tag:blogger.com,1999:blog-4901975288204908132.post6056347544288553110..comments2023-10-26T08:13:46.846-04:00Comments on our perfectly imperfect life: reflection... six years later.Bethanyhttp://www.blogger.com/profile/09481397897364739480noreply@blogger.comBlogger118125tag:blogger.com,1999:blog-4901975288204908132.post-21241291624228116912012-03-07T17:17:08.400-05:002012-03-07T17:17:08.400-05:00Nicole, if your little one ends up having a heart ...Nicole, if your little one ends up having a heart defect, many of us have been there, too. We're still here for you! :)Kristinhttps://www.blogger.com/profile/11988590894638135312noreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-40195517634194091052012-03-07T17:14:01.623-05:002012-03-07T17:14:01.623-05:00Thank you so much for the update and even more so,...Thank you so much for the update and even more so, for your kind words. Best wishes to you and many prayers for an uneventful pregnancy from here on out! :)Bethanyhttps://www.blogger.com/profile/09481397897364739480noreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-45417254096783522412012-03-07T17:01:08.357-05:002012-03-07T17:01:08.357-05:00Hi Bethany-
Today the genetic doctor called and sa...Hi Bethany-<br />Today the genetic doctor called and said we were all clear for T13, T18 and T21. We certainly were not expecting that but are pleasantly surprised. We will go ahead with heart testing starting in 3 weeks. Again, all of you are amazing women and mothers. You helped me accept what was on our plate and have changed my views about Down Syndrome. I'm so glad there are people like you all in the world to help people like me and others. Blessings and Much Love ~NicoleNicolenoreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-31719690348713623532012-03-07T12:16:30.433-05:002012-03-07T12:16:30.433-05:00Hi Nicole -- thank you so much for the update. I h...Hi Nicole -- thank you so much for the update. I have been wondering when your amnio was. No matter which way the pendulum swings -- the most important thing is that you love your baby. Everything else will fall into place. :)Bethanyhttps://www.blogger.com/profile/09481397897364739480noreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-55885412381941576112012-03-07T10:58:32.991-05:002012-03-07T10:58:32.991-05:00Hello Everyone-
So we had our amnio done on Monday...Hello Everyone-<br />So we had our amnio done on Monday and today is the day we should get our results for T21, T13 and T18. I don't think I've ever been so anxious in my life. If our baby has DS, hopefully I can contact many of you for support. I've already done that with some people. If our baby does not have DS, I may be here inquiring in the future about heart defects as I'm sure some of you have walked that path. There is a chance that our baby may not have anything I mentioned above and in that case, I thank you all for such support. Had I not come here, I may be in a very different place right now. I'm sure you all know how great it feels for another person to just simply say "I know where you are. I've been there and I'm here if you need to talk" It's so much more than words and I can't thank you all enough for being so kind. I'll let everyone know our results once I compose myself enough to share.<br />~NicoleNicolenoreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-51782312238131477262012-03-02T21:58:16.075-05:002012-03-02T21:58:16.075-05:00Thank You :) I got your emails and generous offer...Thank You :) I got your emails and generous offer. Everyone has been so helpful. I'm still amazed.<br />~NicoleAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-16041096084334004332012-03-02T12:15:42.987-05:002012-03-02T12:15:42.987-05:00Hey, Nicole. Did you just say you're in Duluth...Hey, Nicole. Did you just say you're in Duluth? I've heard there's a pretty big group there. http://www.downupnorth.com/<br />Looks like there's a moms night out on Monday, if you're feeling adventurous! :-)<br />I haven't met anyone from Duluth (I live in Eden Prairie). But I've also heard that there are about 1,000 at the Step Up for Down Syndrome walk in Duluth (last Sunday in September, the same weekend as the one in St. Paul), so that tells me that there's great community support up there.<br /><br />Please let me know if you get down to the Twin Cities. I'd love to show off Micah. He's a hoot and a half... STRUTS into preschool in the morning, thinking he's big man on campus, waving to everyone he passes and saying, "Hi, Miss Katie," etc. He was the first kid in his 3yr old preschool class to know the names of all 20 kids in his class (my SIX year old "typically-developing" kid doesn't know all the kids in his class!). He also entered preschool knowing his upper- and lower-case letters, colors, numbers to 12, and shapes (though rhombus is a bit confusing... he still wants to say diamond... can't blame him!).<br /><br />Life has not been "easy" with Micah, but it's been more rewarding than I can put into words. He didn't walk until he was 3 1/2 (I won't go into all of the medical reasons behind that particular delay). He's small (still in 18mo pants at age 4) and he doesn't like to do art AT ALL. But even the grumpiest person will smile when Micah laughs. I can't tell you how many strangers have told me, "He just made my day!"<br /><br />If I remember right, your odds are about 1:20? So, odds are against you getting blessed with a child with Down syndrome. But I love how you have been seeking information. At the very least, you've been introduced to a super great group of parents whose strength and courage astound me daily. :-)Jenniehttps://www.blogger.com/profile/06617791426447246761noreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-25530601412794944942012-03-01T23:34:00.629-05:002012-03-01T23:34:00.629-05:00Nicole,
