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Post by faithhope on Feb 19, 2008 15:21:51 GMT -5
Well today it was confirmed to us. I knew it all along, it was not a surprise, in fact the second I first saw Noah when they laid him on me, I just knew it. Something was just a little different about him. In those moments I was being prepared, but the truth is at least for me, there is no way to really prepare for when you finally hear it confirmed. DNA can never be changed, it is what it is. Now truly begins my journey of life with a child with ds. That hurts my heart so much, but I know as you hvae all assured me that there will come a day when I will not feel regret or sorrow for having him. I mean I know there will be tough times, but I will be better because of him. Part of me wishes there was a way to see into the future to see what he will look like, to know how smart he will be, to know what abilities he will have. Mostly to know that he will not be severely retarded or have major health problems, to know that he will have many friends of all kinds, and to know that he will be loved by all. I want to know that I will still have my life, do my own things they way I had dreamed with my baby, not have them altered because he has ds. TO know that I will not feel ashamed when I go to just the grocery store with him, to know that I will not have people stare at him or make fun of him or pity me or judge me. I want to stop feeling like something went wrong in my body, that I am somehow less because I could not produce a "perfect baby". I wish I didn't hjave to be this person who doesn't feel like going anywehre with him, for fear that people will come up saying " aww cute baby, and then I will see them wondering in their minds if this baby has ds or something becuase he looks a little different." I just want to move forward as if life had never changed, at least not to the extent that it has. Where I am just the mother of a 2 month old, and I dont have to worry about insurance, and if it will go up now becuase of Noah and the fact that he will probably have special needs and illnesses. I don't want to envy those moms I see and know, who complain about a fussy baby, but who have no idea what it is like to really have something like this to worry about. I can't watch those shows I used to love when I was pregnant about birth stories and motherhood, becuase I just can't relate and it hurts me that I didn't ever get that moment or that experience of just pure joy and pride. No instead God gave me something different than I had ever expected and I am ashamed to think how I used to think I would have an unconditional love for my baby. Instead I realize how conditional that love was. I used to imagine and say, " all I care is that the baby is healthy, but truthfully when I pictured my baby, I pictured a baby who would be beautiful, perfect looking ( to be envied), I wanted a baby who would be super smart ( at least typical smart), one who would be strong andhealthy, I had all these physical conditions for me baby. God sure has a way of teaching us, how wrong I was. OK so I needed to say all that. I know that you will all understand, at least I hope. You are the first ones I wanted to tell, I imagine I am leaning my head on your shoulders and you are surrounding me with your love and support. OK bye for now, love, Jessika
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Post by twosomy21 on Feb 19, 2008 15:50:59 GMT -5
thank you for sharing your story and cry if you need to i think a lot of us still do -you will get to the point of wanting people to look because he IS different in a wonderfull ,innocent way. the journey is going to change your life you will be your sons biggest fan and advocator you'll cry when he can not quit accomplish a task and again when he does because only you will understand ( and these sp. moms)the strength it took for your liitle guy to achieve his goals i wish you the best in this new life and know your concerns are normal-your off to a good start. and we do not know the future but love hiim and he will develope into his own little character the way it is meant for him. i think the pain does not ever go away but again i belive that pain humbled us into loving these children. keep us informed
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Post by wrblack on Feb 19, 2008 16:46:28 GMT -5
So, welcome to the club. Rather exclusive club. Membership open to about 1/10 of one per cent of the population. Initiation is a bit rough. But you couldn't hang out with a better class of people for all the money it takes to join snootiest country club. So, does Noah have regular trisomy 21 flavor of Down syndrome, or is he one of the exotics, translocation or mosaicism? And what does Noah's dad say, think? Wouldn't he like to join Uno Mas? We could use his web skills. Oh, wide range of abilities, traits, characteristics among people with Ds. Can't predict how a two-month old is going to fare. All that stuff about kids with Ds all being alike is a bunch of crap. They're all different, as are we all. They've got an extra copy of the smallest chromosome. That's all. It is significant. But there's nothing wrong, broken, defective in any of their chromosomes, just got stuck with an extra one. And they've still got the other 46 just like everybody else. And they got all of them from mom and dad, who got theirs from their moms and dads. Why don't you bookmark your post and come back in a year and tell us what you think then? Take care. -- Bob
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Post by tiffany on Feb 19, 2008 16:53:53 GMT -5
I know everyone has said it all already. I just wanted to add a ditto to everything!!! My sweety will be 8 on Saturday. I cant beleive it! She is the absolute best thing that has happened to our family. I wont tell you that it is all fun and games, but life with Down syndrome in it is a good one! I promise you will feel the same soon! Just love him! He is truely a beautiful baby! You will eventually see him as just your son, not the Downs. I always forget that Leah has Downs! She is just a very important part of our family. Hugs!!! We are always here for you. And I am sure you will add a lot to this group! You will someday be an inspiration to another mom who will be in your situation in the future! You are not alone on this grand journey! Tiffany
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Post by jessjetland on Feb 19, 2008 17:16:10 GMT -5
Please know that you are not alone in the this, the way you are feeling is completely normal and I know myself that I have had many of the same thoughts that you have now. Some days are hard but honestly the hugs I get from my Sam make all the rough times go away. I walk in the door every day and he is waiting with his arms wide open and I honestly can say I wouldnt change him for the world. Hang in there, Jessica
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Post by momofrussell on Feb 19, 2008 17:19:29 GMT -5
WELL SAID BOB! ;D I love it!
