After 16 years abroad, I moved back to my native Sweden. My husband is Austrian and we met in the US where I lived from 1996-2006, and then we moved to Alp-land aka Austria where we lived til 2013. I am still trying to get over that culture shock.
We have two kids. Vincent, our first born was born on May 12, 2006 with an extra chromosome aka Down syndrome (Translocation 21;21). Edgar was born October 10, 2009, but only 46 chromosomes there.
I admit to thinking it was the end of our world when we got the results of the blood test showing our son had DS, 5 days after Vince was born. I was so wrong! Though everything is not easy, life is a lot of fun! That extra chromosome really did not change much.
I started running again in 2011 and completed my first half marathon in October 2011. In 2012 I completed two half marathons and a handful of other races. Running is now a big part of my life and I run at least five days a week. Both for fun and for peace of mind. I am starting to think a full marathon would be fun. Maybe in 2014...
This blog is about living life Upside Down. Enjoy.
I am mom to a three year old with Down syndrome. I write about him at my blog Pinwheels (I found yours through Rebecca at Always Chaos.) Thanks for sharing your life with readers, it helps people better understand all of our children.
I just knew the address and here I am reading everything about Vincent,You and Booky
First thik I have to say is FELICIDADES ( Congratulations )for the baby it seems that this happens to all of us once we have a son( boy or girl) becomes the reason for our lifes.
Say hello to Booky and Vincent (say Vincent that he has a Mexican friend even if he do no know me).
I came across the blog and enjoyed it very much. My husband and I had our first child on Oct 17,2006, he has T21. His name is Noah James and now 3months 1 wk old. Your blog has been very inspiring for me as I continue to learn more about T21 and more about the adventures of just being a Mom. Stay warm, we just had our first bout of snow ( only 2 “). We live in Exton, Pennsylannia( outside of Philadelphia.
Take care, Terry
My daughter sent your blog to me, I’m passing it on to a friend with a Downes grandson. He is the joy of their lives and soooo happy. You are wonderful to share your life with so many people. I’ll be watching for pic’s as the Prince grows. thank you. p.s. I love his hair!!
I just came across your website and it was very inspiring to me. I just had a son who was born on March 4th with translocation trisomy 21. It has been very difficult with him in the hospital, but to see your son gives me great hope.
Hi! My name is Jennifer and I have no idea how I stumbled on this site. But I had a little boy with DS on 2/16/07. He is actually a twin (he has a non-DS sister). We had just come off a bad week of doctor appts and I read your whole site w/ AMAZING interest. It gave me so much to look forward to! Vince is a Prince and he is a beautiful little boy! While we continue to learn and absorb new facts – we know our little man (Tommy) is a gift to be treasured and your site just only reinforces this in me! Thank you, thank you, thank you! Please email me if you are interested but I just wanted to send my thanks!
In my search of the net I came accross your blog (which is awsome) I was searching “Translocation Trisomy 21″ My daughter Winter Anne Young was born April 27 (7 weeks ago) with TT21. Your blog is inspirational. So hello from Austin Texas, good luck, God bless
As you know, I have been emailing back and forth with Booki and I am so excited to learn about the news of you opening your store – I think you guys rock!!!!!!!
In September I have a new niece or nephew scheduled to arrive into the world so I hope to buy the little guy or lady a new pair of shoes from Vinces store. What a great adventure this must be for you – although I am a little concerned about the quality of the store walls considering whose constructing them :)
Announcing the Down Syndrome Awareness Carnival
I know so many wonderful bloggers out there with someone in their lives who has Down syndrome, and want to share the joy their special person has brought them with the world.
SO, I am hereby starting the first Down Syndrome Awareness Carnival.
Sunday, August 12th, by 12AM EST, will be the deadline for the first carnival. Every Sunday after that, a different blog will host the carnival. So, get your best posts out, and send them in to Blog Carnival or send them into me directly at email@example.com for inclusion in the carnival. Please let me know if you would like to host a carnival, and I’ll set you up. Get ready to meet some wonderful new friends.
Been cruising Graz websites’s as we are coming from New Zealand in a few weeks to attend a Klinik at LKH with our son Charlie. He is just three with DS . Charlie had many severe health problems and is unable to eat. Now he is much healthier we are going to try and wean him from tube feeding to oral feeding and so we are coming to Graz which has a great track record in helping children like Charlie. He is our darling boy and we would go anywhere for him!
Charlie signs beautifully and uses pecs (picture exchange system) to communicate. He is even beginning to recognise and match symbols to words. We only speak one oral language, (I wish I spoke two myself) but using sign language and pictures makes him sort of tri lingual too!
Your son Vincent is gorgeous it was lovely to come across your blog. I don’t have one myself but I only found out about the programme in Austria from another lady in London whose blog I read!
If you have any tips about Graz and children, I’d love to hear them.
Hello from West Virginia. Just wanted to let you know how much I enjoy your blog. I somehow wandered across it looking for something else! I am a 28 year old first time mom. My (almost 2 years old!) son also has a litte something extra. =) He has brought so much joy to our lives. I always enjoy seeing how others are celebrating their wonderful blessings. Keep up the good work!
