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Down Syndrome Pamphlet Finished!

Posted Aug 26 2008 4:19pm

I first want tell you, Congratulations on the impending or new arrival of your beautiful baby! You may be feeling more scared and confused right now, than you ever have in your life, and that is something I completely understand. You may even feel like congratulations don't really feel right because of the news you have just received. But trust me, you deserve only congratulations! Hopefully this letter I am writing to you, will help you see this more clearly.



I decided to write this letter to you, because even though I don’t know you, in many ways I do know you. You see, all the feelings you may be feeling right now, are the same exact feelings I, and hundreds of thousands, if not millions, of other parents around the world have felt also. The baby you are about to have, or already have, is going to fill your life with more joy and happiness than you would have ever dreamed imaginable. Even though it may not seem possible at this very moment, trust me, you will see.



I first want to tell you how perfect your baby actually is. What ever the Doctors may be telling you about possible “problems” or “Issues” or “Life Long Struggles”, I want to tell you something else. The First thing is, Your Baby is PERFECTION in every sense of the word. Your Baby doesn ’t have a disease, Your baby isn ’t a Mistake, Your baby isn ’t a Freak of Nature.

Your Baby is Intelligent, in so many more ways than an IQ test could ever measure. Your Baby isn ’t going to Ruin your life or your families. Your baby is going to be loved by everyone who meets him. Your baby is going to be welcomed with open, loving arms in this world. Your baby will accomplish everything you wish for him, just like every other baby. Your baby is “Normal”, your baby is Beautiful, Your baby will do Everything any other baby can do, maybe it will take a little longer, maybe it won't. Your baby will love you, challenge you, anger you, laugh with you, test you, play with you, and do practically everything you can imagine for him.



Your baby will not slow you down or burden your family. Your baby will make you wonder every day, what you were so afraid of? Your baby will make you want to run right back into your Doctor’s Office and ask them why they told you such negative, depressing statistics. Your baby will make you want to educate the world about him. Your baby will turn you into a person you never knew existed. Your baby will remind you every day of the all of the love in the world because of all of the love he will attract. Your baby will surprise you at how intelligent, independent, stubborn, funny, and capable he really is. Your baby will re-teach you everything you thought you had figured out about life. Your baby will make you want to be a better person. Your baby will make you question why you ever doubted that you wanted him. Your baby will hug you, kiss you, love you and win over every single member of your family and extended family within minutes. Your baby will give you a purpose that none of your other children did. Your baby will want to make you do what I am doing right now, scream out to the world that he is perfectly fine, he is ok , he will live a long healthy life, he will do everything you wish for him, he hasn't ruined your life or anyone else's !



It's important to remember, at this emotional time, that every single baby born is going to have the life God has planned for them. That means that, all of our pre -conceived notions about what we think a "perfect" child is or should be, really doesn't matter. After all , none of us want to have the sick child, the fat child, the skinny child, the child with the big nose, big ears, lazy eye, bad hearing, bad eyesight, un -coordinated, slow, depressed, hyper, the child that all the kids will make fun of. However, like it or not, these children make up our diverse population and will continue to until the end of time. For it is up to us, as parents to teach acceptance to all of our children, so that they go into the world and don't see other's as strange or different. It is our responsibility to teach our children that we are beautiful in our differences, unique in our differences, and that all of has enormous capabilities. When we don't teach our children that, they are the ones that make fun of the kids they see as "different". We teach our children this, by terminating life that is deemed less than perfect.



Every child born will have the life that their parents allow them and demonstrate to them. And if at this very moment, you are thinking that, "I can't handle a kid with "special needs", or a child with "illnesses", or a child with "Problems", I need to remind you to look around this world and realize that every child has a purpose, just like yours. Talk to teachers who work with children every day, they will be the first to tell you that ALL CHILDREN have SPECIAL NEEDS!!!! Speak to some parents who have had trying times with their "typical" children . The typical child who rebels and goes on to do drugs, or drink or steal. Maybe it's their "typical" child who goes on to develop an illness that requires hospital stays. Maybe it's their "typical" child who needs a little therapy to learn how to speak more clearly. Then ask any of them, if the challenges they face with their "typical" children if this is the future they had seen for their child? Ask the parents of "typical" children if they regret having their child, or if they love them any less. Ask these parents, if they would have chosen abortion because if they could have seen into the future and all of the difficulties that lie ahead. Would they ever have thought they had the strength to handle all of these problems and struggles and "burden" that their children have turned out to be at times? Probably most parents would say "Of course not. I would never have terminated even knowing what I know now." They also would probably say that they never thought they would be able to handle these difficulties , but they found that not only can they, it's made them stronger, smarter, more accepting and a better person in the end!



