Tuesday, March 13, 2012

Positive Possibilities

This year had a rough start, but it seems that now things are making up for it all! March came in with a bang!  What am I talking about? Keywords: Make-a-Wish, iPad, power wheelchair, and meeting a very special friend. Here we go!

Some days ago I got a notice from Make a Wish that I was granted the right for a big wish! Imagine that! Now I have to think what do I really want... Big wish! Big idea! Gotta ask Pinky-dinky-do for help on that one! Of course I do have some good candidates to make my dreams come true... I love Pocahontas and Mulan, I love Kai-lan, I love sea creatures, I love space... I love princesses, I love Wonder Pets... What to wish for... Mommy and Daddy showed me a coloring book with some wish ideas, and I know something amazing will pop in my brain. I am just puzzled, no one has ever asked me about making a big wish... I just make my normal birthday wishes, and I pray hard to God for so many wishes to come true... One big wish... That is my next task for the rest of the month.

With this wish granting thing also came a big invitation to visit the Samuel & Josephine Plumeri Wishing Place, the Make a Wish castle (headquarter of MaW in NJ). The act of wishing should be a uniquely magical moment, an event that is somehow out of the ordinary, taking place in an environment free of limitations, confinement, or stress. This is such a place, and it is simply AMAZING that me and my family will get the opportunity to go there... I just KNOW that my BIG IDEA and BIG WISH will come forth there! I just know it! And I'm so happy! Good news, at last!

Following the happy frenzy of knowing that I have a big wish to wish for... I also got a notice two days ago that I won an iPad 2! Imagine that! I've been dreaming of having an iPad to meet so many occupational therapy goals, as well as to be able to communicate while on the go... I thought I would never get to have one. And then, on Sunday, I got this message in my email: "Congratulations! The Gwendolyn Strong Foundation (theGSF) has selected Deirdre as a recipient of our "Project Mariposa" technology grant program. As a grantee Deirdre will receive an iPad 2 and a $50 App Store gift card. We were incredibly moved by your application and we hope that this grant opens the world for Deirdre for years to come". Imagine my surprise! And imagine my happiness!!! I will finally be able to actually use one! I will finally be able to show just how mighty my fingertips are! I can't wait for it to arrive! I am so happy and so grateful! I just know this little thing is a big step towards more independence. Look out, World!


Today I had an appointment with the pulmonologist, and imagine my surprise when I spotted someone I see all the time in my computer! My online friend Mary was also there for a checkup! Getting to meet her was so cool!

I also had the Permobile guy and the ATP visit me today. Measurements were taken, and hopefully soon I will get to have a test drive... I'll think by my next birthday, if I get lucky (fingers crossed).

Mommy is working on getting some aquatic therapy and hippotherapy for me. It has worked well for other SMA kids, and we hope it all works well for me too. But first she needs to get the services in place... She is trying to settle things up with the school people, but they are failing big time in terms of my regular services... I don't know if they will actually be able to do anything else... PT and OT are ok, but I have not had my SLP for four weeks now, and there has been no AT assessment since classes began. The video-conferencing saga keeps going... It's all very dissapointing... Mommy is trying to make things happen... I hope things get back on track soon. I hope everyone sees that it is not just that I want these services... I actually need them. I also hope that somehow I can get to the camp at the Museum in Summer. It is one of those little things that made a big difference in my life, and I would definitively love to go back... I'm praying that the Department of Education sees the light and get to agree on things. I just want to move forward... I am tired of moving backwards or not moving at all!


As you can see, there is not a dull moment in my life. I'm using my ActiveCycle, I'm enjoying many St.Patric's related themes, I've been brainwashed by educational videos, I am loving my figit friend, and my new books rock (Mommy got me a bunch of books to revamp my library)! I hope that Springtime doesn't make things difficult (a bad allergy season is ahead) and that even more positive things are soon to come true!

Thank You for so many blessings! Each day You make certain to take care of me and my people... I am humbled by all the things You do for me. Thank You for carrying me in Your hands at all times, for protecting me and loving me so! May everyone who needs You feel You as strongly and real as I do! Amen.

1 comment:

Spinal Muscular Atrophy - Shira Fisher said...

You guys are awesome!!! Give D. a hug from her Canadian friends!