Friday, August 9, 2013

Participate - Donate - MAKE A DIFFERENCE

Tomorrow will be the third annual 5K to CURE SMA. This year we are raising funds for the Gwendolyn Strong Foundation. (www.theGSF.org





Denalli requests that you come out and support this event. Denalli herself will be racing in her power-chair and Ryka will be pushed in a stroller. 




Look at her GO!




Why not participate?!? YOU have the opportunity/privilege to WALK or RUN! 





Why not show YOU care about THOUSANDS of other kids that will never have the chance, the opportunity or strength to walk or stand on their own? 




What a HUGE gift you have. You CAN WALK! 



5K=3Miles


 Walking 3 Miles=1 HOUR


1HOUR= changing the LIVES of so many!




video

 Participate- Donate- MAKE A DIFFERENCE


See you tomorrow: 7:30am at the Durkee Lake Boat Dock. 


BE THERE! 

Tuesday, August 6, 2013

A little bit of Fun


So a while ago, a kind friend let me borrow her Maxi dress to wear to a special occasion. (Thanks again Megs!!)  Before that day, I had never worn a maxi dress, or even been remotely interested in EVER wearing a maxi dress... or ever thought about the slightest possibility of me trying on a Maxi dress... Why was I so opposed to a Maxi dress?!? I do not know. Now that I have experienced the comfort and goodness of a maxi dress, (and put my boots and jeans in the closet for the day) I just can't seem to get enough of them! :)



Here is a picture of the original dress. (and my chunky little 5 month old...)  After wearing the dress, and falling in love with it, my gracious friend let me pack it up and take it home with me. I wanted so bad to re-create another one just like it.


When I got back home, I quickly realized I did not have the fabric that I needed to make the maxi dress I had in mind.... (insert very sad face) Thats when another friend came to the rescue, and gave me some fabric that she had in her "stash busting pile". The fabric that she gave me just happened to be my favorite color (purple) and it was PERFECT for the project ahead. YAY for me (and her!)!! So, with scisors in hand, I carefully laid out the fabric and the dress,  and started cutting and sewing away. After an evenings' worth of work, this is what I was able to re-create: 




I absolutely LOVE it!! I'll have to make a few minor adjustments to the next one I make, but in all, I think it turned out just right! 






I LOVE the feel and the movement of the fabric. Also, it isn't very often I get to wear something that fits me in the waist AND length. So FUN!!  






It seems to work very well as my "mama hippie dress"... My little boy seems approve too, as he compliments me every time I have it on. :) 


What are your thoughts? 


I say: 

Cheers to good friends and great Maxi dress' :) 




Friday, August 2, 2013

SPINAL MUSCULAR ATROPHY AWARENESS MONTH

Thats right folks, August is SMA Awareness Month! What does this mean? This means we need to rally together to let the world know about SMA, so that the horrible disease can be cured, kids can be helped, babies can be saved, and long futures can be a possibility.

Seriously people, this disease is so scary and so devastating. Just a yesterday, I was sharply reminded  yet again, how fragile and weak SMA has made my little miss Denalli... I know that that she is unable to walk, I understand that she can not bear weight, lift heavy things, take caps off of most markers, wash her own hair, wite with a pencil, dress herself, get out of bed, pour syrup on her pancake, climb up on the couch, swing in a normal swing, cut her food, put her shoes on, go the restroom alone, or run across the room to snuggle up on my lap and give me a hug. Yes, I get it... she is fragile. And yet, every time I see something else that SMA has stolen away, my heart aches, my soul aches, and all I want is for her to STOP GETTING WORSE >>>



Yesterday, I walked into the living room where Denalli was sitting on the floor watching a movie. I had Ryka on my hip, and needed the Wii remote that was laying beside her, so I asked her to hand me. She eagerly grabbed the remote with both hands, then with all her might she struggled and struggled some more to get it into my outstretched hand. 




At first I was impatient with her because for a fleeting moment it seamed like she was stalling, but then I quickly realized she was serriously STRUGGLING to lift the remote above her head. For a moment, I just stood there, unable to say anything, with a flood of tears burning behind my eyes. My mind was screaming, "NO, She is strong than that.. it is just a wii remote... ". I then reached down, supported her little hand and helped her lift the remote high in the air. "uhg, thanks mom", she said with a sincere smile, "that was heavy...".





I quickly thanked her then left the room to let the flood of angry tears and frustration go. I really do try not to let her see my heartaches of wanting "normalcy". To her, life is great and a wii remote is "really heavy".  After a while, curiosity got to me, so I grabbed the wii remote and went and put it on my baby scale... Do you know how much a wii remote weighs?!? To be exact, our wii remote weighs .36 pounds or 5.76 ounces, or simply put- it weighs less than 1/2 a pound... Because of this genetic disorder and because God has a plan for her life, Miss Denalli- at almost 6 years old- struggles to get 5.76 ounces above her head... And in all reality- and she is considered STRONG in the SMA world!!! The little episode that tears my heart in two, is so minimal compared to many other SMA families. A lot of SMA parents never even get to see their child sitting on the floor by themselves watching a movie....  


Wow, perspective is everything isn't it?!?!  



So, like I said before- we have to get the word out about SMA. We have to let the world know that this disease is SOOOO close to a cure and that they can help get the cure here faster too. It is incredible what the drug therapy has done for Denalli. I would absolutely hate to see what SMA would have taken away from her if we were not involved in the drug trial study. We are so blessed to be right where we are today. I just have to continue to remember that everyones' days are numbered, moments are precious and God's plan is everlasting!  


~Thanks for stopping by~