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Post by wrblack on Feb 11, 2005 10:54:08 GMT -5
Hi, Rich, Welcome to Uno Mas. Though it's nice to see another man on the boards, I'm in some ways sorry that you have cause to be here. Wouldn't want to give offence to anyone nor certainly wouldn't want to devalue any of our kids in the least, I was just saying, yet again, the other day that I wouldn't wish a baby with Down syndrome on anybody. Not my best friend, wouldn't want them to have the heartache. And not my worst enemy, wouldn't want them to receive such a blessing. Anyway, I've got just a couple of suggestions. Dr. Leshin's essay on prenatal testing might give you some useful explanation of whatever reports you have received, www.ds-health.com/prenatal.htm And it contains a link to Pam Wilson's essay on Welcoming babies with Down syndrome, www.nas.com/downsyn/welcome.html Here's another link to that same essay in slightly different form and place, www.babycenter.com/refcap/baby/babydevelopment/1817.html An earlier response suggested locating local Ds support groups. Well, here's a link that could help with that, www.ndss.org/content.cfm?fuseaction=InfoRes.SrchFrm Finally, here are 3 books which you and your wife might find useful, helpful, informative, and possibly even entertaining, just now: Babies with Down Syndrome: A New Parents' Guide, 2nd ed. by Karen Stray-Gundersen. Woodbine House, 1995. Choosing Naia: A Family's Journey by Mitchell Zuckoff. Beacon Press, 2002. Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic by Martha Beck. Berkley Publishing Group, 2000. Best of luck and best regards. And please feel free to contact me direct if there's anything I could possibly do to help. -- Bob, just one of several guys who hangs out here
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Post by Cbean on Feb 11, 2005 15:01:31 GMT -5
Welcome Rich!!! So glad you found Uno! Congratulations on what I think I read to be your second baby?
My name is Christine, I live in NJ with my DH, son, 5 and my gorgeous little girl EMILY who was born 12/22/04. I found out through many forms of prenatal testing that my baby would have DS. I was crushed and handled it pretty badly. I cried and mourned the girl I dreamed of and had 5 months to prepare for the girl I was getting. As Renee mentioned, I too looked at so many pic's of babies and kids with DS. I received so many emails from proud parents with links to their's or their children's websites and so many pics - I looked at every single one of them through teary eyes. They were all so beautiful and always made me smile. The people here really helped me heal and prepare me for the Emily - and got me so excited too!
I'm glad I found out when I did because I got rid of a lot of negative feelings prior to my little wonder's arrival. As I was reading your initial post, I felt as if I was reading my own first post - almost identical. I think you'll find the toughest thing is that with all this information, you don't have the most important thing - the baby!!! When Emily was born, I had to wait a while before I held her. When she was finally placed in my arms, all the fear and angst drained from my body. She was just so sweet and so cute and so BIG! I expected this tiny little waif and got a butterball instead. You'll see, the same will happen to you and your wife - you'll receive that little bundle and fall in love with him/her just as my husband and I did. Just like you did with your first born.
My advice is to kick, scream, cry, yell and punch the wall, but only if you're going to fix it afterwards. Then, just get ready for your next arrival. No child comes with a gaurantee. I feel like we're ahead of the game - we already know what to do and are already doing it. Emily is doing things that my first-born wasn't doing!
Everything will be just fine and we'll all be here for you! As Laurie said - babies are well-loved here. I'm so excited for you and hope you will stay with us and post often. Feel free to contact me through email or through a personal message. By the way, do you know the sex? I look forward to hearing more from you and I'm going to bump up a couple of posts for you that I think you'll enjoy.
