Tuesday, August 18, 2009


I’m a big girl now! I just turned 2 today! God has blessed me in so many ways, filling my life with special people that go to great lengths to make me smile. The journey has been rocky, but here I am: A happy, strong, courageous diva that keeps on growing and learning and amazing everyone around me! I may not be able to walk or jump, but I go places! And boy, do I keep EVERYONE on their toes! Ever since I was born it was certain that I would go far… and would change everyone’s lives in a big way. Every day is a new challenge, and somehow I turn things around so I help teach people some deep lessons about the real meaning of life, and the miracles that happen every day and people dismiss or ignore.

To tell the story from birth to where I am today may get uncommonly long… My two short years have been an ongoing quest to prove negative people wrong, to show the world that the smallest of people can make the biggest difference, and to remind people that there are no boundaries or impossible missions for God. I am surrounded by love, and THAT has made the BIG difference. When darkness threatened to fall upon me, FAITH and BELIEF and the hard work and prayers of so many have pulled me through. I am so young, yet I work hard every day… just to breathe, just to communicate, just to share and learn… So many take the sunshine for granted… Not me. I see sunshine and I see that God’s promise of a new day after stormy nights is true and real.

This is my second year of fighting Spinal Muscular Atrophy. It has been difficult at most times and tiresome and frustrating… long hospital stays have taken strength and have tried to weaken my spirit as well as my parents and my caregivers… But today I prevail as I didn’t give up. I may not know much about the serious stuff that grown-ups know, but I know that if so many people give so much love to me for free then this life is worth living. Prayers and tears, songs and smiles have given me the will to go on. Just when I could have given up, I heard Mommy’s songs and Daddy’s stories… As I closed my eyes angels visited me letting me know of so many memos and letters that so many friends send to God so He would let me stay… just because I made their lives better… just because I could do so much… They all let Him know all the time that I still have a mission to fulfill. And boy, did He complied! Not many kids with SMA live this long, and yet He let me do so. He has big plans for me, I know it!

So, this weekend was the BIG, OUTRAGEOUS weekend. Mommy was working on some decorations for my room for the whole week. She also delivered! She made these poster sized images of the Wonder pets that look so bright and cool! I know she divided herself between that and her class and it was a bit hard… but I knew she could pull it off. Ha! She would do anything for me! :P On Saturday morning, one of the staff guys from the nursing company visited me, as he wanted to meet us all. It was a very nice gesture, and made me feel quite important. Daddy explained most things about me, and Mommy prepared a CD for him with SMA information and my daily care handbook so he could take it all back to his office and share it with the others.

After that, Mommy prepared a bundle of information and a CD for the Mexican family that is in New Brunswick, NJ. Hopefully that can help them a bit. Then both Mommy and Daddy began the daunting task of organizing all the stuff that I have in my room… Too many boxes of supplies have been stacked and my toys and books needed to be tamed. They even tackled the dreaded closet! Some things were thrashed, others were placed in a box to be sent to my other friend in Puerto Rico, others boxed, and others neatly placed around the room. Before midnight arrived, my room was tidy and most Wonderpets had taken their place up in the wall and all around me!

Sunday morning. Mommy and Daddy gave some finishing touches to the decoration filling up balloons and preparing the goodies table. After midday we had a surprise visit! Some new friends dropped by to bring some much deserved food to my beloved minions and to congratulate me on my special day! So I had the chance to show off some of my hand-wrists moves to Lawrence and to meet his wife, Rhonda. That made me feel something was definitively up… They had to go, but it was nice of them to drop by. I hope they visit me again! Yup, I’m the V.I.P. here!

Mommy started moving my bed, and all of a sudden Stalker Baby appeared in the DVD… No, wait… That’s more like my doppelganger appeared in Mommy’s laptop… Oh Dear! Then I realized it was me! Mommy seemed a bit upset for a bit, but Daddy managed to fix whatever was wrong with the machine, and then I heard that the phone… the phone was ringing! That was so cool! Our families had gathered at Auntie Gladys’s home to celebrate me! They were seeing me as I was seeing myself! Am I high-tech or what! I had Mommy’s family in one phone, and Daddy’s family in the cel… Yup, flanked by technology… I am surprised I didn’t end up being radioactive! NursePeronette and her hubby arrived, and that was our cue to see if the people back home were ready for my celebration.

GodmotherMaria had to improvise putting together everything as Mommy’s package didn’t arrive in time… But she made it (hey, sue her for being creative)! So… GodmotherMaria and GodfatherSteve got things ready, cake and everything. Auntie Gladys was there too, and a neighbor. I heard GrannyEdna arrived, and I also had GrannyMilly in the other phone… After some funny talk, Daddy put up a cake in front of me! He lit some candles, and all of the sudden Mommy counted to three and people from both phones and in my room were singing Happy Birthday to me!!! That was so exciting! But the candles were quite scary… To tell the truth, I was so glad when the fire was out… Hey, I don’t wanna risk my hair or eyebrows for sure!

So, candles out… frosting on my forehead… Daddy being happy… NursePeronette had to go. We decided not to cut the cake yet, as some people had not arrived yet to the PR gathering… Half an hour later, Steve called up. Auntie Ednita, her hubby and Marisabel, and Sonia and DoñaIsa had arrived. After some salutes and talking, they got ready again, and I got another Birthday Song. Yay! That was FUN! Eating and being silly, and getting a song twice in a day... It all doesn’t get any better than that. They all sent me some Birthday Wishes. Here are the videos:

From Godmother MARIA:

From Godfather STEVE:

From Auntie GLADYS:

From Granny EDNA:


I was beat after all the commotion, so I fell asleep as soon as I saw my presents. For all I know, I deserved my sleep. So many things at the same time in the same day can be quite exhausting! Daddy woke up a bit later on, to give me my night therapy. But I don’t recall much… I kept sleeping.

I woke up early on Monday morning, as NurseMashaela arrived. Hey, my birthday is really on the 17th, and I wanted to be ready for action. We read and sang… just girl time being silly… Got my morning treatment and spa/bath. By midday I was ready for my therapy appointment… TherapistPat and Therapist Ellen were to come and had announced it… They arrived, and to my delight they came with a party in a bag! They had cupcakes, they had refreshments, and goodies for me! Once again, I heard my Birthday Song! Hey, this time Mommy recorded with sound! Check this out!

The evening ended with my media rack being completed, so my stuffed dolls and movies are now neatly stacked in the purple rack… and two more gifts. I got a package from other friends from Puerto Rico: Lulú, Ito, Shesian & Paola. It even had a gift from my friends at the ARV-CAA (where Mommy used to work). Wow! That one had some handmade cards that I really like! The Pandora Box filled with much love! Thanks guys! I also got the package from Auntie and Granny. The Pinnochio songs finally arrived! Yay!

And so… Nighttime arrived. Wow! These last two days had much action! I am beat! Daddy gave me my night treatment, and I’m falling asleep as I speak! So… This was my Birthday Bash! I pray to God that other kids can be as happy as I am, as blessed as I am, and as loved as I am.



CureSMA4Stella said...

Happy Birthday sweet Deidre!!! Wish we could have been on your webcast but you were in our thoughts!!! Hugs from Iowa!
Sarah and Stella

Zilotis Valentine Photography said...

Happy Birthday Dee Dee. Looks like you had a wonderful day.
Wishing you many more blessings this year.