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Category: Down Syndrome
As my daughter continues to thrive and do things I never expected her to do, as she continues to amaze me each and every day it makes me think about my own self and expectations for myself. If she can get through all that she has and then some, surely I can accomplish my own goals that I have set for myself. I have already accomplished a lot in my life but now I seem to come up with too many reasons of why I can’t do this or shouldn’t do that. There is always money which is a legitimate reason of why I cannot accomplish things. I would love to start my own party business, where I would make all the decorations, invites, paper products, etc, but one needs money to start such a business, so my head fills with all of these wonderful ideas of what I would create, what I would sell, how successful I would be but then the negative thoughts flood my mind (the you would have to make a lot of things to take pictures of and the things require supplies, which requires money and so on and so forth,) it is a neverending snowball effect. I want to learn photography, to play the guitar. to do all sorts of things but my thoughts get in my way, paralyzing me from moving forward. To me all of these things are wants, not needs and are therefore frivolous.
I have fears, fears that linger in my heart and my soul, fear of things going wrong, fear of the rug being pulled out from under me as it has so many times before, the fear of the unknown. I hope and pray that these fears subside in me, but after being hurt and having horrible things happen, I fear that it will always be that way, the fear has made a permanent dwelling in my being, it lingers there and feeds off my feelings of dismay. I often wonder what it feels like to be carefree, to not have a worry in the world. I guess my first step is to stop being fearful, but how to do that is the question.
We got our first look today, it was probably the second or third time that I have taken her out since she has been “allowed”. I had to go to the doctor so I took my little princess with me. There in the waiting room with a “normal” baby, probably about 2 weeks old, and screaming her head off, the mother kept glaring at me and then at Leah, giving me the phony, I pity you smile. She gave me the look, you know the look, the “Oh I am so sorry that you didn’t have a normal baby like mine look,” the “oh you poor poor thing look,” the pity look. I have been waiting for the first time this would happen, expecting it to hurt like hell, to make me burst into tears, but ya know what it didn’t do any of that. It really pissed me off actually.
I don’t need your pity, I don’t need you to feel sorry for me or my baby. She is going to do things just like any other baby just in her own time. She has been through more in her short little life, than any “normal” baby will experience in a lifetime. She is brave, she is strong, she is determined, she will do whatever she puts her mind to, so no do not pity me, do not pity my family, do not pity my baby, she will surprise this world, she will prove everyone who tells her she can’t wrong. And to people who give those looks to mothers like me, keep your pity for someone who needs it, because I do not need it, there is nothing in my life to feel sorry about, my life is better because she is a part of it, I wish for everyone to experience that kind of love just once in their lives, and then you will understand, then you will never look at me like that again.
Although she doesn’t know it yet today is a very special day for my baby girl and for so many babies, children and adults like her. It is a day to celebrate the 3rd copy of the 21st chromosome, 3-21 is World Down Syndrome Day. It is almost 8 months later since I brought that precious little blessing into the World, she is such a blessing and a joy that the whole world wants to celebrate her and others just like her.
8 months ago I never would imagine that today I would ever be celebrating a day such as this and I am embarressed to say that I never knew it existed. So I feel like it is my life’s chore to make people aware, to make them see just how special and wonderful my daughter is and how special all people are with Down Syndrome. As my baby girl gets bigger we, will do something special on this day each year but for now I will just love her, and give her extra hugs and kisses for truly making my world a better place.
I am a guest blogger for Down Syndrome Day on a blog called Bookaholics, go check it out.
http://bookaholicsbkcl.blogspot.com/2012/03/not-what-i-expected.html
Thank you to Mist @ Bookaholics!!!!
Down Syndrome Day is March 21, 2012. I can’t imagine my life without my little girl in it and I feel that my life with her is better than it was without her. I think I had a hard time when I first brought her home because it was the constant questioning from people, “Didn’t you know before you had her?” No I didn’t and if I had it didn’t matter in the least I was keeping my baby no matter what, I was giving her the chacne at life that she deserved. I think what I want people to know is that no matter what diagnosis your baby has, he or she is still a child, he or she is still a life and they deserve everything that life has to offer.
I know that people will never ever understand until they have walked a mile in my shoes, you will never know the love I have for my children, you will never know what it is like to have a special need child unless you are living it. So my advice for this Down Syndrom Day, would be please do not judge me, my baby or my family. If you don’t understand please get informed, there is plenty of information available and I would be happy to put you in the right direction. So I guess what I mean is, do not question or judge until you have all the facts and until you have experienced a day in my life.
If you could go back to right before you had your baby with Down Syndrome what would you tell yourself?” It got me thinking about the question what would I tell myself if I knew then what I know now. I would say that something is about to happen to you, to your family, something that you are not prepared for but it is going to be okay, it is going to be fine. A wonderful little girl is about to enter your life and she is going to make it a brighter more loving place to be. I would tell myself I know you are scared, I know you blame yourself and it is okay to feel these things but know deep down that God chose you to be this little girl’s mommy for a reason, he knows you are strong and loving and will be there for her no matter what. She needs you, she needs your love, she needs your help, she needs you to just love her, love her for who she is not for who she was supposed to be or may never become. I would say she is not what you expected, she is so much more. She is going to teach you things about life that you took for granted or never understood before. She is going to teach you how to appreciate life and how to love. I would tell myself that because of this little girl you are going to be a better person, more giving, more caring, more loving. You are going to be all that you can be all because of her. She is going to be s joy to your family. She is going to make your family stronger.
