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Post by faithhope on Feb 14, 2008 13:20:20 GMT -5
HI Everyone, my name is Jessika. I currently live in Palmdale, CA. Will be moving to Tampa/St. Pete, FL. area in about a month. I gave birth to our first child, a boy named Noah. We were told he may have DS. We are still waiting the results of the chromosome test. I believe that he does have it. My husband doesn't think he does. That is how my husband is though. He also says that no matter if NOah has ds or not it is not going to change how he feels about him, or the way he raises him. I agree, now here is the part I hope I don't offend anyone, I on the other hand am very scared, depressed, negative and overwhelmed by all this. In my heart I am seeing him with DS, and I can't help but worry about what life is going to be like. All the dreams I had for him are now crushed. I know I hear how wonderful these kids are, and I so want to believe that. I guess over time I will realize this. I am so worried though, and to be honest, I have selfish feelings of how my life is going to be affected, will I be embarrased by him, etc. I am soo so ashamed of these feelings, but I am just trying to be honest. I have a feeling that the wonderful people on this message board will be able to enlighten me, support me, make me realize that it isn't so bad. It's just so sad, when I think of what life could have been, now I picture that NOah will not speak till he's way older, will not walk till he's at least 4, will not do all the things that typical kids start doing. I am crushed, I can't help but look at him and instead of totally enjoying him or loving him, it is a sad feeling, I can't even totally love him. Am I horrible??? Why do I have to be like this. I hope that I can let go of all these fears adn just love him. Well I will stop for now, I just had to get all this off my chest, my husband does not get it. Thanks for listening, Jessika
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Post by momofrussell on Feb 14, 2008 13:49:01 GMT -5
First off...WELCOME to Unomas and CONGRATS on the birth of your son! Why are you like this? Because you JUST got some life altering news after giving birth to your precious baby boy. That is to be expected...whether it's while you are pregnant and you find out, or you find out after birth..it IS life altering. Even the best of us that bounced back quick STILL felt sad, depressed, confused, etc at first. How you handle it and accept it is up to you in your OWN time... it's ok to feel how you feel. So, first off, know it's REALLY OK to be feeling all you are feeling!!! Don't feel bad for feeling "bad" feelings...it's part of the process. You know, where you are now and where you will be in your walk with Down syndrome say 5 yrs or 10 or 20 yrs from now will always be different. I can't tell you WHEN it will get easier but I can assure you it WILL get easier... the feelings that is. Life is going to be unexpected and what you make of it whether you have a child w/DS or not actually! TRY not to think too far into the future if you can. Some of us are more prone (personality-wise) to worry and think deep into the future, others take it day by day and take it for what is. You really don't know when your son will walk, talk, etc. Some walk at 18 months... some at 2 yrs.. some at 3.. some at 4... some talk early.. some talk later... and so on... it's JUST like a typical child..some do things at a different pace then others. Just w/DS their are delays and it might not be in the time frame you'd expect... but they all get there! Yes, some of us have a rougher road with the DS then others... all of our paths are down the road of DS but some of us, myself included, have extra suitcases we picked up on the way to add to our journey.. some things are unexpected but that is ok. Life is kinda like that and well, I have more struggles with my typical 14 yr old then my son who is going to be 10 and has DS and other things going on with him. So, the DS is nothing for us! And at the end of the day... he is STILL a baby.. a baby boy... YOUR baby boy! so CONGRATS on that! We are here for you no matter WHAT the tests say!!!! And.. I know a few moms in FL if you'd like some contacts in FL I could send you a private message and you can start getting connected with some FL area parents! I think we have some great parents here from FL too!! Again, welcome and congrats!!!!! And remember.. it's OK to be feeling what you are feeling... let it out and let the path begin! A.
