Just. Just. Just.

“It’s JUST a finger prick… a quick finger prick…” This is such a small sentence with a big fat JUST. Just, just, just… what a difference just makes. Yes, one finger prick in 1-year is not much, in that case, it probably is JUST a finger prick… but for a little boy that has his blood drawn for calcium checks, feet checked, casts made for new orthotics, eyes checked – “Watch for the ducky!”, dentists appointments, endocrinology, not even starting with his therapies, regular doctor checkups – or simply getting sick? Yep, JUST another of the how many white coat fears he already endures. So if I can prevent one – because he JUST had it done, of course I am going to make a big deal out of JUST another one!

So I did… Ahhh – How strange it is when people think of me as I walk away knowing full-well that some people think of me as “bitch, too sensitive or just plain old picky” – – that’s right, go ahead and think all of those things, that is just fine with me. Because at the end of the day, I don’t go in those offices to make friends… God blessed me with a huge abundance of those fine individuals. It’s those people I typically text or call after JUST another encounter like this one.

And if you are one of my wonderful friends or family members reading this – thank you for all the support you give to us. Whether it’s just a ear to listen or a moment of your time when driving through Downer, to say Hello… we cherish you deeply! God bless.

The Joy Gene… by 20/20 on 6.10.11

I started the first paragraph of this post three times. No..delete. This…yea this…no delete. I want to say what I feel, so I’m going to. No more deleting… no more I should say this, it sounds clever. I don’t care about that.

I watched the 20/20 WS segment tonight. Although I should feel happy, because it has brough SO MUCH recognition to the WSA and it seems we should get more support, volunteers etc. Clearly, touching the hearts of the nation. I sit here at home, on my couch, not even in my comfy clothes yet, with a tear in my eye because of a few things I saw.

See as a mother of a child with WS… I still have to learn all the details of WS like everyone else, all the other moms out there… like they have to learn about their children, but some details about what I can expect as C-Man gets older… I just haven’t put much thought into, or really even seen.

Fellow WS mothers have told me, going to convention is great…you learn a lot, but some of it can be sad too. Sometimes you see things that make you sad. Hmmm… ‘like, what? I thought.’ I see some tof that now. Having to hang signs for your 10 year old not to unlock a door and leave the house. Don’t get into a car with strangers because that’s dangerous. Being told, “Most people with WS don’t live past the age of 50.” That statement hit home the worst.

I’m not saying I didn’t know all of this, I mean… I did. I know our little pumpkin will probably live with us as an adult, depending on his abilities, of course. And I don’t mind that at all either, I love our him beyond measure. It’s just hard to take a look ahead, it is.

I’d like to say I have more to say on that, but tonight, that’s just how I feel. Albeit tomorrow will be fine and I’ll wake up ready to take on whatever else comes about. For now, I’m going to enjoy my Elmo loving, Wheels on the Bus singing, little “Hi!!!!” sayer… everyday… I enjoy it tonight too and thank God for my blessing, but there are days that Williams syndrome scores 1 and I score none. Those are the nights I say a prayer and give it to God, because it’s far to big for this small town mom.

To watch the WS Segment on 20/20 click here.

To learn more about WS click here.

To purchase the brand new movie about WS that was just released today, click here.

God bless and good night.


where in the world are all the wides?

I figured out how to make a lot of money. I mean lots! I might become a millionare if I learn to manufacture and sell infant/toddler/childrens shoes in Wide. I get it, orthotics are not worn by everyone, or possibly even a mere fraction, but that doesn’t mean children in general wouldn’t benefit from Wide shoes. Adults have them… why not the little ones. And, when designing shoes, do they read about orthotic requirements at all? I doubt it. Almost ALL toddler shoes have velcro straps…a big no no in the orthotic world, as the shoes need to be consistently tight and tied for the AFO’s to work properly. Well…velcro can be undone easily (by a child) making the effectiveness of orthotics, well null.

So are Wide, laced shoes out there? Sure! At the lovely store of Stride Rite, a.k.a. $50 bucks and up per pair. We didn’t mind this at first, but it’s starting to get old, not only because it’s so expensive, but because there is very little selection. Not that I feel C-Man has to be a fashionisto, but I end up buying the same shoes over and over in different sizes. Why not add a tish more variety? Is there no market for it? I believe so. Stride Rite is the only company I even know of that sells Wides – I believe Nike has some, but you can only get those at Zappos.com and what really is Wide in their Nike opinion? Not as Wide as Stride Rite, I assure you.

The bottom line is, all feet are different… I hope someone is willing to make a few million and manufacture and market some shoes for children with special needs. I know I would buy them. Oh, and could you make them cost around $25? That would be lovely, and I would even recommend you to a few hundred other Special Needs moms that would be most appreciative.