts about this recent move), I found out they DO NOT have the proper bus safety seat for her! I had an appointment at 8am with the Director of Transportation, but he was late, and I had been told to go to the wrong building. Fine! I was so ready to yell and scream at this idiot for his lack of consideration and laziness. I was ready to take names, numbers, and raise all other kinds of hell…then I met him. He was apologetic and moving slow, and then I realized the man was ill. Oh Geez! I had to stop and think that even with my current need to provide safety for my child, I do still have compassion.

So I went through the most frustrating part – subjecting my child to trying on the seat “harnesses” that I knew were too big for her size. We even tried the extra-extra-extra small size just for good measure. It is still too big. I tried to show him the link on my phone (stupid phone can’t show the stupid Flash picture) of the type of safety seat I was looking at. He argued that a “car” seat will not fit or secure safely to the bus seats because of the angle. I agreed and explained that that was why I needed to have this seat on the link on my phone. He wasn’t really hearing me. He then said, well if you have the car seat you will just have to have it available. I told him I do have a “car seat” but that it is just a normal car seat, and I am not giving the bus a “car seat” knowing that it will not securely latch to the bus! The type of seat she really needs needs to be special ordered and with 2 days left? What are your plans, I demanded? I was really taking lots and lots of deep breaths; he was, after all, the guy who could authorize the solution my daughter’s needs.

I tried to explain the reason for the adaptation and Caitlin's dwarfism diagnosis. He interrupted me to state that “Dwarfism runs in my family”, and (after taking another deep breath and using my nicest smile), when I responded “oh really, what type?” he looked surprised and hesitated to answer me, and finally just said, “ I don’t know”. I kindly informed him that there were over 200 types, but when it comes to Achondroplasia, I can help if he is interested to know more about it because that’s what Caits has.

He smiled! I mean really smiled and then actually looked at Caity. I then asked if we could go to his office to look this safety seat I had up online so he can see, so we could be both in the same page, and he agreed!

He asked for the name of the website and was surprised to find that it is the same company he orders the “harness” from. Then, instead of telling me he would be in touch or dismissing me to come back again at another time, he called the company while we (Caits and I) sat in his office waiting. On the phone he requested the specific safety seat from Safe Guard recommended by Vita Gagne (thanks Vita..muah!), specific to Caits' measurements! He asked them to overnight it (yes, overnight!) and will call me tomorrow if he doesn’t get it or he is not happy with what it looks like.

Wow… I thank God for my patience today and giving me compassion when I really didn’t have time for it!

For my POLP Friends and Family.. this is the link
http://www.safeguardseat.com/industries/school-transportation/add-on-restraints/star.html

Good Luck!

Cherylle

No pictures please!

Wordless Wednesday

So, last weekend was Caitlin's third birthday party! Yes, I know, a lot has happened since my last post, but if I get into all that here I'll never get this post done, and I'll never get back into the habit of blogging again. A bit extreme? Perhaps, but probably true anyway :-)

Anyway, our little Caitlin pulled herself right past her third birthday - she's even replaced her cute little habit of holding up two fingers and stating "I'm Two!" with holding up three(-ish) fingers and saying "I'm free now! We had a big shindig in our new backyard, complete with bounce house, Cinderella cake, and takeout from Vallarta. Lots of her friends came - neighbors, friends from Early Start and Town & Country Farm School, local LP friends the Thompsons and Caitlin's favorite babysitter Ariel & family, and POLP friends the Cortez's from Oxnard, the Dinos from Arcadia, and the Moskovic/Erenea family all the way from San Diego!

It really was a blast to see everybody - our life has been so busy lately that we've really missed spending time with friends, and since we missed the national conference this year we've really missed our LPA family. We're working on plans for the D12 fall regional conference, though - we're really looking forward to seeing everybody there!

I tried to upload like 16 pictures for this post from Picasa, but i obviously haven't figured out how to do that correctly yet. Still, though, here are some pictures of Caitlin over the last three years - she's changed so much!!

Stay tuned - I don't have many pictures from this weekend (too busy doing the party, and not enough taking pics!) but I'll post a few tomorrow that pare' Stuart took from Sunday morning with Caitlin and Justin goofing around. See you then!