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Post by Cbean on Aug 13, 2004 15:02:24 GMT -5
Hi everyone, brand spankin' new here. My name is Christine and I am pregnant with child #2. It's a girl and I just found out last Thursday that she has DS. I feel like I have been riding an emotional roller coaster and the ride never stops. Looking through some of the posts, I'm not really sure how to fit in here. I'm really feeling overwhelmed and scared. I'm hoping to find a place where I can find support and offer support and hopefully make some new friends. I want to start educating myself and have so many questions. If anyone has any advice on where's the best place to start, I'd greatly appreciate it. I feel really alone right now. Even in the midst of all my friends who offer so much support. I just can't help but think they'll never understand or know. In fact, I really don't right now either. Thanks for any time you offer. Have a great day!
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Post by donnac on Aug 13, 2004 15:24:01 GMT -5
Hey Christine--
I am still fairly new to this site and don't post much, but wanted to let you know that I know what you are going through. I have a ten year old son, Tyler, with DS. I found out when I was 17 weeks that he had DS. I too felt a bit overwhelmed, nervous, and extremely scared. As you will see in this site, we all love our children tremendously. I was told by another parent that I spoke to before Tyler's birth that all I needed to remember when he was born that he was a baby (my son) first and that the DS was just something that he had. You do worry about all of the health issues that may come up, but once they place your child in your arms, you aren't even thinking about Down syndrome or anything else. You only think about that little miracle that you are holding.
I wish you luck. It took me a lot longer to get up enough courage to begin talking to other parents. You seem to be off to a great start gathering information and support. With this site you will now have many people praying for and thinking of you and your family.
Write back and let us all know when you are due. If you want to e-mail me privately with any questions or concerns, please feel free to click on my name and mail me here through Uno Mas.
Donna
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Post by Evans Dad on Aug 13, 2004 15:27:57 GMT -5
Welcom Christine, Funny seems not too long ago my wife and I came to this site with the same anxiety as you. Our son Evan was born on 12/7/02. We found this site about 2 months before he was born, it was great just to read the various posts about issues with our kids and also the posts about what are kids are really doing. We asked lots of questions... We too felt very scared, in doing our research we stayed away from medical books (they always depict the bad things), there are lots of good books. We found Babies with Down Syndrome (2nd edition) to be the best for new parents. www.woodbinehouse.com is a great place for books about Down Syndrome. Remember that you are not alone, even though we are fairly new parents we have been through a lot, and even the parents with older kids remember exactly what you are going through right now. Family and friends support is amazing, and research is a powerful tool that will only help friends and family support even more. We found our local DS support group before Evan was born and went to meetings where we got to meet kids with DS and ask questions face to face. That was also a big help. We could not have asked for a better son. Evan lights up everyone he is around, I can have the worst day at work and when I get home he makes me feel so awesome that words can't explain it. He is very loving and happy. All of our kids have different traits and personality's, but the one thing they all share is that extra chromosome that makes them so so special. If you have any questions feel free to email me at -- If you are interested in the book I mentioned above send me your full mailing address and I will send them to you. swanny297@yahoo.com Clint
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Post by Cbean on Aug 13, 2004 16:04:45 GMT -5
WOW!!! After I posted my message, I started clicking all over the site: looking at pics and reading all these wonderful stories. Then, feeling like I had enough tears for the day (mostly happy ones!) I checked my email one more time to find I received two postings already. Thank you Donna and Clint! I can tell you I was at other sites where I left posts and I believe they will be growing moldy any moment now. Thank you for your words of encouragement and sharing your stories with me. I have to admit I'm crying again as I'm typing this, but not due to the usual emotions. It's such a relief to find this site and your words were such a great comfort. My daughter is due 12/26/04. My son, who's 4, was due 12/27. Had to have him early, his actual b/d is 12/21. Apparantly I'm only fertile once a year. These two are going to be exactly 5 years apart - can you imagine if it's to the day? If any of you think your Christmas holidays are getting too hectic, just think of me! LOL Clint, thanks for the site...will check on that right away. You both restored some hope back into my heart. For the first time since all of this started, I finally smiled thinking of my due date and seeing it for what it really is: a B-day not D-day!!! I look forward to meeting her and discovering how she will change my life as your children have changed your lives. Again, thank you and don't be surprised if you hear from me! Christine
