a disgusting topic, still funny none the less

While I haven't posted too much in the past few weeks, I found it funny to just go ahead and post this quasi-milestone....Sadie has been getting a complete giggle out of farting. There I said it. When the moment hits her, she will look dead at me, fart, then just so big and proud, she smiles, and follows that up with one of her classic squealing giggles.


With that tidbit of information out there in the universe, I can fill you in on the past few weeks and how summer is going around here.


I honestly haven't felt like writing much because of my new dilemma with making sure I paint a real picture of life around her/here. I struggle to stay strong. I try super hard to keep all emotions about the disappointments about Sadie hidden even from myself. When I feel those tingles of pain ripple through my soul, I quickly tell myself to pull it together. I remind myself of all the wonder and gratitude she has brought to my life. No matter how hard I try to squelch those feelings, they pop in and out weekly and on occasion, daily. I can compare it in a sense to the same feeling when you see one of your children nearly fall, that outer tingle on your skin as you reach out to catch them. But this is different this is the inner tingle, the inner fear that no matter what I do, I CAN'T FIX HER. It's the tingle inside that makes your eyes well up with tears and you are a breath away from pulling it together or finding a moment to cry.

And so I wrote that hours ago, in fact it was this morning, but still to reread it before posting, I wouldn't change a word.

On another note, the summer seems a third over and we have been going to the beach, water park, hanging in our back yard, and of course watching A LOT of Disney's Princess and the Frog. Sadie's attendants have made it possible for all the fun outside these four walls and I'm grateful to live in a country that offers services to her. I don't feel paralyzed to the enormous amount of energy it takes to get both girls out the front door, especially Sadie who still requires 100% help to dress, potty, eat, etc.

Both girls did have random fevers last week that lasted about 48 hours and both recovered without major incident.

Overall, we are having a wonderful summer.

Dear Universe

Thank you for the bizarre coincidences in the past couple of days....they are really getting me thinking. Although some say there are no such things as coincidences.....hmmmmm
Sent from my Verizon Wireless BlackBerry

Sonnets

Elizabeth Barrett browning: 685. Sonnets from the Portuguese iv    IF thou must love me, let it be for naught     Except for love's sake only. Do not say,     'I love her for her smile—her look—her way   Of speaking gently,—for a trick of thought   That falls in well with mine, and certes brought          5   A sense of pleasant ease on such a day'—     For these things in themselves, Belovèd, may   Be changed, or change for thee—and love, so wrought,   May be unwrought so. Neither love me for     Thine own dear pity's wiping my cheeks dry:   10 A creature might forget to weep, who bore     Thy comfort long, and lose thy love thereby!   But love me for love's sake, that evermore     Thou mayst love on, through love's eternity.  
Sent from my Verizon Wireless BlackBerry

end of school=beginning of summer

well...one more short week and another year of school will be over...summer school or extended school year begins...it still feels like a toss up to me...driving clear across town for 3 hours of summer school doesn't sound that exciting, but the 2 hour break I'd have would be great. ESY might also mess up our summer plans for the water park and beach, but then again ESY is only 5 weeks....see what I mean...I keep talking myself in and out of it. I guess the bottom line is...what is best for Sadie and the greater good of the whole family at the same time....ok still can't decide...

recent obsession with ice

Sadie has replaced her bubble push talk obsession with ice.  So I took one of her cheaper one push buttons and a photo of ice, I put it in a 4x6 photo sleeve and taped it to the refrigerator.  Every time she wants ice she pushes the button. It seems that she is doing this every 2-10 minutes…. The idea is that she gets an immediate response and hopefully learns to push the buttons to communicate her desires…..hopefully….

energizer bunny

funny how when you make a vow to be honest, that you then reconsider just how honest…even omitting…that’s not honest either is it? So, my last post i made a vow that my blog posts would be real…and here’s the reality.

i took shelbi to the new park on the beach this morning, the one for “all” abilities…and to my happy surprise, i ran into a  friend who has a little girl with Down Syndrome.  I consider this friend to be very similar in personality to myself and we always have lots to talk about.  Her daughter is about 6 weeks younger than Shelbi.

now here it comes…the truth…i watched her chase after her, assist her with all levels of the playground, the slide, the steps, and we followed her around chatting , while she followed her little girl around to keep her safe.  it finally occurred to me that this is EXACTLY what i must look like to all other people when i am chasing after sadie.  i just kept thinking, how can it not be obvious to the people around me that while i chase and follow sadie that it must be exhausting…she’s like the energizer bunny….she just keeps going.  i wonder what other people think when they see us together, when they see us following sadie for her safety. when they see that we NEVER have the chance to sit and talk, that we NEVER get the chance to enjoy the meal with everyone else…….is it really not so obvious?

usually when we go out to the park, cookouts, family functions, most of the time, everyone else is able and allowed to sit in their little *circle of friends and family*…they get to catch up and chat, but with sadie we are in constant movement to keep her safe from falling, putting dangerous things in her mouth, climbing on or standing on objects that would hurt her, holding her hand as she walks across uneven ground.  and i walk and walk and walk and the little energizer bunny just never slows down for a break…NEVER….and…

thank you all the people who have been aware of the never ending following that we do to keep sadie safe and especially a big thanks to Amy and Nanny for helping me have fun at last Sunday’s cook out by following sadie and helping me keep her safe, while also being able to have some fun too.

NUK

I'm adding this video because the OT keeps telling me to use the NUK, which we do all the time and have had for the past 2 1/2 years. This video was taken March 2008..........

I'm exhausted with the same ideas and need new ideas to help her chew, swallow, and reduce the drooling. but when you have a child who could really care less about food and eating and seems to be stuck in the put everything in her mouth phase....well what else am I supposed to do???????