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Post by Ericsmomma on Feb 14, 2008 14:03:38 GMT -5
Jessika, Please, don't feel horrible! We've all been there... It is so overwhelming at first..everything is thrown at you at once. Its almost too much for a person to comprehend. First of all, remember you have a BABY! A beautiful little boy that is the result of the love that you and your hubby have for each other. That IS Noah, not the possible diagnosis of Down Syndrome. Do you have much support from your doctors and staff? Sometimes there are people in your area who have been through this and the doc uses them as contact parents. I know that was helpful to me. Like you, I had to wait for the diagnosis. My son, Eric, was 3 weeks old before we knew. And I had the same feelings you have right now...scared, sad, apprehensive..I stayed in bed crying for 2 days! You have these hopes and dreams for your child, and suddenly you need to go down a different path...not a terrible path, but unexpected. My best advice is to enjoy your little son...get to know him and love him up. Put the other stuff (down syndrome) on hold...you can deal with that later if need be. And if he does have Down Syndrome, you will find many loving and knowledgeable people on this site who will welcome you with open arms. Let us know how things turn out. Dolly (Mom to Eric, 7yrs)
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Post by carolyn on Feb 14, 2008 14:10:57 GMT -5
Hi Jessika,
I felt just like you. My son is now 9, and his first few months were very difficult for me, as I had a hard time accepting his Down Syndrome. However, it has turned out to be quite a journey, not always easy, but certainly not as hard as I had expected. Don't feel guilty for having your reaction, it is normal and natural. The doctors love to give you all the worst case situations, and when you look at the list of complications for Downs it is overwhelming. None of our kids are the same, they are as different as the families who love them. So all that said, CONGRATULATIONS on your baby boy. He will be the light of your life- the first time he looks at you and smiles you will be hooked! I promise. Please feel free to contact me anytime, just click on my name in blue and I can get a personal message. Take care yourself and Noah. Carolyn
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Post by Jessie on Feb 14, 2008 14:56:39 GMT -5
Welcome and congratulations on your new baby boy!
I can't really add anything more than what was already said, basically it's ok to feel the way you do. It's a great sign though that you are already reaching out to other people that have been in your exact situation. Please keep posting and let us know how things are going!
Jessie
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Post by wrblack on Feb 14, 2008 15:05:21 GMT -5
Ah, one of the things that online support groups can do, validate your feelings. Sure, it's quite all right and understandable that you feel depressed, scared, and more than a little overwhelmed. Lots of us have BTDT (been there, done that). But it's surprising how many people have such different reactions to the news, or likely news, of Down syndrome. Sometimes mom's reaction is very different from dad's reaction, and vice versa, as Yogi might say. Maybe I should leave it to others, but just a couple of points, cribbing from old posts elsewheres. There's lots of things lots worse than Down syndrome. You probably already knew that. And another thing you probably already knew, you're not alone. Maybe it won't be much help to you, but something another dad wrote several years ago. Trisomy 21 is a pretty big, scary diagnosis for a little baby to be carrying around. Other dad wrote that when he looked at his son early on, about all he could see was the Down syndrome, maybe 95% Down syndrome and only 5% baby boy. But as time passed, that changed. So that, by about age 5, he would see about 80% little boy, 10% dirt, 3% sticks and rocks, 3% bugs and worms, 2% crumbs and food stains, leaving only about 2% for the Down syndrome. Well, something like that, can't remember exactly. It is hard to look beyond the diagnosis early on. But it's sure worth the effort. Wouldn't want to miss out on seeing your beautiful baby boy. Take lots of photos. And do the best you can to take some time just to enjoy your baby. Maybe your husband does get it. Just that he received a different message in a different way. Lean on him if you need to. And be there for him to lean on you when he needs to. Hmm, a snip from some mom's blog that I was reading just the other day:
Many years ago, shortly after Evan was first born, we received a call from a doctor telling us our son might not make it through the night. We had already lost our daughter, Evan's twin; the thought of saying goodbye to another child was more than I could bear. Where I had been strong and steadfast through that first week, Cliff had held back, watching, wondering, no doubt, about what to do with this new kind of fatherhood he'd encountered. Clearly we were very far from The Expectant Father and its pastel rattle. And yet that night, the night Evan nearly didn't make it, my husband proved yet again that he would not need a manual. While I fled Evan's bedside, Cliff sat by the isolette, watched the monitor's awful numbers, listened to the alarms sound over and over again. My husband held our son's two-inch foot while I paced the hallway outside. "I'm sorry," I said when he emerged. "For what?" he asked. "For not being able to handle it." "It's okay," he said, his eyes red, but dry. "That's why there are two of us."