Har Hittat din blogg på nätet. Kul att läsa, och se Vincent växa upp. Hur går det med Vincent (butiken) ? Ser att Vincent är ingen bebis utan en pojke. De växer så fort.
Vi ses i Stockholm i jan.
Sara (Vincent i Malmö)
Came across your site he’s a cutie. We have a son Richard (Duke) who was born w/ a translocation of Chromosome 1 to 12. He is 15 now and is a handful but what a blessing in diguise. He does not walk by himself (walker) he does not talk or feed himself either. He is app 50 pounds but gets into everything. He eats all the food we do and he eats liek a horse LOL. I just wanted to say hello and admire you all for putting this blog up. Take care and every day is a blessing.
I have no memory of how I came across your blog, but I’m so glad I did. I love seeing pictures of Vince, and I absolutely love the name “Prince Vince” – he is a prince. You’re very lucky parents. My kids are teenagers now (14 & 17 – both girls) and I miss them as little ones. Now they’re just mouthy teenagers! Thanks for sharing your wonderful family and life with us.
Our son Wyatt was born on April 6, 2007 with an extra chromosome (Down syndrome) (Translocation 21; 21). Like you I had no idea he would be born that way. I was aware that I may have a child with downs because I am a carrier of the gene. I have a cousin who has down’s and when she was born they did a study on our family. I have 2 other children who where born normal, so when Wyatt was born it caught me off guard for a bit but then we where in go mode! He has antorvantricular canal heart defect and a hernia also he has some lung issues but all in all we have been very blessed. Wyatt does not act like a typical child with down’s. He is actually on cue for all the developmental mile stones. Which is amazing since he is a full blown Down syndrome person? We look at him with amazement everyday. We love all our children but Wyatt is so sweet and so precious I could not imagine my life with out him! I love your blog and it’s hard for others sometimes to understand what it’s like for parents who have children with a disability. I think some people take things for granted. Our biggest concern was Wyatt’s health. He is doing much better and will have to have heart surgery by school age. Which is a miracle because they wanted to do it when he was 6 weeks old? They have waited and he has made it this far with no medicine and one hole looks like it’s closing. We have gone through so much the first year of his life and I don’t think I ever cried over him being Down syndrome just remembers crying over how much his life meant to me and how scared I was that he may not live. I still feel that way sometimes and I just have to trust in God that this person was a gift to me and he was meant to be in outlives. I would love for some feedback if anyone is interested in talking to me. My e-mail is firstname.lastname@example.org Thank you for sharing your wonderful life with us! Much happiness to you Christina and your family!
Vilken jättefin blogg du har! Tack för att DU tipsade mig via Familjeliv och tack för att du delar med er av hur din familjs vardag ser ut och dina tankar om livet!
Är själv mamma till en kille på 18 månader som har det lilla x-tra. Det har varit otroligt befriande att läsa din blogg, jag känner nämligen igen oss själva väldigt mycket. Resan i livets berg-och-dalbana; från totalt kaos till ett liv som inte alls känns så tokigt tillsammans med ett underbart litet charmtroll.
Jag jobbar som logoped inom barn- och ungdomshabilitering i Sverige. Det innebär att jag i mitt arbete träffar många familjer där en av familjemedlemmarna har ett funktionshinder. Rätt som det var en dag upptäckte jag att blog-världen ju är fylld med fantastiska föräldrar som bloggar om sig och om livet med sina barn. Det är väldigt lärorikt att läsa era bloggar och få insyn i “föräldraperspektivet” på barn med funktionshinder. Jag tror helt klart att det hjälper mig att bli proffsigare och bättre som logoped när jag sedan möter “mina” familjer. Dessutom är det spännande läsning helt enkelt!
En extra guldkant ger din blog iom att ni bor i Österrike. Jag har själv varit där en hel del, så det är kul att läsa om er vardag även ur det perspektivet.
Ojoj, en alldeles för lång kommentar, men kort och gott: tack!
your little man so cute. I am a 29 yr old mother to a daughter with Downs. Stephanie was born March 2, 2006 two months early and spent 8 days in the NICU in Rapid City SD. She is the joy of my life. One day I want to put up a page like yours. Thanks you for making it easier for the rest of us to express out feeling to the world. Most parents aren’t as EXCEPTING as we are and therefore we are truly blessed with our Angels.
I too have a son (Daniel) born with Translocation. A piece of his however brok off an re located.attached itself to #14. He is now 13 and I wouldn’t trad a minute of his life for nothin!! I have learned so much and he has done so much over the past 13 years. Feel free to contact me; I would love to chat. Your son is adorable!!!
I share a similar situation with you. I am a 33 year old Californian who recently found out my unborn son was a carrier of Robertsonian Downs Syndrome. I have questions that I was hoping you could help me find answers to. Some of my story is of a personal nature and I would feel more comfortable discussing it with you through e-mail. Would it be possible to get your e-mail address so I can contact you. Or you can reach me at the one given. Your story has been comforting to me and I’m thankful that you were willing to share it. Thank you!