I am so happy after reading your last pos...Nicole, <br />I am so happy after reading your last post. Chills down my body. We are all here for you!Catherine Finnhttps://www.blogger.com/profile/07348893363624560671noreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-84682902867696569372012-03-01T03:12:50.789-05:002012-03-01T03:12:50.789-05:00imeant to say enjoy ur pregnancy ..remember there ...imeant to say enjoy ur pregnancy ..remember there is a huge community of families out ther with a child/adult who has DS...you are never alone .yvettes aunts,uncles and all my friends love her to bits ..i am on fb and found you through another mum in my network of mums from around the worls..love and hugs from across the pond ..christina lejeannoreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-59547486148469463262012-03-01T03:06:59.590-05:002012-03-01T03:06:59.590-05:00dear annoymous,my daughter yvette is 32years old a...dear annoymous,my daughter yvette is 32years old and has DS..i didnt find out until she was 5months old..was i disappointed ? yes i was . was i scared of the unknown? yes i was .i had a very traumatic pregnancy and lost yvettes twin about half way through .after i found out about yvette having DS i went into a period of why me ,how will i cope..what will her life be like..yvette isnt as you have said high functioning but she is a very happy young lady and we do all the normal things together going out for meals,going to parties,going to the pub fora drink,taking the dog for a walk etc ect...ok she has never been able to work,read ot write but she has a memory span that i would be proud to have...now the big question to abort or not .imo no you should go ahead with the pregnancy..why you may ask..if you dont you wtll never know the neverending love and pleasure your baby will bring to you..christina lejeannoreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-77910307767651084782012-03-01T01:07:28.405-05:002012-03-01T01:07:28.405-05:00You can do it. I was in your shoes... I really was...You can do it. I was in your shoes... I really was... and 3 years later I am ashamed that I ever considered abortion or adoption. The Medical community is crap. I did not think I could do it. And now my beautiful, vibrant, intelligent, playful and stubborn Gabriel is the best thing I have ever done. Every one absolutely loves him as everyone in your life and who will come into your life will love this baby of yours. It's not a joke... honest. It's a blessing... that baby will teach you so much about life it will amaze you. And your daughters will love this baby fiercely. Trust your mother's heart... not your head. YOU CAN DO THIS... I promise.Bobbiehttp://zebrapumps.blogspot.com/noreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-20633269660614700292012-02-29T22:14:50.957-05:002012-02-29T22:14:50.957-05:00LOL! How is that for not saying much... :)LOL! How is that for not saying much... :)JTGsMOMhttps://www.blogger.com/profile/01243426397272610382noreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-77891830667509326772012-02-29T22:13:47.858-05:002012-02-29T22:13:47.858-05:00Hi Nicole- I did not reply earlier because I did ...Hi Nicole- I did not reply earlier because I did not feel that I could add more. I will say that I have a son with DS. A lot of people describe their children with DS as "the light of their life". It is amazing how many people spontaneously say that! It is so true. I hope that you get to feel that wonderful life warming love! You and your family will be changed forever in a very positive way! I promise! I did not know that my son had down syndrome until he was born. He was born on a holiday. A nurse at the hospital told me that I must be special because God only gives these babies to special people. I probably gave her the ugliest look I could conjure up! It took 7 days to get the results. I cried before I got them - I knew in my heart. I cried and cried and cried for weeks when I found out. My SIL called me and asked me if I was ok? I said "no!" and hung up! Then I did research. I came upon the poem "Welcome to Holland" (glad you read that) and then I read that babies with DS are just babies. I started to feel better. Then one of my friends arranged a meeting with me and a mom and her son with down syndrome. He was so dang cute and loving and fun. He just made my day! Then I cried because I felt so bad about crying... Now I cry because I am so proud of my son! He is amazing! When he hits a milesotne, WOW! So much more special! We celebrate him! He just turned 4 years old. He works so hard. We started therapy at 6 weeks. I am not mother of the year, but he teaches me. I have learned how to love deeper and he teaches me patience. It is amazing! This is such an amazing journey. I hope you join us! You won't regret it. I know how you feel now, but I promise you will not regret it! I am not saying that it is easy. It is not, but so worth it!