Jessika, first off, at least you now know right? I know that sounds simplistic and I am not trying to make it simplistic but, you have that confirmed and you can work on healing.
I know it's hard right now but what I do know is that in time you will find out that those things you are feelings are going to change. I know you are having a hard time with the "baby as you knew him" but I think one day you WILL realize he IS still your baby.. and he CAN still have all that you want for him!
I know this is easy for me to say but as you go along loving on your son, try not to worry about what others may think, do, say, pity, etc. Again, you will get there... I know your emotions are raw.
I am glad you shared with us and you are continuing on sharing with us. I think this is a WONDERFUL place! This is the first place I found when Russell was 2 yrs old and although I go to other sites, this is and will always be my first love... it's so cozy here and we are here for each other and here for you.
Many hugs to you!
Adrienne
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Post by Renee' on Feb 19, 2008 17:33:27 GMT -5
The thing is when you have a baby you are never really sure how they will turn out. An example, my uncle was born perfect but as the years went on he started having issues. As an adult he is still living with my grandparents because he has a mental illness.
I won't lie, it has been challenging because when people stare the 1st thing I want to do is grab them by the neck and say have you never seen a child with Down Syndrome. I later realized that I too stare because I always love to see where each individual is in their journey. Now I approach many of them and strike up conversation.
You are still feeling the burn all of us have experienced. Just love Noah. Celebrate the fact that you have a baby. Treat him just like you would any other baby. We did just that. We hold Lauren to high standards. She has exceeded a lot of them. She plays piano. She is starting dance. She plays baseball. She loves, hugs and kisses just like my other two daughters.
I can still remember the pain I felt when I was told she would have Down Syndrome. It was mostly because of I feared the unknown. Know this...Noah has come into this world at a good time. Jackie had her daughter over 20 years ago. It is because of amazing parents like her that our children are being included and loved. You will find there are some out there who will never accept our children. They are small in number. Again, one day at a time.
Congrats on the birth of your precious baby boy
Renee'
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Post by Jackie on Feb 19, 2008 17:54:36 GMT -5
Jessika...I understand the smack in the face ...that the final diagnosis gives you. We were sure Em had DS but it took a month for the results to come back saying ...FOR SURE. I never had a doubt it would be any other way...but somehow I think my husband hoped it wasn't so ...and he is a physician!!!! So I was stunned when he was upset with the results...but he quickly moved on.
I wish you lived closer to Texas ...because when you are ready I have so many positive stories about our DS path to share. The only thing I regret now is...that I gave Emily the "wings" to make her own choices and like most 23 yr olds...three years ago she chose to move out and go live with her sister 500 miles away. I am just soooo lonesome...but she is sooooo happy that I can't really complain.
You express yourself beautifully...and the fact that you can be so open and honest makes me think that it won't be long before you heal and begin to enjoy this mighty adventure along with the rest of us....So hang in there.
Jackie
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Post by Ericsmomma on Feb 19, 2008 18:57:14 GMT -5
I remember how hard it was to finally hear the diagnosis...its like a huge wave crashes over you and you're knocked off your feet! It takes your breath away! But thankfully, not for long. You still have a new baby...that is totally dependant on you for all his needs. It doesn't matter that he has a extra chromosone..he still wants fed, changed, and loved. And you'll be so caught up in this, that slowly the "down syndrome" isn't quite as scary. You can handle it. And it won't be the center of your universe...being a family will be the most important thing. I didn't see you mention whether Noah has any health problems? No cardiac, gastro, bowel stuff going on? If not, you are very fortunate. I saw his pics...he is a beautiful little man...and I love the name. I hope you will get all the support you will need...and don't forget to take care of yourself too. (new mom's tend to forget this).
