Tuesday, October 23, 2012

My Last Weekend at Home


This weekend was very special. This was the last weekend I spent at home. How can that be? Well, something really big came up and I just could not miss it. But I will talk about it after telling you about my weekend of almost adventures and haunts.


Mommy and Daddy gathered some Halloween movies for me, so on Friday night the countdown for my fun filled Halloween began. I watched Casper, Haunted Mansion and Mickey's House of Villains. I was not too crazy about them, but did not complain much. I guess I just felt like “going with the flow”, after all my parental units did spent some time trying to give me something different... I am not a brat, so I payed attention and had fun.


On Saturday I woke up early to get my weekend occupational therapy in the morning. Roze was quite chatty (she always is), and then Daddy finished my respiratory therapy, bathed me and got me ready to get out. He dressed me up with my old Alice costume, which I rock real good. I heard the screams outside, so I knew my sister was also getting up and ready to go. After a while we were all in the van and off we went... to get burritos? Ok, someone please give me a map! I thought we were going somewhere more... entertaining... Turns out that thanks to some construction there were some detours and we got a bit lost... Well, lost enough to be really late for a long trip, so Daddy decided to just go get food and drive around. I was not happy about it. I may not be crazy about Elmo, but I dig the Count... My sister was really upset at being in the car seat, and then I was upset we were not going to Sesame Place. Mommy reassured me we would go on Sunday, or next weekend.


So... We came back home... I met a neighbor and her twin kids. The whole trip to the border thing made me a bit tired and I took a power nap. Afterwards, Daddy woke me up for my night respiratory session and a movie... this time Nightmare Before Christmas. Hmm... I'm on the fence about this one, I like the songs (very catchy) but I find the whole thing very creepy. No one can take the place of Santa!


On Sunday we all slept late. That gave me the queue that we were not going out... I heard Daddy was not feeling too good so he slept for the whole afternoon. Mommy took the chance to get in my room, put more movies, and start changing things around like she always does. She put all my schoolwork in a wall (and yes I was fighting about that... Don't mess with where Mr. Farina places my stuff, thank you very much!). She made up excuses and off she went to put it all in one wall... Le sigh... I rolled my eyes and kept watching the movie marathon. The Black Cauldron... Gosh, all this oldies! Some are goodies, but come on...


I heard Daddy went out to get some groceries, and Mommy stayed hovering around me changing my princesses poster for the Wonder Pets trio. Awesome! My heroes were back were they belong, in my wall. That made me content. She browsed some books, made comments about the movies (which I tolerate when they are not that continuous...). Daddy came back, and got me ready for my night respiratory therapy. I know... I have to go to sleep early because I have classes on Monday... So, I set to watch a last movie and then therapy and sleep... After my mandatory vibrating hour, Daddy warned me about his “starting” the therapy, but he had to go to the bathroom. I sighted again... But then...


Something happened. Something different. I felt such a sudden weakness, and it really scared me... but then I felt something, someone, holding me so tight that I was no longer scared... I was in awe. I heard a voice in my mind, calling my name... a sweet voice... sweet but stern. I wondered who was it. I turned to see... and I got the biggest surprise of my life! Did you read well? I turned to see! I turned! And as I did so, I felt the urge to get up and stand... And I did!!! Was I dreaming? Was it real? I was still in my room, and I turned to see that although things looked blurry there was Daddy and Mommy fussing over me... Then there was people fussing over me... I got so sad... They all looked so desperate! I tried telling them that I was fine, that I could stand... Then I wondered how I could stand there when I was looking at myself on the bed... I heard the voice again, calling me. And all I could say or think was “But Mommy... and Daddy...”. As the voice answered so very sweetly “It is time”, I felt some tingling on my back... and I was stunned to see how a pair of pure white wings sprouted from my shoulders! “I need you”.


I saw that my room was empty. I was not in that bed... And there was no one there, all had gone. I saw a light over my bed, going through the ceiling... and clouds, and a rainbow... and more clouds... and the silhouette of other kids that were flying around... playing... giggling... enjoying being free. I really, really wanted to join them! I had never felt this light before... I had never been in flight before... I had never moved on my own. I opened my mouth and I heard myself saying “Wait... wait for me!”... And I suddenly realized that they halted in their flight and... they heard me! They heard my voice! Now, this all MUST be a dream... Standing, walking, flying, talking... I can't really do those things... Or I couldn't, not in my... old body...


Thinking about my old body made me feel a sting of pain and sadness in my heart. I looked back, and through the clouds I saw Mommy, holding my hand... crying... I wondered why she cried. I was fine. Then I looked into her eyes, and moved my little fingers. She smiled. I heard her telling me “You looked at me! You moved! You are going to be all better”. I answered to her... but she could not hear me anymore. The clouds shrouded everything around us.. I could still feel her warm wands caressing mine... I heard her singing to me, that same song she always sung to me since I was born... And then I could not hear her singing anymore. I heard machines beeping... I felt people rushing... And I finally heard her saying “Stop. Stop it all. Let her be free.”


All was silent. I felt at peace. Through the clouds I found Mommy and hugged her... Daddy arrived, and I hugged him too. I kissed my beloved sister in her forehead... I smiled my biggest smile, although I was not sure that they could see me. I opened my wings so they could see and behold their beauty... I still was not sure that they could see me. But... I did see everything afterwards... I saw how they cared for my old body. I saw a priest coming in to make me a soldier of God... which I already am. I saw Mommy and Daddy and Kali holding each other very tight... I felt the warmth. I felt their strong love. I felt everything.