Yours was the first blog about another boy with DS that I ever saw. I remember the day that I first read your blog. I don’t think that Hunter was even a month old! I was still struggling with the news emotionally and was surfing the net looking for info and support. And then I saw Vincent! and fell in love. His beautiful eyes, his smile, his wonderfully blond hair, completely changed the way I saw my Hunter boy’s future. I could see My Baby Hunter in Vincents Newborn baby pictures! I couldn’t get over how well Vincent was doing and how happy you and he and dad were doing!
What a difference you made in my life. Thank you from the bottom of my heart. At such a difficult time in my life You and Vincent brought me a new kind of hope! And now look! I have my own blog!
Sappy Stuff aside !! I would love to get some Vincent shoes for Hunter! Where can I get my hands on a catalog?
Hopefully I can find Vincent Shoes online through google!!
Our wonderful grandson, Alexander Scott Frost, was born 11/21/08. He has translocation 21.21. Our son is the carrier and blaming himself. I know in time he will realize it is no one’s fault. He loves Alex very much.
Our family is loving and supportive and Alex is our precious boy. We are truly blessed. He will make better people out of all of us.
Hello Christina and Sweet Vincent,
After a whole web search i have found your website and read most of the pages that i am interested about translocation type of the Down Syndrome, me and my wife are waiting a baby that she is now 7 months last 2 months b4 she born, when we went to doctor at the week of 12 and doctor made the CVS and amniocentesis when we got the results it was “46,XX,der(21;21),(q10;q10),?” when we first hear it we cryed alot but it doesn’t help to the baby, now we are used to it, i am searching alot about that type of translocation how it would fact to the baby and i think Vince is the same type of that translocation type, i will be in touch with you christina and i tihnk i iwll learn alot from you if our baby will really born with DS, we are praying to GOD if it will not be resulted as DS but everything is in his hands now we can only wait til the born of baby.
When i need information i hope you can help me everytime, i will be looking forward to hear from you soon christina,
Ahmet Cemil KUŞCU
Master Architect from TURKEY, Kocaeli
Mail Address: email@example.com
Hi my name is Elda and I just find out about my baby has (Translocation 21;21). I will like to know more about this condition but is not many websites. Please help me understand what my baby name Jordan is gonna go true he is just 2 weeks old. Thanks.
my name is Katalin Revesz.
I am a student with the Teacher College of the Eötvös
Lorand University in Hungary. I am currently majoring in Special Education with special emphasis on individuals with Down syndrome. My research project is designed to impact and improve the way individuals with Down syndrome are perceived in Hungary.
I began reading blogs related to Down syndrome 2 years ago in an attempt to improve my own English regarding the subject. I quickly realized there are very few blogs about Down syndrome in Hungary although 170 children are born in this country with Down syndrome each year.
This is my final year and I am gathering data to complete my thesis. You have been contacted because of your own involvement in a Down syndrome-specific blog. Specifically, I am working to establish what impact blogging about Down syndrome has had on the families raising children with Down syndrome. My survey is short and easily completed in under 10 minutes. It can be answered anonymously without compromising your family or child’s privacy.
If you would be willing to participate in this short survey, please follow the link below.
Also, if you would be willing to forward this email to other families that meet the survey’s criteria, it would be VERY much appreciated.
Please feel free to contact me personally to establish that this is NOT a spam-generated email and to ask any further questions you need in order to establish my educational credentials.
Katalin Revesz Eötvös Lorand University in Hungary
p.s.: I received enormous help for writing this letter, because of my poor english!
Thanks for Courtney Heigele! :)
I just found out that my son born July 18, 2011 has the 21/21 translocation, he has one daughter from another marriage and we had another daughter together before. Now my husband and I are waiting on the results of our blood tests to see if we are a carrier. I love your blog, keep up the good work!
Thanks for sharing your life. I just came across this blog when i searched for down syndrom. I just got my first baby girl and she also have down syndrom. i was sad at first thinking my life will be less fun now but im more positive now and trying to learn more and your blog is good to make me more hopefull. have a nice day.
My little Sweet Pea was diagnosed at birth based on physical characteristics and we just learned recently that she has the 21;21 translocation. Like you, my husband and I aren’t carriers (we have 3 other children). I ran across your blog when I was looking for more information.
Hello Prince Vince and family,
it’s through Big Ben Benjamin’s blog that we found your blog. our son Jules also has translocation 21;21 – we’re actually waiting for the results of our genetical testing – so quite nervous right now! If you like to visit our blog: julesraconte.blogspot.com
By the way, we just love your blog!
My name is Sarah. My oldest son, Josiah has robertsonian translocation of the 21st chromosome as well. He has been such a joy. He was born dec of 2007. My second son has been a huge help in language development. He was born in oct of 2009. We now have a little girl as well who is almost one. He is a great big brother. It is nice to know that there are others out the who are still trying to discover new friends with similar life situations. I would love to hear any advice anyone may have… Thanks!
Hi, my girl Melissa is 6 now, and has 21;21 to 21together, she has no health problems, she is still on nappies but we are working on that. She is attending a school for handicap children, and she is doing so well, especially with hand signing. She signs and says the word. We are so blessed to have her she is a angel!!