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Post by RichM on Feb 11, 2005 23:04:13 GMT -5
Hello everyone, I want to thank all of you for all your insights and thoughtful suggestions. Today is a Friday and somewhat normal, the entire house has been infected by my little walking "petri dish", Lauren. (just figured I might use a couple of these smiley things) Although, it's somewhat normal, it's really not. It seems like yesterday was all a blur and today seems like a "snow day" except that it's sunny and cold outside. (we just moved to Morris County, NJ BTW) By that I mean it's kind of wierd because it's another day and things are definately not normal. I got a call from the hospital and the woman on the phone asked for my wife, who was at the doctor's office with bronchitus (it's been a LONG week ) She wasn't here so the woman on the phone said that "she was pre-registered for 2/18) That was it, good by...Now I'm not the brighest bulb in the batch, but I think I had a good idea about what she was saying. My wife, Lisa, came home and said that was a "huge" assumption that was just made by her doctor. But she wasn't surprised. After reading some things, I guess I wasn't surprised either. I'm rambling, so I'm not going to put you all through any more. I think a good night's sleep will help for sure. You all have been very kind and thoughtful. Thanks for taking time out of your day and night to try and help me understand some of the things that we might be feeling. Have a nice evening, morning, day, and weekend. Rich
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Post by momofrussell on Feb 11, 2005 23:46:39 GMT -5
Well, Rich, I guess I am not the brightest bulb either, because I have no clue on what she was talking about! AND... I can ASSUME about what that 2/18 date meant, and I SURE HOPE it's NOT what I am thinking.. and that some doctor ASSUMED something and went ahead with something that you all didn't OK.... Or am I just reading into it too much LOL!? A.
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Post by justinsmom on Feb 12, 2005 8:36:53 GMT -5
Good Morning Rich, I sure hope a good nights sleep did the trick . Ok now I in no way want this to sound like I'm trying to tell you what you should do but just based on the fact the Doc automatically assumed what I hope isn't the case, I would definitely start looking for a new Doc. Hugs and Prayers on the way that your wife and little "petri dish" Lauren feel better real soon. Ok a little more about our Mr. Justin. I can only imagine what you guys are going through as we didn't find out about the DS until 8 hours after Justin was born. As soon as I got to hold him I knew he would be just fine. It was a tough 1month and half but now he's a 4 1/2 yr old little boy with the biggest heart, sweetest kisses, and the tightest hugs. He plays with his friends, loves the Wiggles and Blue Clues, loves his hotwheels and books, loves to go fishing with his daddy and go camping. He goes to Preschool 4 days a week in the afternoon. His best thing is to be a typical little brother and terrorize his older sisters . Some days are going to better than others but for now just take it one day at a time, because no matter what any of us tell you, your mind won't be put at ease until you hold your son/daughter for the very first time and look into that precious little face. Ok now you have probably already read about all the medical issues that are associated with that extra chromosome but here are just a few of the undocumented ones extra sparkle in their eyes, the ability to melt the coldest of hearts with their smiles, the ability to know when mommy or daddy is having a bad day and just come up and give the bestest hugs and kisses EVER!!!!, wake up in the morning smiling and ready to learn something new, to be the smallest and best teachers, ok here's one that at times isn't the best extra- there seems to be an extra streak of stubborness but at times is a good thing . So take a deep breath, and everything you are feeling is completely normal and understandable and at the same time remember it will be OK. Actually my 12 yr. old daughter is our problem one at the moment . But as with "typical" children there are no guarantees, every child is DIFFERENT disability or not some are good at one thing while others are not. There are times I wish Justin would have been born first just so we wouldn't have taken our daughters milestones for granted. I can only tell you that your tears of sadness will soon be turned to tears of joy. Ok now I'm rambling and hopefully this all made sense. God Bless and please keep us posted as some have already mentioned WE LOVE BABIES and especially the PICS ;D. You are already on the right track with looking up and learning all you can and asking for advice, your little bundle of Joy is already one lucky little one
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Post by wrblack on Feb 12, 2005 8:48:15 GMT -5