<br /><br />On another note, my sister lives in MN. I know through her that there are services you can recieve through the state. It typically does not matter what your financial status is, because your baby has DS, you qualify. You will get the help you need! Please feel free to email me or find me on facebook! I pray for you to make the decision you feel in your heart. Jamie Rogers (Imjme4@gmail.com)JTGsMOMhttps://www.blogger.com/profile/01243426397272610382noreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-75904282009657674682012-02-29T20:37:30.071-05:002012-02-29T20:37:30.071-05:00Hi, there, My daughter, youngest of 6 kids has Dow...Hi, there, My daughter, youngest of 6 kids has Down Sydrome, she has had her trials, medically, thers always a chance there will be issues with any child. I heard a quote a few times and I immediately thought of it when I read your story. It is simply " I never knew I wanted a child with Down Syndrome until I had one" welcome to holland Anon, it's going to be an amazing beautifully life, I think you know what you want to do, Bethany can connect you to a wonderfull huge worl on FB of support. :)Kathleenhttps://www.blogger.com/profile/16450633080211073505noreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-11398969364992694802012-02-29T19:13:03.706-05:002012-02-29T19:13:03.706-05:00OH tears running down my face to read your post Ni...OH tears running down my face to read your post Nicole!! As Bethany and so many others have shared, our community is nothing short of amazing and strong....we are mommas that are fearless for each other and our kiddos. There's nothing that none of us won't do for one another...so that is the reason for so many people responding to your need for advice. As I said in my comment above somewhere (LOL!), I have never heard any mom ever regret having and keeping their child...everyone always says how much of a blessing their child is to them and their families...<br /><br />Once you find out for sure, and even if the test is negative, join FB if you haven't already, and you will be scooped up by hundreds of women (and some dads too) to help you in any way possible and join you on your wonderful journey! You may feel like you are alone now, but there is a cyber community that will become like family...it's a wonderful thing and a privilege to be part of it! Any questions you may have will be answered in seconds...it's better than having a doctor on speed dial! And we all love looking at photos of our kids...and reading about all the milestones. So we're ready when and if you are...<br /><br />I'll be praying for you!Deannahttps://www.blogger.com/profile/08353816879646103282noreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-2553769652747977112012-02-29T18:47:26.795-05:002012-02-29T18:47:26.795-05:00Oh Nicole, I'm SO HAPPY to read this!!! You w...Oh Nicole, I'm SO HAPPY to read this!!! You will be a wonderful mother to this baby...just as you already are to your other two girls! If you have a facebook, add me: Holly Guillory Fedele. I have a blog as well, but it is new and has very little in it. Still contact the local society because they may have smaller chapters near you or at least can put you in touch with a family near you.Holly Fedelehttps://www.blogger.com/profile/15859850388777427849noreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-90062295228574219962012-02-29T16:10:11.063-05:002012-02-29T16:10:11.063-05:00I'm in Duluth, so Hibbing is about 80 miles no...I'm in Duluth, so Hibbing is about 80 miles north of me :)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-33398383038137371812012-02-29T15:11:22.399-05:002012-02-29T15:11:22.399-05:00And I'm so happy you can feel the love. This c...And I'm so happy you can feel the love. This community is amazing and mighty. ;)Bethanyhttps://www.blogger.com/profile/09481397897364739480noreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-12632008001321703242012-02-29T15:09:39.696-05:002012-02-29T15:09:39.696-05:00How far are you from Hibbing? I have a friend ther...How far are you from Hibbing? I have a friend there that has a child with DS.Bethanyhttps://www.blogger.com/profile/09481397897364739480noreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-364705090894089662012-02-29T13:39:23.625-05:002012-02-29T13:39:23.625-05:00Nicole, you are so right about feeling alone, but ...Nicole, you are so right about feeling alone, but there are truly some amazing families that are so willing to share their experiences with you. I found Downsyn.com after my Avery was born with DS and this group (Bethany and many more of these women that responded so far to your posts) really helped me to deal with my thoughts and feelings. I am forever grateful to them for the love and support and now I have started my own support group in my area and I am happy to lend a helping hand to my extended family in their journey. I do have to say one more thing about siblings...I was fearful that this was a