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Post by meghans_mom on Aug 13, 2004 16:09:01 GMT -5
Welcome Christine and congratulations on your pregnancy! I have a daughter (now 3 1/2) w/ DS and I too found out during my pregnancy that she had DS. I probably am real familiar w/ some of what you are feeling right now!! What area are you in? I'd call the county Early Intervention program to see if there are any support or other type groups in your area. Also, the NDSS and NDSC are both great and have info packets for new parents and parents to be. websites are www.ndsc.org and www.ndss.orgYou can also see if you have a local ARC office -- they can be good pools of information as well I agree w/ Clint that the Babies w/ DS book is a good one, not only for you but for family or friends who may want to learn more. Beware of old or outdated books though (even from 10 yrs ago) the info has changed so much in a short time... eventually - before your daughter is born, you'll want to line up early intervention (that is therapy that your child MAY need, such as physical or occupational therapy)...but you probably have a few months yet, and don't need to overwhelm yourself right now thinking about that. well, hope to hear more about you & your family. when is your due date, by the way? best of luck! laurie - mom to meghan and matthew
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Post by Jenn on Aug 13, 2004 16:14:21 GMT -5
www.nads.orgwww.ds-health.comthese are a couple more good ones to know... and www.upwithdowns.comLook at our links at Up with Downs, there are a few more that can help you. My daughter will be 10 on August 29th! It seems like yesterday she was born though!! Just to let you know, Courtney is my EASIEST child to raise! The boys give me MUCH more grief than her! lol.... Good Luck with the birth and everything that follows. If I can help you in any way, please just ask!! Jenn ps. Courtney has her own site too.... www.teendigs.com/CourtneyGriffith
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Post by Haleysmom on Aug 13, 2004 16:18:13 GMT -5
Hi Christine, Welcome. I have an 8 y/o daughter Haley. She is our only child. I too found out before Haley was born that she had DS so I understand what you are going thru. I thought I'd share with you a booklet that was created by parents of children w/ds that was diagnosed prenatally (sp?). It is called A Light at the End of the Tunnel. Yours truly was honored with naming it ;D ;D. (I'm Susan from RI) I'm putting the link below and as long as you have adobe reader you can open and print/save or whatever. If you don't have Adobe reader there is a link to download that free right there too! Best of luck and I'm sure glad you found us! www.dsaoc.org/prenatal.htm
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Post by YoshsMom on Aug 13, 2004 17:42:24 GMT -5
Hi Christine, I'm Kerri and my son Yosh is 2. Congatulations on your pregnancy! I was glad I learned he had ds during my pregnancy because it gave me a chance to grieve for the child I had imagined before he was born. I hate to be a copycat, but Yosh also lights up the world around him. His dad and I often wonder how we got so lucky. There is a great essay called Welcome to Holland that really describes what its like to have a child with ds. I included a link to it, which will hopefully work. Best of luck and I hope to learn more about you and your family. www.nas.com/downsyn/holland.html
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Post by updowns on Aug 13, 2004 19:42:21 GMT -5
Hi Christine, welcome to Uno and congratulations. My daughter, Sarah, is 12 but I didn't know prenatally that she had DS, so it came as a terrible shock so in a way you are lucky in that you are able to prepare yourself and are over the "Big Shock" before you hold your darling girl in your arms and you will become quite knowledgeable about DS very quickly. I, naturally enough, didn't know very much about DS when Sarah was born but I was a quick learner!
I hope your baby is healthy but if she has some DS health-related problems you will cope and you will find a wealth of knowledge and support here. Welcome.
Stella
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Post by shellk on Aug 13, 2004 19:54:19 GMT -5
Christine,
Welcome and congratulations on your pregnancy. I have a daughter who is 5 Kourtney and I did not know when I was pregnant with her that she had DS..I will say that sitting her looking back know might have made it easier. Although I truly enjoy my daughter and everything about her..It was a shock when we had her..But, hey like you already know remember it is a b-day and nor d-day !!! She will be just like any other little girl. Full of peaches and spice and all things nice..Let us know when she comes we want to see pictures..There are pictures of Kourtney in July and August in the photo album here at the sight.