Every single one of us is born with a purpose, a soul, a heart, a mind and a life. Every single one of has strengths and weaknesses. Some of our weaknesses are for all to see, and some of us we can cleverly hide. Some of our strengths are for all to see, and some we can cleverly hide. Every single one of us is perfect in our Imperfections. Every single one of us will have things that slow us down, and things that speed us up. Our development all has to do with our parents and environment. For we all know people who had “difficult, challenging” childhood's, and those who had “supportive, easier” childhood's. We all know people who get sick, get injured or have lives that ended short. We all know people who unfortunately develop disease or who have illnesses that slow them down, or cause them struggle. We all know people with physical challenges, mental challenges, emotional challenges and life challenges. We all know people who are on medication. We all know people who don’t live healthy lives. We all know people who are self-destructive. We all know people with addictions. Nobody’s future is determined EVER by a Doctor or Parent or Psychic. Our futures are determined by something greater than ourselves and by our environment and will. Even though The medical world gets a little righteous and judgmental and they have their ideas of perfection, and they like to tell people what they can and can not handle. I will gently remind you that we are all guilty of this. Even though the Medical world serves an invaluable purpose in this world, they do not have all of the answers, the right answers, and very often they have no answers. For the medical world can not answer many things, like love, determination, will and fate.



We all have images in our head of incapacitated babies or children, or babies that are deformed, or babies that are sick, or babies that struggle or babies that have difficult beginnings or lives. We all see images and stories of poverty, killing, raping, abuse, neglect, disease of our children. We all wonder why is GOD so cruel as to allow children all over the world and right here in the U.S., to suffer the way they do. After all , all you need to do is visit an Orphanage in Russia, 20 years after Chernobyl to see babies left for dead in Institutions because a simple heart procedure performed in the US which could easily assure them a long, healthy life, is unavailable to them there. All you need to do is see what is going on in Africa, where millions of children die each year from starvation and disease. What about Afghanistan, where a simple cold, left untreated, can easily kill a child. Where only a small percentage of babies are born healthy and alive. It goes on and on. I only pose these thoughts because, I want you to try and put into perspective, at this seemingly emotional and difficult time, One thing: The baby you have, is your baby, your intention, your will, your want and your life. You created a perfect human being. Perfection is all Perception. What is perfect to me, is most certainly not Perfect to you, and vice a versa . However, you love your baby more than you know, and your fears and doubts will wash away quickly as you hold, love, interact, nurse, play and kiss your precious gift. You are not a saint, you are not a charity worker, you are not perfect, you are not a martyr, however you are a parent who created a child, who will love you forever, and whom you will thank God everyday for, for the rest of your life.



I know. My son, now 2-1/2, born December 16, 2004, is everything my 8 Year old daughter is to me. The only difference is, he’s a boy. All boy! He has a huge fan club filled with friends and relatives. He was embraced and accepted by every single one of our friends and family members. He was loved in the Hospital when he was born, and it never stopped, it just grew exponentially . He is wild, mischievous, into everything, loud, rambunctious, funny, talkative, and playful. He has the best sense of humor you’ ve ever seen on a child this young, he is so smart, he doesn ’t miss a thing, he has to be part of everything. He runs, rides his bike, plays his drums (big mistake Grandma & Grandpa), fights and plays with his sister, does things he knows he shouldn't , doesn ’t always listen, loves to watch his videos, tries to work on the computer with me, plays the piano, tries to steal his sisters game boy, talks on the phone, and loves to do tricks on demand to make us laugh. Did I mention how much he talks? Jaden was never a burden. Jaden has never slowed us down. We both have our own businesses, and Jaden has never kept us from working. I'm still waiting for a "special needs" child to show up, because all I have is a beautiful, healthy, active, wild boy!



