Welcome Cherie

[Guest guest]

Hi Cherie,

Welcome to the board! I am - mother to Ethan who is 3 years old and , 11 months, who has Down Syndrome. We didn't have any prenatal testing either. We were both blown away when we were given the news, shortly after she was born, that they suspected she had Down Syndrome. The doctor then proceeded to point out all of her characteristics in a very clinical way, that made them think she had down syndrome. I felt like I was in a bubble. I felt like we had a dark cloud hanging over us for those first few months. The hospital stay itself was hell. We had to wait for the karyotype to come back to confirm their suspicians. So, the whole time, we were looking at her and wondering. It was awful.

has a rare form of Down Syndrome- translocation Down Syndrome. 25% of the time with translocation Down Syndrome, it is inherited from a parent. The rest of the time, it is just a fluke. We, at my isistence, opted to have the genetic testing, which revealed that I am a carrier of a balanced translocation. So, in addition to trying to take in her diagnosis, I had the added bonus of feeling the guilt that I somehow "gave" it to her. We had always wanted 3 children as well. The balanced translocation was something to deal with in decisions about future children. We were told that we'd have a 10% chance of having another child with DS.

It has been a rocky 11 months but I have to say that I am in a completely different place than I was that first month. I don't know what exactly did it. Some of it was little snipets that I would read on message boards about how others look at it and what a blessing having a child with DS has been in their lives. I think a lot of it was getting to know our little sweet pea. She is such a joy! We were blessed as well to not have any health issues either. I can't imagine dealing with that in addition to all the other stuff.

I do think that everything happens for a reason. I've always thought that. Having really did challenge that a bit. I felt a lot of anger at first- lots of thoughts of "why did God do this to me?" I hate to admit it, but, I too had the thoughts while we were in the hospital of not wanting her, wanting a "do-over", stuff like that. I struggle a lot with the guilt over how long it took me to bond with her. The amazing thing is though, she is such a mommy's girl. She loves me, so much, so unconditionally. Really has taught me some lessons. Sometimes I don't feel like I deserve that. Perhaps that is part of why she is here though.

Anyway, sorry this is such a book! Again, welcome to the board. There are some very wise people here who have helped me tremendously.

Mom to Ethan 3 years old and (DS) 11 monthsSara Greenberg wrote:

From: dcswaby Sent: Thursday, May 05, 2005 1:49 PMTo: 'MultiplesDS@...'Subject: Hello - new here and introducing myselfMy name is Cherie Swaby.I am thinking that my yahoo ID was not a great choice (Cayman mom of twins)since I actually have 4 children, not just twins, and we may not be livingin Grand Cayman forever! We are transplanted Floridians, and lived inville, Florida for 15 years before moving to Grand Cayman 3 yearsago. My children are:Ian - age 11 Grace - age 8Kate and (DS) - age 1 (born 4-24-04)It has been a very traumatic year for us, with twins arriving last April,then Hurricane Ivan in September. Our lives are just beginning to feelsettled again, post-hurricane. The damage here was catastrophic, and thereare still many buildings in disrepair and

stores that have not yetre-opened. But that's another story!I opted out of pre-natal testing, so it was a huge shock to me to find outthat had DS. Their birthday just seemed like a nightmare, instead ofthe joyful day we had anticipated. I thought I would never stop crying. Mysister called me at the hospital and when I told her the news about ,my first words about her were "I don't want her." I bonded with Kateinstantly, just held her and looked into her eyes and fell in love. I didnot want to hold at first, and had a hard time naming her - I justdidn't want to accept that she was mine. But, a year has gone by, andalthough I still feel bitter, as if we were all cheated somehow, I do loveher so very much and just want her to have all the best life has to offer. My two older kids have been a great source of inspiration to me - they hadno pre-conceived notions about DS and simply accepted and loved hercompletely

from day 1. As my son Ian said to me on one of my bad days, "Mom, is fine. She is a healthy baby with just a small chromosome problem."(Ian and have a very special bond.) has a healthy heart, so Iknow we are fortunate in some ways, as 2 of the DS children I met on theisland had heart surgery during their first year.All for now. I am glad to find this board (thanks to Irene who told mysister who told me - thank you, Irene).Cherie SwabyMultiples-DShttp://groups.yahoo.com/group/Multiples-DS __________________________________________________