Take care. Post up and let us know how you're doing when you can. -- Bob
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Post by Googsmom aka Jennifer on Feb 14, 2008 15:09:24 GMT -5
First... CONGRATULATIONS on your beautiful baby boy!!! Second....Welcome to the bestest sight out there Third... these feelings are normal. Although personally I never really had them, I was worried. Can't say I wasn't a little. Not worried of what will be, or of the DS, but could I possibally do everything that needed to be done for my little angel. There is alot of stuff to do when you first bring baby home, as w/ any baby. DS is no exception. Hugs, kisses, panny changes, bottles, and burps All that fun stuff. Look around this site. You will see hundereds of mom's and dad's who are loving life w/ DS. It is quite the journey, but it's also the bestest one i've ever taken. I will forever be thankfull that I have my Brookster. She is the light of my life and has shown me so much love. We are here for you, just ask ok. ..... Jennifer
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Post by LisaRI on Feb 14, 2008 16:38:06 GMT -5
Welcome to Unomas Jessika and Congratulations! Here is a beautiful poem. My face may be different But my feelings the same I laugh and I cry And I take pride in my gains I was sent here among you To teach you to love As God in the heavens Looks down from above To Him I'm no different His love knows no bounds It's those here among you In cities and towns That judge me by standards That man has imparted But this family I've chosen Will help me get started For I'm one of the children So special and few That came here to learn The same lessons as you That love is acceptance It must come from the heart We all have the same purpose Though not the same start The Lord gave me life To live and embrace And I'll do it as you do But at my own pace
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Post by LisaRI on Feb 14, 2008 16:42:41 GMT -5
I left out title of poem.... The Creed of Babies with Down syndromeIt's my favorite
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Post by Chris on Feb 14, 2008 17:54:09 GMT -5
Jessika,
First of all, you have your hands full with a newborn and the upcoming move! That would be overwhelming itself and then you throw a possible Ds diagnosis in to top it off, no wonder you are feeling so sad.
I was one of the fortunate few who knew my daughter would be born with Ds when I was 18 weeks pregnant. I was just so grateful that she survived the pregnancy and birth that I was completely overjoyed when she finally arrived. I was amazed at my newborn. She absolutely knew me, her sweet smell was absolutely intoxicating and I fell head over heels in love with her immediately. She was a wonderful sleeper and didn't cry. Wow, life with a baby with Ds was so easy! It did take more time for her to nipple and she was never strong enough to breastfeed but she was a content little baby.
We had a two month honeymoon until she went into heart failure. Then the tough times began. We scraped though this difficult period and I was so thankful that we had those two wonderful months to bond. The fact is that we as parents have gone through so much with our kids with Ds that we are so proud of them.
I may be naive but I don't think I have ever met a parent of a child with Ds who was ashamed of them because they had Ds. Yes, I may be ashamed when Sarah is being horribly disobedient in public but that has nothing to do with Ds! Don't worry, you will love Noah with your whole heart. One thing is for sure, our kids have an extra lovebug gene!
The one thing I have heard from some moms is they wish they hadn't wasted their baby's first months being sad. I know one mom who spent the first three months of her child's life in bed crying. She regrets all the self-pity when she had this wonderful gift in the next room.
My daughter is a very happy little six year old. Yes, she is delayed but not in every area of her life! She is smart, funny, a lovebug, and very stubborn.
Please trust us, your son will be more than wonderful. You will be beaming with pride in all his accomplishments.
Please keep us updated.