Jaden starts preschool in a few weeks, a regular preschool, and he is very excited. All of the schools we looked at, over 10, not only welcomed Jaden with open, loving arms, they could have cared less that he has Down Syndrome, in fact, sometimes people have no clue! They all said to us the same thing when we were interviewing them, “All kids have Special Needs, Trust US!” They all said, Jaden would fit in beautifully and would be just fine. I know that, but I’m still a mom!



Jaden is happy, healthy, outgoing, intelligent, and a joy. Does he sound like a mistake to you? Does it sound like he has a disease? Does he sound like he is suffering or making us suffer? Does he sound unusual for having Down Syndrome? Maybe because of the Stereotypical, outdated, inaccurate information that the Medical Profession still passes around, but trust me, he isn ’t unusual. There are plenty of kids, just like Jaden who read when they’re 3, who walk when they’re 18 months, who talk, who are over achievers, just like all of the other “annoying” overachiever kids in this world. Does it mean your child will be exactly like Jaden - No, but you will be just as proud if not more!



Every single parent who has a baby with Down Syndrome, wishes the same thing, which is: That they had a parent to talk to when they heard the news of the diagnosis. A baby to see, to see that everything was going to be ok . That it isn ’t like 50 years ago. That the world loves, accepts and embraces kids with Down Syndrome. That the School Systems includes our kids. That people in general, can’t get enough of them. That they very often become the star of the class and school. That their lives are as endlessly possible as our own. That they’re not going to be hindered and held back. That they will be able drive, read, write, go to school, have friends, girlfriends. That they can get married, move out, live independently. We all wish we could have heard this, so that we would have known the Reality of Having this baby. So it would have washed away the selfish fears of Not having this baby.



We all wish we would have known right away about all of the exciting research that is going on with Down Syndrome. Did you know, that at Stanford University, they have a whole building devoted solely to the Research and Treatment of Down Syndrome. They truly believe that in the next few years, they will have treatments which will allow many delays that a child may have, to be a thing of the past! There are treatments right now that are showing amazing promise. There are many links between the research they are doing on Alzheimers and Down Syndrme right now which are showing researchers that Down Syndrome is a treatable condition and they are extremely excited about this! Did you know that there are so many Early Intervention Services from Health to Speech, Physical etc, that help in every way you can imagine? Did you know that there are numerous support organizations that are here to give you any and all information you may need? Did you know that there are Nutritional Supplementation Programs that can greatly help your child's health?



I am not an extremist or part of a religious group. I am not part of a Pro-Life or Pro-Choice movement. However, I am a mom, who knows lots of moms, who will tell you that your love will be there for your baby and your love will outweigh everything else. When you look into your babies eyes you will instantly know what I am saying is true. This is the one thing the medical community continually undermines and forgets. That a Mothers/Fathers love for their child is so innate and powerful, that it takes over anything else that may get in the way. Don't doubt for a second your own ability to love and care for your baby, trust me, your love will be there stronger than you ever knew.



The world only changes one person at a time. Not one day goes by, when we leave the house with Jaden that someone doesn ’t tell us how gorgeous he is, or how beautiful his big brown eyes are, or how long his eye lashes are, or how beautiful his smile is. Not one day! You will see. The same thing will happen to you. You will be more proud of your baby than any other baby you have or will have. Why? Because he has so many inaccurate, outdated, regurgitated stereotypes stacked up against him, and for this reason alone, your pride will lead your life.



No child’s fate is ever predetermined by us, or Doctors. Remember that they can not pre - natally test for Autism (1 in 150) kids, or Cerebral Palsy, or cancer, or allergies, or migraines, or depression, or bipolar disorders, or addictions, or add, or learning delays, and thousands of other possible "mistakes". My point being that, when ever we decide to have a child, we are all thrown into the same lottery. And by virtue of having our child, we all automatically win.



I don’t know you personally, but I care and I am here for you, along with hundreds of thousands of other parents. The feelings you have are completely Universal, in a way that binds us together in a Community so powerful and strong that it will make you feel loved and safe. A Community you may not want to be a part of right now, but one you will soon feel proud of to know. I hope you will read this letter and wonder, why you were so scared. Trust me, if you are at this moment, you won’t be for long! I wish I could be there to tell you these things in person, or to hold your hand or hug you. I wish I could be there to let you talk to my son, or to hold him. For if I could do that, you would see that everything I am saying is from my heart and true. I wish you only the best, a life filled with love and joy and hope and pride! }

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