Monday, December 28, 2009


Well, I know, I know... I am a bit late, but hey: Better late than never. I've been quite busy, thank-u-very-much. Between practicing communication skills and my follow up appointments with doctors all around I have quite a tight schedule. I'm happy to report that I have been well, my therapists have been very diligent with me, my visit to the SMA clinic for a complete check was nice and smooth, and I've got all my shots up to date. Family and friends have been all around, through mail and email and prayers. Christmas day was very special, and we got to film some of what went on. Here are the video highlights:



Hopefully pictures speak louder than words (and yes, what you hear in the background is Jingle All the Way... you can hear the Gobernator looking for TurboMan). I am happy, and very grateful for so many blessings. I have a loving family, and people who don't forget me. I think that is what matters the most in Xmas... Love, friendship, sharing... I miss my family and godparents and friends from Puerto Rico, but I feel them inside my heart and that is what matters the most. To all who share a bit of my life: Thank you for being there, for helping me go on in my quest to defeat the SMA monster. Thank you all for bringing a smile to my face and a song to my heart.

Mashaela & Peri, I love you both so much! You guys put up with all my diva tantrums, and care for me just like family. Thanks so much for your patience and dedication, and for the help you give to Mommyslave and Daddyslave.

Sti & Maria, I never forget about my favorite godparents! And I know you both never forget about me. I thank God for you both everyday, as I know that your prayers and love have helped me a lot.

Am I lucky or what? I have 3 grannies! I have GrannyMillie, GrannieGladys and GrannieEdna! And they are all looking out for me, always. I love you all, and pray for you everyday as you all pray for me. I miss you!

Mommy & DaddySlave... What can I say... You are both my constant reason for being alive, and for being happy. You have helped me grow in many ways, and you both believe in me, and encourage me to do great things. And I know that THAT is just what I'll do, BIG THINGS, just because you are both the wind beneath my wings.

GOD: I am grateful for my life. It may not be perfect, but it is beautiful, adventurous, and inspiring in many ways. Thank you for being there for me, unconditionally, always... And for so many gifts and blessings. Thank you for so many miracles, and for being the source of so much love!

Happy Birthday Baby Jesus!


Tuesday, December 8, 2009


Last week was exhausting! I went to Helen Hayes Rehab on Monday to try out another communication device, and after recuperating from that long trip to NY we all went on Wednesday to the Adventure Aquarium at Camden, NJ. Again, just like the Zoo trip, I had no idea of what was going to happen. I was surprised by an early bath by NurseMashaela, then a super feeding. Then NursePeronette appeared as well, and as I was placed in the parachute-like thinguie (the security straps for car travel) I started suspecting something big was going on. We all got in the car, me in the back flanked by Daddy and Mashaela… I am getting the feel for whenever I am in a tight setting I am going to a fun place… whenever I am in a comfy stretcher I am going to an ouchy place (doctors appointments).

Anyway… I got really worried as time passed by and nothing happened. I heard some rumors of being lost… (How can you get lost with a GPS?)… Three hours and a chicken sandwich later, we finally reached the surprise destination: The Aquarium. The fun began at the waiting line, where Daddy scared a baby. We went inside the big building, and I went into a trance. Wow! I felt as if I were back home! There was this big room with a beach setting, just like Playa Santa! And there were stingrays and fishes and jellyfishes… I loved it! I saw all the families of the cast from Finding Nemo… brothers and sisters and cousins of Dory, clown fishes in anemones, the silver fishes schools… even Bruce cousins! I loved the shark tank! And I touched a starfish! I tell you, I was trying not to blink so I wouldn’t miss anything. I didn’t fall asleep until I saw that everyone went for a burger. I knew then that the adventure was over. The trip home was long, too… I slept on the way, and then had the rest of the week to recuperate and keep replaying the whole adventure in my mind! I’ve been watching Finding Nemo and Little Mermaid non-stop for days, of course. Have I got a Sea Fever or what!

So, I can’t say the year ended without me going out for fun. Hopefully, this is a new tradition that will stick for years to come. I gotta keep away from hospitals so this keeps happening. Gotta keep praying hard, so God grant me health, so I can enjoy happy times with all of those whom I love, and who love me so much. Christmas is finally here! And I really feel it! Thank you, God, for so many blessings! Amen!