heavy load on my oldest daughter and it turns out that having a sister with DS gave her so many things:patience, strength, understanding, acceptance, and a voice. She is Avery's biggest advocate and she loves her little sister dearly. Avery has enriched all of our lives and while I still have the "what-ifs" once in a while it is quickly squelched by all the love and compassion that we have all gained by living with our little sweetheart! So happy to hear that today is a better day for you. It does get better and easier as time passes. Until one day you get ready for bed and realize that you didn't even think about DS that day...it really does happen! Good luck to you!Kathleen Tealnoreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-80821779103745814972012-02-29T13:27:44.308-05:002012-02-29T13:27:44.308-05:00Nicole - I fell upon this blog today, and I am so ...Nicole - I fell upon this blog today, and I am so glad I did. I was in your shoes a little over 2 years ago. We were given a 1 in 5 chance for DS after my first trimeter screening. We decided to go ahead with the amnio at 18 weeks and our daughter's diagnosis was confirmed. I can tell you that waiting to hear the results was actually worse than "the phone call". Yes, I cried and cried a lot. I was scared and angry and worried so much about my older son. I can tell you though that I would not change a thing about my daughter. She is 2 now and walking around and pushing limits, jut like any other 2 year old :) I have seen a side of myself, my husband and my older son that I never thought I would. Every day is not easy, but I can promise you that there is nothing terrible about DS. Wishing you comfort in your waiting time.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-68540440910480530882012-02-29T13:08:58.711-05:002012-02-29T13:08:58.711-05:00I meant to write ' a Minneapolis Chapter for D...I meant to write ' a Minneapolis Chapter for DS but that's 155 miles south of my home'Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-66530758805295289082012-02-29T13:06:34.426-05:002012-02-29T13:06:34.426-05:00I'm just stunned at how many people have respo...I'm just stunned at how many people have responded an emailed me. I felt so alone with my thoughts and fears. I know we don't have a diagnosis yet, but our odds are not good, so I felt I should prepare myself now, rather than waiting until our world was turned upside down again. It's amazing how willing people are to talk to a total stranger, how so many of you can feel my pain, my fear, my sadness, my uncertainty. Today was the first day that I woke up hopeful that life might be alright with this little person whom we wanted so much...no matter how many chromosomes he / she has. I wish you all lived closer as I feel pretty alone up here on Lake Superior (minus the blizzard that's currently dropping 16 inches of snow at my house as I type). There's a Minneapoluc chapter for DS, but that 155 miles away. I feel, after talking with you all and hearing your stories, that the phonecall from the geneticist won't be as painful as I imagined. I'm so glad to have found this site. The other day, a patient said to me, 'You know honey, God only gives these babies to special people and you're a pretty special lady'...I wanted to believe her...and now I think she may be right :)<br />Thank You All<br />~NicoleAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-73601489633654604822012-02-29T12:13:58.655-05:002012-02-29T12:13:58.655-05:00Nicole- I posted earlier- and I know that so many ...Nicole- I posted earlier- and I know that so many parents from around the world are here to support you. I have over 700 friends on FB, and about 500 of them are moms and dads of children with Down Syndrome. There is such a great network of parents- and that is something that I wish I had had just 6 and a half years ago when I was pregnant. We are all praying for you and your family.Please feel free to request me on Fb if you would like also. Johannah Bruns Back.Johannahhttps://www.blogger.com/profile/12278909237343224209noreply@blogger.comtag:blogger.com,1999:blog-4901975288204908132.post-6093903521611032432012-02-29T11:11:04.204-05:002012-02-29T11:11:04.204-05:00Hello Nicole! I just wanted to comment and say tha...Hello Nicole! I just wanted to comment and say that one of the most beautiful things that will happen to your family is to watch your two girls love your baby unconditionally. Many times that will help your heart heal to watch them love the new baby with no judgement, just pure love. I loved watching my son accept our daughter. Now I watch our daughter (almost 3) love our new baby. She is an amazing big sister! My kids have such an loving amazing relationship, normal in every aspect. I know that little wave was your baby telling you that everything is going to be ok. I don't have a blog personally but check out a couple of my favorite...http://pudgeandzippy.blogspot.com/ and http://www.kellehampton.com/ both Moms have great blogs. You and your husband can do this!! Love will guide you in raising your child just like it does with your two girls. You are already fighting and advocating for this baby. Keep fighting, praying and loving your baby Momma!!Anonymousnoreply@blogger.com