Post by violettesmom on Aug 4, 2007 18:42:24 GMT -5
Thanks so much! I'm fine with modifications, but it is important to me as much because I think it will help the older girls realize that the rules for Violette are the same as the rules for them.
I've always, at least during the morning and at night time, tried to follow really good routines. We put all of my school aged daughters clothing for the week in her closet including socks, underwear, etc. on Sunday. I create laminated routine charts I make up every year for morning and evening - they are step by step with pictures of what is expected of her. I'll use them and create them for my 2 year old, and Violette as well! Sounds like she may really like them!
Post by violettesmom on Aug 4, 2007 15:55:38 GMT -5
Ok, this will probably sound crazy (especially knowing my dd is only 5 weeks old, lol), and I think I know the answer, but is it unreasonable to expect that someday Violette will have manners as nice as my older girls? I don't care if it is signed or spoken, but in our house you interrupt with the words, "Excuse me mommy, may I please..." and you leave the table with the works "may I please be excused daddy."
Believe me at a very young age with the older ones I've been very demanding about this. I feel like being polite should be an automatic skill for a child, and they should use polite words without even thinking about it. And I think it is a skill that lasts a lifetime and really sets a good impression with anyone one you meet.
Well, that's how I feel about my typical children anyway. Should I set a different expectation for Miss Violette?
Post by violettesmom on Jul 17, 2007 18:28:22 GMT -5
Thank you for the nice welcome! I've been active on message boards for all three of my children (and actually my October 99 board is a proboard board, so this seems really familar to me!) I'm looking forward to a whole new set of cyberfriends here!
This is really long...bear with me!!!!
This is the story of how Violette came into our lives. We had been given 1 in 16 odds for a child with DS (based mostly on my age 40, a "slightly low blood reading on one part of the blood test and a slightly high but normal NT reading). We knew we'd love the baby no matter what, and accept her. I wasn't up for the amnio because of the risks to any baby, and felt comfortable if the level 2 showed everything was good, I'd be fine with what ever baby came into my life. I'm not much a worrier, so I knew I could really enjoy my pregnancy even with a big "if" surrounding it. The level 2 and echocardiogram came back perfect with no soft markers. So I just enjoyed my pregnancy which was exaclty like my other two!
Violette Hope came into the world on 6/26. She is beautiful, perfect, adorable, alert and she has Down Syndrome! I've said each of my children have surprised me - one is a lefty, one has curly hair, and now, I've had one very special surprise!
Monday afternoon I had a prenatal massage. My therapist, who is wonderful, asked me if I wanted her to "get things started" I said, sure! Well, it worked. She pushed on my ankles and a spot on my inner calf.
So, anyway, Monday night, like every other night for a while, I had a bunch of contractions. I said to Steve at about 8 p.m. that I thought I'd go upstairs and see if I could figure out how close they were. Well, at about 9:30 I still couldn't see any rhyme or reason, but thought I'd better pack my bag just in case. At 10 till 12, I said to Steve, let's call mom now - I'm not sure if this is it or not, but it will be easier to call her now. I was just going to go to the hospital to let them check me, but Steve insisted that in addition to that he should call my girlfriend who was going to deliver me. She talked to me and said, yes, I think you ought to get over there and I'll meet you there (she said she though "OH SH$T, I hope she gets there in time.) Mom came over, and I could hardly walk during contractions. Anyway, we headed to the hospital...got in and got to the desk. I had a ton of back labor. We got there around 12:20. They checked me in right away, and my friend showed up. Megan checked me and said "Well, I'd have to call this a good 8 cm. We better get you into the room. We got into the room, and they got cracking on the epidural. I started shaking, so I suspect that I had gotten into transistion.
Anyway, then I got the epi and felt a lot better. Megan, my doc and friend said she was going to go and catch a nap, that it would be an hour or two. She left, and the girls came about 5 minutes later and checked the machine. Sure enough, it didn't appear to be working and she couldn't find the baby. Well, she told her other nurse to check me, and sure enough, the baby was down in the birth canal. They told me to start pushing - I'm thinking WHAT? Anyway, I pushed two or 3 times (this was at about 2:10) and whoosh, out she came. Steve said "It's a GIRL!" And I said "I KNEW IT" Megan handed her to the nurses. And I immediatly said "Is she ok Megan?" And she said she is perfect and beautiful, and I'm very sure she has Down Syndrome. I said "Oh Shoot", and then started calling to Steve, who was busy enjoying the baby and told him. He was so confused at first, I think...I don't think he really prepared himself at all that this could be a real possibility.
She nursed surprisingly well...even compared to Lilianne.
I really was shocked, but what can you do other than be full of joy (and hope) when you see her beautiful little self. They got me sticthed up (a few more then with Lilianne, but FAR less than Vivianne), and wheeled us to our room.
Well, we had a good first day. The genetic Doctor from our Children's Hospital was great with us, and he had very very nice things to say about Violet and how she is and what things she was doing...but realistic about what she is going to be all about.
But then the Jaundice started coming in. We expected that, but it sure been dragged on. We were in the hospital from Monday at about 12:30 to Friday at noon - that's a LONG time!
We have a lot of optimisim for Violet. I think the part I'm most concerned about is the two other girls. I don't want Violet and her extra chromosome to prevent us from giving them the things that we want to give them...things like seeing the world are the things I worry about the most "giving up." I am trying really hard to focus on the here and now and not the future...
