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Hi, my name is Vincent! My brothers still call me "Vinnie-Mac". I am 16 years old now, WOW! I really did just say that, I am now Sixteen! Each and every day is special! Yes, I was born with that special condition known as "Lissencephaly" (Miller-Deiker Syndrome). That's a big word! I guess it's enough to scare most people to hear that a child, such as I, is born with a rare condition that most hadn't ever heard of. Am I special? You bet! Here is a little bit of my life brought to you from the perspective of my Parents! After fifteen years, I believe they know me pretty well and so therefore I think it is OK for them to tell my story.(Meet my Family)
I don't want to dwell on the bad stuff that accompanies this rare condition, but rather, I'd like to tell you about all the great things in my life. First and foremost, I have an incredible family. I have parents that love me and brothers that aren't afraid to spend time with me. Oh sure, at first we were all scared, but in time, we have all learned to handle my special gift. I'm not saying it's easy, but I do get what I want!
Let me tell you about my brothers. First, there is my older brother Evan. He continues to be an incredible blessing to both myself and my parents. He is the perfect big brother. He helps me through very difficult seizures, he also helps with my feedings and also helps with my meds and with my Trach care. Many times when my parents are asked to go out with their friends, Evan cares for me so that they can enjoy a night out on their own, that is so cool! He is strong willed and brave, I love that about him. I just can't believe that he's already starting his third year of College...WOW! He's all grow up and become such a fine and responsible young man! He takes such good care of me. Both he and my other brother Jeremy have grown so much! Now let me tell you about my brother Jeremy. He is very energetic and sometimes his desire to do everything gets the best of him. He is now starting his first year at Fresno State and boy is he busy! He's so cool! Like Evan, he has helped me through tough seizures and with my feeding and meds, although now that he has officially moved away, it won't be as often. When Evan and Jeremy were younger they both practiced playing the piano, and they both used to play for me, that was very cool. Jeremy has been playing the electric guitar now for a couple of years and he has gotten much better. He likes rock and roll (probably a little harder than that) and he plays for me all the time. He has even played with a few bands which he formed himself and to my surprise, he sings too. I guess I like that music too ;-) Jeremy will be busier than usual...but I'm sure he'll miss me while he is away. We continue to be very proud of him as well. I am very lucky to have two incredible brothers to share my life with. (Meet Evan and Jeremy) Have I mentioned my mom yet? Well, what an awesome person. Her name is Dora. She tells people that I am her gift from God. Well, from my perspective, she is my personal gift from God! She is my heavenly angel! She has sacrificed so much so we could continue to be a normal family. I love my mom! She might not be the biggest person in stature, but few can even come close to the size of her enormous heart. My mom never makes any excuses, she does everything she possibly can for us. She is a very dedicated person. We all love her very much! Oh, and she's a very beautiful mom at that! Whatever you do, don't make her mad! She's a very powerful mom, in fact, she's my very own super hero, Wonder Woman! Today both of my brothers are taller than her, but she can put them in thier places in a snap! You don't want to hear that "snap", that's when she means business, she rocks! (Meet my Mom) And last but certainly not the least there's my Dad, "Alex" and back when I could talk, I used to call him "Ayex". Since my trach operation, only air comes out of my mouth, but I still try to call him Ayex. Back to my Dad, he is a man who has learned that God has personally chosen him to raise all of us. Dad loves us all and works hard to provide for us. He is an amazing man who places his family first above all else. In fact, sometimes we have a hard time getting rid of him. My daddy and his wacky sense of humor, which always makes us laugh, is our individual medicine that gets us through some hard-hitting times. Thank you so much God for blessing us with such an irreplaceable and devoted man and for bestowing in him the gift to make us laugh. (Meet my Dad)
As a family, we have done many, many things! We have been to so many places and have done so many things that you'd think there was nothing different about us. It isn't that we don't understand how different things are for us, it's just that my folks couldn't see why they had to change how they live their lives. Over the years we have been to Disneyland, Lego Land, Knotts Berry Farm, Sea World, The Monterey Aquarium, The Long Beach Aquarium, Las Vegas, the Mountains where we all played in the snow, countless number of movies, the Big Fresno Fair, and too many restaurants and Malls to list! For several summers it has become a family tradition to visit one of my dad's high school buddies in Long Beach and spend an entire day at their annual "Beach Party". These events are always a whole lot of fun! Unfortunately I was unable to attend this year due to some issues with my health. Please visit my Vacation photos to see some of the fun described.....
This is the mushy stuff...
How did we get here? Can it really be that easy? Are we fooling ourselves? Is this fair? There are so many questions that we pondered over the first year of learning of Vincent's condition. You know, it isn't that this is easy, it's just that we had to come to the conclusion that there are things that happen in life for a reason. There are things that cannot be changed. Things that are meant to bless a family and not burden them. The sooner we came to understand that I was a blessing, the sooner we all started living again!
Pity is a very powerful emotion. It can drag you down and make you feel invisible. You go through life believing in God and you have even had God answer your prayers along the way. It just didn't make sense at the time to have a child with such a disadvantage be placed in your life. Not when you thought you had earned the right to a flawless life.
It isn't impossible to think of this experience as a curse. I mean, why did this have to happen. You begin to believe that maybe God isn't listening. You ask him for a miracle, one of biblical proportion. A miracle that will erase all the hurt and confusion that has been placed in your life. A miracle that will completely heal your child. You are then challenged with having doubt. Why hasn't the health of my child changed? Why aren't you listening? Why are you doing this to me? Curses, why?
Stop! Look and listen. Walk over to your child and look! There, right there. There is your miracle! An innocent child who only wanted to be placed with a family that would love him or her no matter what. There lies the answer to all your prayers. A child that will love you unconditionally. A child that will open your eyes and teach you all that is sacred. Life is the miracle. This child is your reward. Open your heart and let this child fill it with the best kind of love you will ever know. No, this isn't a curse, you have been personally selected by God for this most incredible blessing. Everything will be OK. Trust in your faith and be prepared for the ride of your life! It is all up to you if you choose to accept this powerful responsibility as-is. You are now traveling on the most exciting and educational roller coaster life has ever presented. Hang on tight and grow.....
I have heard this a few times and it is good advice: "Sometimes these special children are put in our lives not because of what we can do for them, but rather, what they can do for us...." Those are strong words, they imply that we have the inner strength to handle circumstances we thought we were not prepared for and the will to be there for our families no matter what the challenges. We can be more than we ever imagined thanks to these children!
These are some of the feelings and questions we had to overcome in the beginning. If you ever find yourself in a place where you have never been before, trust in your heart and take the time to make sense of the situation. It's a difficult road to travel in the beginning, but if you hang in there, you will understand why you have been placed there. It is entirely up to you!
We have been blessed and we'd like everyone to know this!