Well, silly us. I had assumed, because you had come to Uno Mas, that you and your wife had already decided to continue this pregnancy. And silly doctor. Sounds like he/she/they had just assumed that your wife would be going for termination, already have her pre-registered. Maybe just trying to be helpful. I'm really suspect of any numbers here, but I have heard that as much as 90% of people who get a prenatal diagnosis of Ds elect to end the pregnancy. Of course, in some people's book, "termination," "end" are just other words for abortion. And then I've heard the termination for Ds rate in some doctors' practices is only about 60%. Maybe those docs are not so assuming and maybe a bit more informative that your wife's ob/gyn. I wouldn't dare tell you what to decide, though there may be people here who would dare. But maybe I can offer a couple of suggestions on how to decide. Unfortunately, you and your wife will need to think hard and fast--there are real time limits here. I'd suggest you and your wife need to look deep within yourselves and openly share with each other what you find. I think some people who find themselves in a similar difficult situation had already made up their minds beforehand, understood the risks and dangers. Maybe they're the smart ones, but I think they sometimes then only hear what they want to hear. My wife and I think there are people who get a prenatal diagnosis and immediately run to the "Termination for medical reasons" board on BabyCenter, and then there are ones who turn to the Ds board there. You might want to check them both out; here's links bbs.babycenter.com/board/pregnancy/pregnancygrief/4293bbs.babycenter.com/board/baby/babyills/babyconditions/11985If you're religious, that might help. I wouldn't know. But I remember what the dad of a cute, bright, charming, little 6 yo boy said about when they got their prenatal dx. He said, well, I guess this is when we find out how we really feel about life, and family, and God. My only other suggestion is, besides making the best decision you can based on the best info (careful of what you find on the internet, including me) as fast as you can, that I think once you have a decision that you hold on to it firm and fast and never, ever second guess yourselves. Best of luck. I wish you and your wife, and your child or children, well. -- Bob
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Post by sharen on Feb 12, 2005 9:03:43 GMT -5
Congratulation to both you and your wife on your to be bundle of joy Im grandma to Jordan 5 ds and i have recieved custody 2 years ago, and Im 53 , I will tell you he is such a joy. I wouldnt change this for anything in the world. Jordan was god sent and, changed my life for the best . Hugs to both you and your wife!! Jordan's Grandma Sharen
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Post by alisonzmom on Feb 12, 2005 16:31:50 GMT -5
Rich, Welcome to UnoMas! I'm Barb, mom to 22 month old Alison (DS), 8 yr old Sarah, and 14 yr old Caitlin. Like you and your wife, we found out at about 18 or 19 weeks that Alison would be born with DS. My husband and I rode an amazing roller coaster of emotions for a while. Once we got our heads around the situation, we both used the time until she was born to learn about as many of the programs and options that would be available to Alison. We contacted the DS parent group here - they were and continue to be a wonderful support and resource for me. We contacted the Early Intervention program. We were fortunate in a way to have a neighbor whose now 9 yr old daughter has DS so at least we were not in completely uncharted territory. Like so many others have said, all that you are feeling is perfectly normal!!! You will be riding a roller coaster of emotions for a long time... good and bad, happy and sad.... but I can truely say that things will be okay. You and your wife may find this story called "Welcome to Holland" comforting. Here's a link to it.... www.downsyn.com/holland.htmlTry to relax and enjoy the next few months. Things will be ok once you get to hold that precious gift in your arms and look into those gorgeous eyes ( I think that Alison has the most incredibly beautiful eyes!). And know that you're not alone, come and vent, celebrate, whatever, we're all here! Barb
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Post by YoshsMom on Feb 12, 2005 21:30:30 GMT -5
Congratulations Rich and welcome to UNOMAS. I wish I'd found it while I was pregnant.
We also found out about the Ds before our son was born and I'm glad we did because it gave us a chance to grieve for the "perfect baby" we had imagined and get ready for the wonderful child we got. My religion teaches that kids with ds or other special needs have a unique purpose in this world and Yosh's seems to be to bring joy into other people's lives. He certainly brings joy into ours. Dh and I constantly wonder how we got this lucky.
BTW, we're form NJ, too. We live in Passaic County and my sister lives in Morris.
If there is anything you need to know, this is the place to ask.
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Post by laurasnowbird on Feb 13, 2005 10:04:33 GMT -5
Congratulations Rick, and welcome to UnoMas!!
I believe that families have to do what is right for them, and not allow their decision to be swayed by the opinion of others. Having said that, it makes me sad that you are called upon to make a decision at a point where you have only a diagnosis, and no baby to hold. It makes all the difference in the world, I think.
If I have ANY regret, it would be that I regret the fear I felt at his birth, because it has been replaced by a soul-deep love that I can't begin to explain. I used to apologize to God for questioning his will, and wondering why it happened to us. Now I know that it was part of my journey.
Our daughter Victoria was also three when Ethan was born, and she is his best friend in the world. He loves the kids in his play group, but his "sis" is the light of his life. She is endlessly patient with him, and the best "natural" therapist I have ever seen. Yesterday she brought me a book, one that she had made herself, called "My Little Book About Shapes". She knows that we have been working on shape recognition with him, and decided to make him a book to help. He LOVES the book, and pays more attention to it than anything else we have!
I'm glad you found us, and believe me, the benefit goes both ways. You may be new to Uno Mas, but we truly all learn from one another. God bless you and your family. Laura
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