Chris
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Post by Myria on Feb 14, 2008 18:02:33 GMT -5
Jessica, First of all I want to send you a big hug! I know this is a lot to take. It is so hard waiting for those test results. It's like you have waited 9 months to see your perfect baby, and to hear that he may have Down syndrome can be completely devastating. I know exactly how you feel, I had the same reaction when my son was born almost 8 months ago. There was never any indication anything was wrong with him on the ultrasound. It felt like a bad dream, like this was never supposed to happen to us. I know right now you are probably doing a ton of research on Down syndrome, trying to find out as much as you can about Noah's future, when will he walk, talk, what his intelligence will be etc.. The best thing I can suggest is to do what you need to do to learn about Ds, and then let Noah teach you. He will show you more about love , life, and yourself than you could ever imagine. I can honestly say that when I look at my son, I do see Down syndrome. But I also see beautiful blue eyes that light up when he sees his daddy, I see a smile that melts my heart just thinking about it. I see a baby who every day learns new things, who every day wakes up with a huge smile and a bunch of babbling, just happy to be here. I see my son, who to me IS perfect. And I wouldn't change a thing about him. I know it may take a while for you to start feeling the way that you "should " about Noah, and the feelings that you are having now are completely normal. Remember that you are not alone, your husband(although not getting how you feel) sounds like he will be a great father. And you will get a ton of support from the great people here. If you ever want to talk, you can PM me anytime. Ya know, I almost forgot- CONGRATULATIONS on the birth of your son! Take care and please let us know how the tests turn out, one way or the other.. ~Myria
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Post by Jodi on Feb 14, 2008 18:11:09 GMT -5
Hi Jessika, All the fears you listed are so normal, so don't feel bad at all for feeling/thinking them. I live just east of LA in the City of Industry. I have a 9 year old son that loves to play x-box. As a matter of fact, he just finished beating all levels on Shrek2. He also likes to play on the Nintendo DS and the Wii. He loves math and reading. Did I mention he has Down syndrome? Things aren't what I thought they were going to be, but they are also not how I envisioned them to be after I got the news. It is still a mystery sometimes. Feel free to contact me. You can PM me if you would like and I will give you my email address if you want to ask more questions but are not comfortable asking them on the board. Everything will work out Jodi
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Post by sandi on Feb 14, 2008 18:27:29 GMT -5
Hi, I have a daughter, Cassie who is 10 months old. She has DS. All my life the one fear I have had is having a child with a disability. I have twins that are 18, and a 12 year old boy as well. When I found out I was preg. and found out I was having the little girl I always wanted, I was so happy. When Cassie was born, I made sure that she was ok. I stared into her face, and looked so careful to see that she was perfect. I called everyone and told them she was perfect, and that nothing was wrong with her. Then the next day, we found out from the nurse that they wanted to do testing for DS. I couldnt believe my ears. I was in total shock. It was like my eyes had been opened and I saw she had DS. My husband said no, she didnt. The nurses said they werent sure because she didnt have all the characteristics. But I knew she did. After a week the test results came back, and they were positive. I had already prepared myself for the outcome anyway. Cassie learnt how to say na na, ba ba and little words like that at 5 months old. Way before my other kids. She was also rolling over at an early age too. I was surprised she was doing these things before my other kids. I have been told that these little ones usually walk around 18 months to 2 years old. She amazes the social workers when they come to see her progress. Yes she is delayed in some things, but not others. She will learn to do things when she is ready. It just means I will get to have my little baby a bit longer. She is rolling and just starting to pivot on the floor(turning to her toys while on her belly) She chatters away all the time. She sure is a daddy's girl and everything is da da. Cassie has been the joy of my life, and here I was so scared to death of having a child like this, and always said, if I did, I would have to give it away. Your feelings will change as time goes on. You will be amazed how your life and others lives around you will change for the better. Your little guy will bring so much laughter and joy to your lives. I sure wouldnt change a thing about Cassie. She is my little girl and I dont even look at her disability. She is just my little girl. Joining a group is one of the best things you can do. Just like the other groups I am in, everyone here sounds just like a family together. I am glad to be here.
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Post by Jackie on Feb 14, 2008 20:27:47 GMT -5
Jessika...your post could have been written by ME ...only I am 27 years down the garden path now...and not only have I survived...I have loved almost every minute of the journey. Em is the youngest of four and all of us have grown and benefitted in many ways because of Emily. You will soon find in yourself...a spirit and a person you never knew existed...but it takes some time. You may not have had exactly the baby you planned to have...but I promise you...you have had a little miracle that you and your husband will learn to love with an intensity you never thought possible. Best advice...get to know in person some parents of babies and younger children with DS...the sooner the better. And hang in there...exhale...and begin loving that babe! I will share my Em with you. I think she is a beautiful young woman ;D Jackie
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Post by Emilysmom on Feb 14, 2008 20:59:04 GMT -5
Jessika, WELCOME To Uno Mas! ! ! Congratulations to you and your husband on Noah's birth!!! I'm looking forward to getting to know him, through you. We found out that our daughter had Down syndrome about 3 weeks before she was born, and the days of waiting for the test results were the hardest days of all!! I believe that all the feelings you're having are totally natural. My best words of "wisdom" are to take one day at a time. Spend time bonding with Noah and notice all the very typical things about him. Babies with Down syndrome are really more LIKE typical babies than they are different. There will be SO many good things; unlimited PROUD moments! It's life-changing, like Adrienne said..........but we are here for you. Please feel free to ask us anything, and share your feelings with us. We'll help in any way we can.
Susan
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