I am free now... A winged soldier of God that vowed to watch over my family to make sure they are alright. I had mentioned earlier that this was the last weekend I spent at home... Well, in a way, and that depends how you see it... I will rephrase that. This was the last weekend that I physically spent at home. I know that wherever my family is, I will be there. And something big did came up, now I am their guardian angel after all! I am free... to be wherever I wish, I can stand, I can move, I can talk... My wish is to be with them, forever.

So here I am... inspiring Mommy to write my last post, so you all can hear my voice and know that I am fine.

I no longer have SMA. I can do anything now, and have no pain or anger or fear. I don't depend on machines to breathe. I don't need a stander or a power wheelchair. I no longer have to ask anyone to move my body... Look, Mommy and Daddy, I can move without help!!! And I can fly!!! And I can speak!!! I can scream!!! I am so happy!!! I just have to figure out how to add a splash of sparkly purple into my wings and robe... Yup, always the diva!


I hear that my family will bring my old body back to my homeland, back to Puerto Rico... You know what that means? Soon I will also help them enjoy nights full of stars and the sweet caress of salty wind. That... is my gift to them. I love you all. I love you... Always.

PS Love. Love everyone with all your heart. Live intensively, enjoy your family... and love.

"Por el campo voy al amanecer
cuando el sol despierta y resplandece...
Y su tibio calor me despierta el anhelo
de una vida limpia y sana...

Sube la montaña, caminante,
lucha por vivir y no te canses
porque el sol que infunde el calor
te dará su fuerza y valor.

Caminemos siempre adelante
lucha por vivir y no te canses
porque el sol que infunde el calor
te dará su fuerza, caminante!"

-Deedee's song & lullaby... Theme from the cartoon Remi.
_________________________________________________________
 
Deirdre Valeria Medina Rivera
Aug 17 2007 - Oct 22 2012
Earned her wings at 4:55am

Funeral Services in NJ and in PR will be announced in this blog.
For donations towards funeral expenses go to our GO FUND ME page.
_________________________________________________________

10 comments:

Lilloslullaby said...

You are genuinely the most amazing little diva ever - I am so proud of the strength you have given your mommy and daddy - they deserve to continue to be stroung. They love you like no one will ever love another. Spread your wings baby girl, and fly high and proud - because your physical life was not in vain. You've taught so many the power of love. You've touched so mnay lives, and inspired all of us. God Bless you always - as I know He will - and watch over your mommy, daddy, and baby sis always... Much love always The Lillo Family...

CureSMA4Stella said...

Ilove this post though I am bawling my eyes out in a McDonald's parking lot. Again u continue to be an inspiration. Love u guys!

Karen Farris said...

This was beautiful. I can only imagine this is what my son Matthew said when he passed in 2011 from SMA. I can see the both of them running all over Heaven having a great time. They probably haven't stopped yet. My thoughts and prayers are with you and your family. May God be with you and give you peace.

K.E.'s EOS fight said...

I'm so sorry for your loss

I remember your beautiful family from Starlight Camp

God bless

Brandy said...

Love you precious angels and I'll miss seeing your grow up so much. Please watch over the ones that love you so much and comfort them. They are hurting so much right now, but happy you are now SMA free.

Mariluz Medina said...

This was the most beautiful post I have ever read about my niece earning her wings. I'm so sad about losing someone in my family but I'm so happy that my brother had such a wonder daughter like you Deedee. You will be missed
God bless you.
Love , Mariluz Medina

Lizzy's Nina said...

Your post has me crying my eyes out.
I am so sorry you have lost a little girl at such a young age. She is a hero, sweet inspiration to so many and was so lucky to have you and her Dad as her parents. You were lucky to have her also.
No one understands how truly special these kids are but us the caregivers/parents. They are gift. A special gift from God. (( Hugs))

Justin said...

Yous touched me to the bottom of my heard. The sadness i felt by reading this post is undescribable. I was crying constandly cause i could feel the pain of the writer who put all the love,strenghtness and sadness into this lovely post. This Blog is fabulous.
Sending you all my prayers from germany to the whole family...
I can't find any words...
Rest in peace little Diva ♥ Feel free!
God bless
Jasmin

chantal smits said...

Deedee, i will miss you're beautiful story's, you're one of a kind! I'll hope you are enjoy you're new body, without SMA!
Take care of you're mommy and daddy and you're lovely dragon sister!!
I wish you're mommy and dady a rainbow to comfort them!

a mother ones tell me that there are thick books with a few great story's and small one with a lot! Well i think you know witch one you're are!

I'll wish you all od blessings!

A greet and big hug from the Netherlands,

Chantal

Chantalnoordermeer@hotmail.com

Eva Zimmermann said...

U wrote this increddible great!!!! I cant even imagine how hard this situation was, and also not how hard it was to write about it. But what u wrote, oh boy, this makes my heart full of tears. Tears cos its so sad u lost ur princess, but also tears cos it makes me so happy. Kids fly home to God, in his loving arms, all happy they finally can move......
Thank u for that!!!!!
Big hugs!!!