In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Sunday, April 22, 2012
Make a Wish: My Wishing Trip
This week was another very exciting week. Seems that each day a big new surprise arrives! On Monday 16th I woke up to the awesome news that I would go to the Make a Wish headquarters in New Jersey, which is within a castle! The morning seemed so long as my excitement built up! I took my class, my physical therapist arrived... and I was getting quite antsy about it all. I did not want to be late for my big appointment!
Finally, off we went towards our newest adventure! It was a nice day, and the road was easy. It is almost as if everyone knew and simply plotted to make way for me. It is always nice to see green landscapes and flowers, a sight I often long for as there are no big green patches in Newark. It would be so nice to have a garden nearby... Anyway, we made it to the Monroe Township, and imagine how I felt when we arrived to an actual castle! I thought Mommy and Daddy had been on joking mode, but no... it was a castle... I started worrying about dragons being nearby...
As we went in we were greeted and made feel at home. I absolutely loved the stained glass art depicting a lovely princess (who has no hair as she is a cancer patient, and so represents all illnesses that affect kids on the outside), and a knight (who seems to be fine, representing all kids with illnesses that are invisible to the eyes). Inside, everything is well lit as there is a big sunroof that allows you to see the sky. I could see that there were big rainforest leaves creeping from the second floor... To one side there is a big wall filled with stars! Each star bears a name. The biggest stars represent the people that have made the biggest donations to the organization. I just think so many stars together look awesome! But then I am a big fan of the night sky... Mommy has told me many stories about the starry nights back home!
We went through the rainforest on the second floor, to a room made for inspiration. I felt so comfortable there that I took a 15 minutes power nap! My sister Kali spent much energy running around and making the seat/pillows roll. As I woke up, I was taken to the secret chamber called the Wishing Room. Now, I cannot tell you about what is in there as it is a secret room that only can be viewed by those who are to make a wish... the most important fondest wish on your heart! I went in... and took the magic home with me. I know everyone around me felt the magic. A few things have made me feel so special, and this definitively enters the list. I am so humbled that this has happened to me!
After making my wish we went back downstairs and took some pictures as memento of my special day. I was told that now I have to wait patiently, and keep my wish within my heart, so it comes true. And so, I will. The journey back was filled with dreams dancing in my head, and the strong belief that there are so many wonderful things ahead of me... I cannot even begin to imagine it all. The good things always put the bad things behind, conquering them. I know that there is so much people working hard to make me happy, my life is filled with love without strings... Courage, faith, family and friends... Now THAT is how you live life to the fullest!
The rest of the week was quieter, although not uneventful. On Tuesday I got a demo for a new stander, the Bantam, and so far it is exactly what I need. I will get to keep it for two weeks. Hopefully insurance will approve it after that... and a new one should arrive maybe for my birthday (yes, I'm being extremely positive here but that's exactly how I feel right now). I also had a neurologist visit just to say hello and goodbye... gotta love my social life. Wednesday and Thursday I had some tummy trouble, but I was back on track by Friday. On Saturday the day went smoothly, watching movies in the living room while trying to avoid my sister (she kept pulling away my mask... I wonder if I should be concerned...). Exciting days, exciting life... That's my life. And I'm only getting started! Look out World!
GOD: Thank you for showing me just how special I am, thank you for bringing so much hope to my family and to my life... and for the constant love that is all around me. Keep on carrying me in your arms, blessing my life and the life of those around me. Amen.
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