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Post by Myria on Feb 19, 2008 19:18:07 GMT -5
jessika, I can't really add anything that hasn't already been said (Thanks Bob!, once again you have put it so well ) Just know that you have so much support here, I know that it is so hard to hear that definative diagnosis! (( Hug )) Oh, I did want to add that I understand what you mean about not wanting people to stare, I had the same fear myself. And it's true, people do stare at Ayden.Everywhere we go.. Especially the little old ladies... All I ever hear is "oh sooo cute!!" and "Kawaii, ne!!" ("isn't he cute!"in Japanese) People comment about what beautiful eyes he has, and how much he looks like his daddy. Please don't think that people are staring at Noah beacuse he has down syndrome, people just like to look at babies. especially brand new adorable ones like yours.. I think that you posting here is going to be a tremendous help dealing with Noah's diagnosis, I am so glad you found us! I also was wondering how Shawn is taking the news?
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Post by dannysmom on Feb 19, 2008 19:57:32 GMT -5
I admire your honesty. You're going to be OK....it is really going to be ok. My son will be 3 in June and I can barely remember those early days. All I can tell you is...as you get to know your son, all of the worry somehow goes away. Our kids have a way of showing us that it's OK. I remember wondering as well....."how delayed will he be"...."will he ever walk, talk". How will I know his cognitive abilities? The early months are tough, because everything is still in front of you....but little by little, smile by smile.....your son will show you that he is going to be just fine. I wish I could fast forward time for you......to show you that on the other side of this worry is so much joy and happiness. All I can do is post a picture for you of my little man.....to show you that YES, our kids may have delays........but my son is far more typical than he is not. He has a shirt that says "Warning I am 2". I did not get a free pass through the terrible 2's because he has Ds. He walks, talks, goes to school, he's learning his colors, he's beginning to count, he pulls his sisters hair like all other 2 year olds. He's accomplished quite alot in his 32 months on earth.....all with an extra 21. It doesn't change 'that' much.....he's still the most amazing little boy.....and so is your Noah. I know when my son was first born....I wondered so much about the future. I hope my post helps give you a glimpse into the future.....if even just 2 short years down the road. I'll tell you, when we go to the mall.....people do stop ALOT. But I know it's not because he looks different, it's because he's a cute little boy waving and saying HI to everyone that passes by. He's a charmer, and people respond very well to him....because of who he is, not just because his karotype shows a tiny little extra 21. This is Daniel on his slide in our backyard (I guarantee you he could care less he has an extra 21)....he's just enjoying the day... Here's another one of my super Dan.
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Post by Emilysmom on Feb 19, 2008 20:27:48 GMT -5
Jessika, I know the news was not what you hoped for, and I'm sorry that your heart is aching. I'm sure it has to be encouraging for you to hear from us.......regular moms and dads who have also received the Ds diagnosis.....and to know that we are living happy and proud lives with our children! But, even if there were hundreds of parents here, reassuring you that it's going to be ok......it's going to take one day at a time for you to see it for yourself. We WILL be here for you all the way!!! Please feel free to private message us, post your feelings, and post your baby's "firsts" so we can rejoice with you!!
Take your time. Let us know how we can help. Hugs to you, Susan
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Post by laurasmom on Feb 19, 2008 21:11:03 GMT -5
Jessika After reading all of the other responses to your post today, and the other day, I feel very inadequate. There is nothing else for me to add, however there is strength in numbers, so I am adding my "ditto" here. Sixteen years ago a doctor asked me if I had any knowledge of Down Syndrome, and so our journey began. Sixteen years (excuse me, 16 1/2 years, Laura is particular) later, I can look back at all sorts of memories, some not so good, but overwhelmingly wonderful memories of what has been so far a happy and fun life. As everyone has said, don't be afraid to share or ask anything, chances are you aren't the first to have asked, or said. We are here for you, Noah and your whole family!!!! Sharon (I included a couple of pics from Laura's 16th. One thing that did help me was seeing lots of pics of kids with DS enjoying life)
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Post by Googsmom aka Jennifer on Feb 19, 2008 21:13:08 GMT -5
Jessika hunny I just wish I could give you a big hug I also wish you could spend a day w/ Brook. She is so fun! Everywhere we go everyone wants to say Hi to her. Everyone want's to take her home. Isn't gunna happen but they can wish Today, here's a funny one, i'm at the airport picking up mom in law and some man came out of no where and stops us and asks if her can adore my baby. I say I don't care, everyone else does. My sis in law thought he said can I borrow your baby, so she starts going off about h*ll NO you cant. I corrected her and we all had a good laugh. Things like this happen all the time. It's been said out here before, our kids love w/ there whole heart and they really do!! I know some people have different feelings about hearing the words DS for the first time. I just want to hug them and somehow let them know it WILL be ok. Cuz it will. Brook has a good life. Noah will have a good life too. Kids are kids and they are all different no matter how many chromozomes they have ( see i think about it so little i can't even spell it ) Hugs to you Jessika. We are all here for ya Here's a pretty pic of The Brookster aka Googs
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Post by lorraine on Feb 20, 2008 5:16:00 GMT -5
Jessika, I haven't got anything to add to what everyone else has said But I wanted to send.............. Take care and give Noah a big from me. Lorraine
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