Congrats !! P.S. I personally love this place and the people that post
Michele
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Post by didmyheartgood on Aug 13, 2004 19:55:18 GMT -5
I am so glad you found this board! This is a great place for you to share your feelings, fears, joys...any and all...
First of all, I want to say Congratulations on your soon to be baby girl. Second of all, I want to say all these feelings you are having is totally normal! I think all of us moms have experienced uneasiness, even sadness, in regards to our children at some point. I know I did!
You are scared because right now the world of DS is unknown.. I promise you, your daughter will show you that it is a truly wonderful world with so many blessings and gifts. It can be scary at times, but everything will fall into place and someday you will reflect and think.."I can't imagine her any other way."
We are here for you... You are not alone in your thoughts or feelings. Even though many of us have had YEARS to come to terms to what it means to be a mother of a child with DS, none of us have forgotten where we started.....It's OK....even when it feels it isn't..
My love and prayers are being sent to you!
Kim (mom to Brace(ds) and Cade 4 year old twins)
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Post by Chris on Aug 13, 2004 20:05:04 GMT -5
Christine,
The doctor suspected my daughter would have Ds when I was 16 weeks pregnant and confirmed it when I was 18 weeks. We found out she had a heart defect two weeks later when I had a fetal echocardiogram. I would recommend that you have one.
I know that you are sad right now but want to assure you that your daughter will be a blessing. Ours has brought so much life and joy into our family. My daughter will be three on September 10. I thank God daily for our little girl.
I wish I had done a couple of things differently when I was pregnant. First, I wish I had met some parents of children with Ds. I was so terrified about what I might find out that I didn't meet any parents until my daughter was four months old. I found that the children with Ds were just like any other kids. Second, I was so worried about losing the baby that I didn't set up her nursery or buy anything for her. If I had to do it over again, I would go all out and make a beautiful nursery and buy a ton of pretty girl clothes. Third, after you are feeling better, tell everyone you know that your daughter has Ds and that it's okay.
The one thing I did right was to name her and start calling her by name. I think it just helped me bond a little earlier. I thought of her as Sarah Grace instead of my baby girl with Ds. When I went to the hospital for her birth, I told everyone that I knew that she had Ds and we were excited to meet her. I think it made it a more joyful occasion for us.
I am so glad that I knew that she would have Ds so early in my pregnancy. I was totally finished grieving by the time she was born. She was a beautiful baby and the very best newborn ever. Honestly, she was sleeping through the night when she was three weeks old!
I would love to talk with you. You can send anyone a personal message if you click on their name. I don't want to broadcast my email address or phone number to the public but will give it to you in a personal message.
Chris
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Post by ashliesmomheidi on Aug 13, 2004 20:42:25 GMT -5
Hello and Welcome!! I am Heidi and have 3 kids, Ashlie is my oldest and is 7 yrs old with DS. I didnt know she had DS until after she was born but I couldnt imagine my life with out her now! She does have her own site at www.babiesonline.com/babies/a/ashlielucille/
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Post by Claire on Aug 13, 2004 21:44:38 GMT -5
Welcome to this wonderful site, and we are all here for you at any time for anything. You could also contact me at my personal e-mal. cladav@puc.net.
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Post by NoahsMommy on Aug 13, 2004 21:53:27 GMT -5
Hi Christine. Congratulations on your upcoming daughter's birth. As everyone else has stated, we understand how you are feeling. My son's name is Noah and he is 20 months old now. I did not know prior to his birth that he had DS so it was a HUGE shock. Those first few weeks it felt like I was living someone else's life. I think acceptance has been the biggest obstacle to overcome. Once I was able to accept this is my baby and he needs me more than ever and that this is just how things are, I was able to love him and just be his Mommy and him just be my baby. I have to say, He is absolutely awesome. I wouldn't trade him for anything in this entire world. He lights up a room like no other and people just walk away from him feeling better. We have had many medical issues to deal with (I won't go into details) so the DS has always been the least of our worries. I think my biggest advice would be to would be sure to get every test they can do to check for any medical problems that may be present at birth. Best of luck to you and your little miracle that awaits to join her family.
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