Clothes, Clothes, and More Clothes

To say that Emma is picky about her clothes would be the drastic understatement of the year.

We have problems with panties.  I usually buy between three and four packs before we find some she'll wear.  Some mornings, she spends nearly 15 minutes taking panties on and off to find some that'll work for her.

Pants-  The ONLY ones she'll wear right now are GAP foldover yoga pants.  I have no idea what we'll do when she outgrows/ruins those.  She doesn't like elastic on the waist so these are perfect. Hopefully GAP will make them again next year, if not, we may in some trouble.

The latest issue is socks and shoes.  She wants her shoes to be huge and her socks to be internally "bump free" so this is also becoming a problem.  She only wants to wear the cotton blend gymboree socks with bows on the back that are one size too big. 

I really, really try to be patient, but I have to say that it's hard to stay sane when it takes 30-45 minutes to get dressed in pants and a t-shirt.

I can't imagine what it's like to be sensitive like that.  I also know that some of it is a control issue on her part.  So, then I never know how hard to push certain things.  

Like everything else, we seem to work it out.

I've really been terrible about this

I really wanted to keep this up but I haven't done that great of a job.  I'm going to try to do better.  Even still, I'm sure not to do more than two posts or so a month.  Our family site is www.kidsideup.com which is going through a bit of an overhaul at the moment.  We'll be up and running there soon!

Jolene

The Moebius Conference

My husband and daughter went to the Moebius Conference without me :(

They had a great time :)

Thanks to all of you who played with Emma and talked with my husband.

It's so nice to see so many wonderful adults and great parents with exceptional children dealing with so many of the same issues.  It helps us feel like there are more of us out there than we thought.  More support, more research and more excitement of things to come.

It was great to see the pictures of all those sweet faces, some of which we saw 4 years ago in Texas!

So, we'll all be there next time, I promise.

(Emma's on the right)

My Outdoor Girl

My Outdoor Girl, originally uploaded by kidsideup.

We're trying to get some help for funding to go to the Moebius Conference this summer. I've been avoiding going in to fill out paperwork for a million reasons which all became apparent as I was filling out said paperwork.
It's completely emotionally exhausting. Most days she's just my little Emma, my excited, sweet, smart little girl. Then I'm put in the position of picking her apart. Trying to remember every little thing that's wrong with her and making it sound as terrible as possible in hopes that someone will see that she really does need help. I can't even count how many times I held back tears as I was talking with a very nice lady who was helping me out.
I got in the car and cried, and then I cried because Emma's wonderful and doesn't need my tears, she's an amazing little girl and will surpass me in every way that counts.
What I want to say to the powers who distribute funds for this kind of thing:
I have an amazing little girl. She cuts out intricate pictures that she colors (appropriately and within the lines) with more accuracy than I would even though her four year old hands are the size of a 6 month old and she has two short fingers on her right hand (she's right handed).
I want to say that we've seen HUGE improvements with her mobility with the therapies that we've done. We can't afford them. We make too much money to qualify for medicaid but barely enough to pay bills. Our daughter needs the same therapy that a much more severe child would need but is not severe enough to qualify for disability help.
I don't want to have to make her sound worse than she is. I want to be able to show what I see in her. It just sucks.
We're muttling through and we may even get a little help but it's such a frustrating desperate position to be in as a parent. We've gone in debt for her. Happily. But no parent should have to put their child's NEEDED MEDICAL THERAPY on a credit card.

My Little Emma

My Little Emma, originally uploaded by kidsideup.

So, I haven't posted in a while.  I got the most wonderful letter from lucyjanesthings and it made me realize that I really need to keep this up.

This is Emma's happy face.  Even as her parent I sometimes can't tell the difference between her really happy face and her crying face.  It's getting easier as she gets older.  I'm amazed at her resilience.  In a lot of ways she has had to grow up faster than I would like.  To take advantage of the therapies out there without putting us even further in debt, she goes to pre-school.  A school bus comes and takes her away to school four days a week and brings her home.  Kindergarten will be no big deal.  I guess that's the good part.  She gets speech and occupational therapy every day she's in school.  It's been invaluable.  It's still hard for me to send her away to something that I feel is totally voluntary.  

As a parent you'd do anything to make your child's life easier and any thought that I have beyond that is a mess.  She's a tough kid, she's outgoing and loves getting dirty.  I'm very proud of her.

Whistling

I don't know if Emma will ever be able to whistle.  I guess in the scope of things, it's not that important.  She asked me to whistle the other day and I did.  Then she was saying that she can't wait until she's big enough to whistle and I really didn't know what to say except that it's a pretty hard thing to learn to do.

Fall

Most days I see Emma as my sweet little girl. She runs around like any three and a half year old, full of excitement and wonder at everything she sees. Yesterday we were going for a walk at a construction site for another home they're building in our neighborhood. Emma tripped over some dirt and rocks and skidded her face on the ground. She still doesn't have a lot of strength to keep herself from hitting the ground. She had gravel on her face and in her mouth, the worst part is that she can't blink and there was so much dirt in her eyes. We carried her home and had to hold her down screaming while we washed her eyes out with drops. I realize that these accidents happen to kids that age all the time, it just seems so much harder with her weaker muscled and her inability to protect her eyes. It's funny but for the next couple of days after something like that happens I find myself laying in bed at night thinking about how different her life will be than mine. I have to say that this feeling doesn't last for long. Soon I realize that those sometimes huge things are really small and her challenges will make her a better, sweeter, stronger person than I could ever hope to be. I know she'll think about her challenges a lot less than I do, as a parent wanting to make everything perfect for her child.