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.
We played the Mega Millions tonight, maybe we will hit the jackpot, wouldn’t that be nice. Over 300 million dollars, I don’t even know what I would do with it all, I probably would give 25% or more of it to St. Jude and Maria Ferreri Hospital, pay off our medical debt. I would donate a large chunk to the Down Syndrome Association. I would pay off my parents’ house for them, help other family, I would help those who have been there for us and helped us, I would buy a house, travel a lot and my kids would be set for life. I would love to go to a homeless shelter and just hand out thousands of dollars, I would love to help everyone. I would take all kinds of lessons, music, art, photography, anything and everything. I would be home with my kids and stop feeling so guilty that I am not earning a paycheck. On a more selfish level I would hire my own personal trainer and chef to help me lose this weight once and for all. It would be nice to know that we will be able to spend lots of time together as a family and not have to worry. Dream a little dream.
What would you do with $300,000,000?
So it is Spring and we are allowed to leave the house, FINALLY. It has been a very long almost 8 months of being stuck in the house. So now that she is free to go out, I am afraid to expose her to the world, afraid of the stares from strangers who are ignorant, afraid of the germs out there, afraid of the unknown. I know that I can’t protect her from everything but I am her mother aren’t at least supposed to try.
So I will take her out and face my fears head on, there will always be germs and there will always be ignorant people, so I guess we will take the good with the bad and live our lives to the fullest.
Happy Spring Everyone!!!!!
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.
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.
It all started in an internet chat room on AOL 14 years ago. Then we started chatting on the phone every night for hours. Then we decided that we should meet face to face. I was attending college in NYC so I planned for us to meet at the Disney Store on 5th Avenue, it was as public as you could get, you can never be too careful in these situations. I stood there waiting for him and slipped inside the store wanting to chicken out, I thought to myself, “this guy is never going to like me, I should just leave now.” But I changed my mind and thank goodness I did. We met when I was 21 and have been together ever since. We were engaged in December of 2000.We were married in March 2002 and went to Disney World on our Honeymoon. We made it to our 10 year anniversary, we have had our many ups and downs, we have overcome some of the hardest obstacles in our 10 years together but we have managed to pull through together. I am so glad that he found me that day on the internet and that we decided to meet. We have created wonderful memories together and have had a beautiful family. I don’t know where the road of life is going to take us in the years ahead but I do know that no matter what life throws at us we are going to get through it all, together. I know that no matter what, I have a partner and a best friend who will always be by my side as we continue this crazy life together. He is the best father I could have ever chosen for my children and a wonderful husband. I appreciate everything that he does for me and our kids. Happy 10th Anniversary to my best friend for 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.
So my little guy is trying his hardest to find an extra-curricular activity that he will enjoy. Yesterday we tested out karate, in the car he said to me, mom I am not sure that karate is for me, I didn’t really have too much fun. So onto the next thing, in search of swimming lessons that do not break the bang because as he put it, “I think swimming is my thing mom.” Okay if you say so, he was so cute in karate and he did really well for his first try, do I make him do it anyway or just keep trying to find something that fits him. Hmmm. Little Miss is doing really well at her PT, getting stronger everyday.
So we have been lacking in the sleep department lately. Little Miss has decided that sleep is not an option at 2 am- 6am and really does not feel the need to nap during the day, I think that she believes that she is truly going to miss something super important or monumental. So I have tried the cry it out method, I have tried lying in the room with her, either way she will not nap, I take that back she napped the one day I just let her cry it out but I feel terrible letting her cry but I know that at 7 months old she already knows this. Why do you ask? Well when I walk into the room as she is “crying” and I use quotes because there are no tears and suddenly she has a big ol goofy grin on her face, so I do see an academy award in her near future, because she totally has her mommy wrapped around her little finger and she knows it. So what have you done to get your babies to nap or sleep through the night, this tired mama can use some advice.