Don’t be scared she is going to get through the heart surgery and amaze everyone.
She is going to amaze you with how much she can do. She will do so much more than the experts tell you she will do. I would tell myself that I am stronger than I know and that she is stronger than I can ever imagine and we will all be alright. I would tell myself that you will love this baby girl more than you can possibly imagine. She will teach you to love better to hug harder and kiss longer. She is going to change your whole world as you know it and make it even better. You will appreciate how precious life is. The road ahead might be scary because there is so much more that is unknown but don’t worry about what you don’t know, just love her and she will love you back. Enjoy life in this very moment, enjoy each one as they come and cherish them.
7 months old today, and I will say it again, I cannot believe I am sitting here now, remarking on this wonderful day and how truly far we have come. Sitting in her hospital room watching a machine breathe for her seems like a distant memory yet as if it happened yesterday. If my being today could talk to me 5 months ago, I would tell myself not to worry, not to fret, not to shed any tears but happy tears, because you are going to be alright, you are all going to be just fine. There is light and happiness at the end of this gloomy tunnel waiting for you, just be brave, be strong and it will all work out in the end.
A friend told me while I was in the hospital with my little girl “You are going to look back on this months from now and wonder how the hell you got through it all.” Well friend today is one of those days, how did I get through it all, how did she get throught it all, how did our family and friends get through it all?” Strength, strength I never knew I had, bravery I never knew was inside of me. As I look at her today rolling over on her belly, so alert, so strong I can’t even beleive she is the same baby. She went from the baby who slept 22 hours a day, to the baby that refuses to take a nap, she went from a baby who hardly ate an ounce of food to eating and drinking all the time and getting excited about it. She was the baby that never cried and now boy does she let you know, when she’s happy, hungry or just wants to have a chat.
So to all those moms and dads that are going through what my family and I have gone through, be strong, there is hope, there is light at the end of the tunnel, you just have to work really hard to get to the end of it, and on the other side waits a beautiful life with a beautiful baby who really just wants to be loved and cherished.
Physical Therapists, Speech Therapists, Specialists, oh my. Never did I dream of any of this when I was pregnant with my little girl. Although all the appointments and doctors can be so overwhelming I am glad that I had her during a time when there is so much available to her and so many people willing to help her. She attracts people wherever we go, she has such a bubbly little personality that people just flock to her. I admire that about my little girl, at only six months old she has the ability to light up an entire room. I love her so much. I hope everyone has a fabulous weekend. Don’t forget Down Syndrome Day is coming soon, do something special for someone you know who has Down Syndrome or has been affected by Down Syndrome in some way.
When you are in the midst of having a baby you are submerged in it, surrounded by it, you eat breathe and sleep all things baby. You dream about the little girl inside you and you think about all of the things you are going to do with her, all the pretty clothes you will dress her in. When you awake from that dream into what you believe is your life’s biggest nightmare at the time, “Your daughter has Down Syndrome and will need open heart surgery.” This was certainly not the dream, not the hopes, not the wishes that were had and made upon shooting stars in the night sky. This was happening to someone else, certainly not me, how could it, I am young, I did everything I was supposed to do, I did everything right. How did this happen to my little girl, how did this happen to me? Then someone sent me something, a beautiful poem. I read it and at the time didn’t really think much of it, just thought it was some other way that people were trying to make me feel better, people who didn’t understand.
The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of disabled children. Did you ever wonder how mothers of disabled children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
“Armstrong, Beth; son. Patron saint…give her Gerard. He’s used to profanity.”
“Forrest, Marjorie; daughter. Patron saint, Cecelia.”
“Rutledge, Carrie; twins. Patron saint, Matthew.”
Finally He passes a name to an angel and smiles, “Give her a disabled child.”
The angel is curious. “Why this one God? She’s so happy.”
“Exactly,” smiles God, “Could I give a disabled child to a mother who does not know laughter? That would be cruel.”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”
“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has her own world. She has to make her live in her world and that’s not going to be easy.”
“But, Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness.” The angel gasps – “selfishness? is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word'”. She will never consider a “step” ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle, and will know it!”
“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice….and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side”.
“And what about her Patron saint?” asks the angel, his pen poised in mid-air.
God smiles, “A mirror will suffice.”
I read this again today and I cried harder than I have cried in months, I understand it now, I understand my purpose in this world, to be the best mom that I can be to both of my wonderful kids.
It is hard to believe where we have been and what we have accomplished in the past few months. My little cookie will be 7 months old next week. In her 7 short months of life she has overcome more hardships and obstacles than most people do in a lifetime and she has done it all with no complaints and a gummy grin on her little face. This morning I realized during her weekly physical therapy sessions just how far she has truly come and I could have just burst in to happy tears. She is doing all of the things I questioned that first night in the hospital after giving birth to her, would she do the things baby’s did? The answer is a triumphant YES. She is doing things that other baby’s do and then some, only she is doing them at her own pace, the pace she sees fit for the moment, maybe she will stay at this slow and steady pace, maybe she will speed things up, we may never know, for it is all up to her. As for now I am at peace and so proud of my baby girl and the progress she is making, can’t wait to see what she will do next.