I told my oldest daughter the day after we came home. I was worried about it, but she didn't care all that much. In her eyes, as she said tonight "Violette is perfect" and "Violette is a little blessing." It makes me sad to think that the world doesn't agree with her (and me, and Steve), and that she will at some point in her life hear ignorant, stupid or rude comments about a person we all love. The good thing is I've told her that people always notice the differences in people (like that she is the biggest in her class) and that some people are afraid of people who are different, but that all in all the differences in people are good and are what make the world an interesting place.
Our local hospital is OUTSTANDING and has a fantastic DS program. The Genetic MD said that they will make everything EASY for us when it comes to managing her health. They will tell us when and what to check for. Everything looks fatastic with her (I swear she is going to be the earliest of my kids to roll over). She seems like she has good muscle tone, she is very cute (looks like a tiny elf, but she's still not all fluffed up yet.) From our prenatal screens we know that all the usual markers for DS aren't there for her, so we hope that physically she continues to be a normal child! That was the advice the doctor told us...all you have to do right now is treat her like you did your other baby's. That's pretty easy because she's acting just like they did in every way.
My brother and SIL (who have a child with Muscular Dystrophy) came to the hospital and said that they did tell their kids that the baby has DS, and that they are around a number of DS kids at school that they are friends with (our school district is OUTSTANDING when it comes to special needs...talk about a blessing) and that wasn't an issue at all for them. The two boys were far more irritated that the girls outnumbered the boys in the family now.
I'm acutally feeling like we are going to have a wild ride at the our household. I really feel like I've got two kids who are going to be at entirely different ends of the spectrum. Vivianne is so crazy smart in very odd ways that make her difficult, and Violet is going to have issues that will make her difficult in different ways. Lilianne is going to be the social flirt of the world.
I'm very proud of my husband. He's been so great. They took Violet to get blood (from her head!) to test her genetic make up. They wanted to give her sugar water in a pacifier, and he wouldn't let them...he didn't want to screw up our chances breastfeeing!!! I'm determined to give this one breastmilk as long as I can - the extra IQ points will be well worth it just like they have been for my others! Not to mention the good the sucking will do for her speech and her inner ear formation!
I want to do what my brother and SIL have done, and make sure that her diagnosis is only one element of who she is and what our family is...not the THE element that defines us.
All I can say is so far, parenting a child with special needs is about the easiest and most natural thing I've ever done! Honestly, if this is the worst thing that ever happens to a child of mine, I am totally ahead of the game. I think of the myriad of other real heartbreaks we all have the possibility of facing as parents with each and every child, and really, this is easy...
I think you always on some level when you are pregnant or seen other parents with babies with "needs" and imagined yourself in that position - honestly, now that I'm in it, I'm finding it easier than I ever imagined. I look at her and everything - especially the love I feel for her, but everything else too - is easy.
Post by violettesmom on Jul 17, 2007 16:08:24 GMT -5
I recently became a mommy to a baby with DS (she's 3 weeks old today!) I have two other girls - one is 7 and one is 2.5. I'm learning as I go, and have found a lot of interesting information on this board.
I really liked the article in USA Today.
Not sure if any of you are fans of "The Office" or not. I've watched the entire show on my ipod passing the time pumping and breastfeeding the baby. This whole thread reminded me of one of my favorie episode, Gay Witch Hunt. If you haven't seen it, Michael (the self proclaimed "world's best boss") tells one of his workers "he's so gay." His HR guy tells him that that is a totally inappropriate thing to say to anyone, and that Oscar, the man he said was "so gay" actually was a homosexual. In a comment to the documentary crew, he says "I never would have said Oscar was so gay if I had known he actually was gay. That would be like calling a person who was retarded a "retard". You just don't do that."
Obviously, Michael shows his ignorance in so many ways in that statement...like so many in our culture. I thought it was a great way to call out how ignorant people can be...
Post by violettesmom on Sept 2, 2007 12:57:29 GMT -5
Just read it - it will make an excellent movie.
I thought it was very readable...I enjoyed it. As the mama of a child with DS, I really didn't get much out of it that helps me with my perspective on the world, but it is an enjoyable book and a good read! I read it in a day...
Post by violettesmom on Jul 19, 2007 15:07:52 GMT -5
I read the whole thing with a 2 week old baby with DS sitting on my lap...I cried a lot, wallowed in my feelings quite a bit, but really felt encouraged overall by the experiences of the women in the book!
Post by violettesmom on Jul 19, 2007 15:16:55 GMT -5
It's funny - I read this book before I had a child with DS. My opinion about the book hasn't changed since I read it. I thought there was some lovely writing, but overall it didn't do much for me. Parts of it seemed implausible to me (and it has been a while since I read it, but the part about the woman who take the baby being in the parking lot in the snow and meeting the love of her life?) I never found much to like about the father, and couldn't get much into the characters. But I read the whole thing. In retrospect, I think the aspects of inclusion and how the nurse pushed to find what the daughter needed were quite good.
That's just my take...interesting that the father figured out right away that the 2nd twin had DS. I'm amazed at how quickly doctors can identify the markers. I sit and look at my 3 week old and can find more similarities to my other kids than differences!
Post by violettesmom on Aug 7, 2007 9:52:13 GMT -5
Just wondering if hearing loss is such an issue with such a high percentage of DS kids why don't they just put them in early? It is as safe a procedure as there is - why wouldn't it be a preventative measure? From everything I've read, I'll probably push for it at the first sign of an ear infection...unless you guys can convince me otherwise...