From My Heart

Another week went by... Days are flying away too fast. The short recess before Summer school is almost over... After the big dinosaur adventure, the week was mellow although with inside excitement (to be nice and polite). Well... Turns out that now I don't have an speech language pathologist, again. This one lasted three sessions. Apparent reasons to stop visiting me: My parents ask too much (asking for professional opinion seems to be taboo around here), and the area is too crowded and dangerous(imagine, this one came in with an escort guard... first time that I see this from my service people). I am still appalled!

I mean, yes I know that my family lives in a low income area, and yes you should be careful and watch your back in the neighborhood... but sometimes people take things completely out of proportion. The “crowd” is the same one I have witnessed here in the two years that I've lived here... same people in the same front of their same apartments. They all say hi to me whenever I get in an ambulance or in my van... And to my parents. Actually they are always asking about me, and praying for me. That some are bad apples, well... Duh. But it is wrong to assume all is completely bad, and that they are out to get you. We don't get involved with them, they don't get involved with us. I see different people daily. My teacher comes in everyday without any complaints, and my occupational therapist comes in at any time (even early evening). Same goes for my sister's people... They have no escorts, take appropriate precautions, and not even the cats mess with them. Some people are just too sensitive, and have too many issues. It makes me so upset, because I really REALLY try to trust whoever claims to take interest in me and my quality of life... and lately I keep discovering that the true interest is just filling a slot and getting paid. I sure wish I didn't have a need for therapists and nurses!

There... Let me compose myself. I try to keep my diva rants happy because I am so grateful for so many things, and my life is so filled with so much love and wonder! But sometimes enough is enough. I mean... I did not ask to have this illness. I did not ask to need therapies and special care. I want to be just with my family and just with my friends. If I could, I would just go back home and be able to share my free time with my grandparents, great-grandparents, cousins and relatives... I miss my godfather and my godmother! I miss the kitties that roamed my parents home... the fresh air, the starry nights, the screams of Mommy whenever she spotted a spider or a snake (countryside people, get over it!). I miss the salty breeze, the sunsets, even the roosters chanting at 4:00am... and the crazy birds that would wake up my parents at 5am with their songs... I want it all back. I want to have adventures in caverns and caves, fluorescent bays in which to float at night, enchanted forests filled with fireflies... and the never ending chant of our coquí! But no... I have to be away from my homeland and the people that I love... to take care of my needs. And I didn't make that choice, my parents did... And I am so grateful for all, because they allowed me to live.

Now... I am intelligent enough to be aware of when something is wrong. I see so-called professionals coming in and out, claiming to know their stuff and in reality they know very little. I see people that do not work because of love to their profession, but need for money... people filled with empty troubled lives. I see lack of love for everyone whom you touch, lack of honesty and lack of compassion. I see lack of kindness and lack of responsibility. I see jaded people that come in and do the least amount required to fulfill a goal that is written in paper, and who bias the real meaning of everything just to do little and get paid much. I see no real caring for a human being. I see constant disregard for me as a person... almost as if I were an empty husk who were unable to understand even the simple language of love. What is wrong with the parade of people that come in and out of my life? What is so wrong that people don't see beyond my physical needs? What is so wrong that it is so difficult to want to help me be independent, and achieve my dreams? I do not ask for pity. I do not ask for money. I ask for caring and for the tools so I can be all I dream I can be. What is so wrong with so many professionals? Nurses, therapists, service providers, doctors... It is an epidemic that begins with the basics and ends up ravaging their souls. That is what I see. All the time. I cannot speak, but I can see very well... especially when it comes to looking into people's hearts.

I had to say this. If you see some sadness in my eyes, this is the reason. Whenever I trust someone, I am let down. I am deeply hurt. I am almost 5 years old, and I have already experienced so much loss, so much pain, so much disappointment... And it all happens because people have hardened their hearts, because it is convenient not to care. Now... Whenever you see happiness in my eyes be certain that it is because I know better than to stop believing. I have a family that may be small, but it is true. I have friends that are quite old and quite far from me, but they reach me nevertheless. Whoever wants to love me finds out that I am more than meets the eye. My husk of a body needs so much help, but my soul thrives by itself. I am here to make things happen. Little young me is here to MAKE things happen. Do not underestimate the power of this diva! Look into my eyes... I change everything.

Last week I realized it was goodbye time for some people whom I wish the best. I also realized that all I need is real belief around me, so I am not crossed anymore. Whoever doesn't believe on me, and whoever do not think I am important enough is missing on a big thing. Services will come and go... that will be my life... but whoever matters will stay, no matter what... no matter the distance.

The weekend was bitter-sweet, peaceful... I was in a “leave me alone” mood, but enjoyed the quiet presence of Mommy slumbering beside me in my bed. It is the simplest moments that counts the most... I suddenly realized the real meaning of quality of life, and its warm and fuzzy all over. Daddy made sure that I would not miss my running schedules. I have also grown quite fun of the pool... Seems that we'll have pool parties in my house until the 4^th of July. It feels so peaceful! I even acknowledged that my sister should also be with us in the pool, even if that is a risky endeavor! But I have also realized that she wants to be around me so much... I know it is not her fault that I have all these amazing gadgets around me, which beg for her attention. So... We've been spending more water-play time together. It is fun. Now she has a floating device that keeps her at a safe distance. So... The brief vacation before Summer school and Summer camp will be over this week. Let's see what dreams may come...

God: This time I ask for Your help for someone whose house burned down two days ago. Help her and her family start over... We are all grateful the losses were just material. Thank you for all the little daily nothings, God, for they are the biggest gifts You have brought us. Thank you for kisses, and hugs, and smiles... I sure wish that all people around me would understand when I smile... because I do smile so much! Thank you for Mommy and Daddy and Kali... for my close family and my joint family. Thank you for godparents who are always there and who remember me at all times. Thank you for friends who I know and who I don't know but that are out there... I count my blessings, and I am humbled by so many miracles, God. Thank You. Keep me in Your hands. Amen!