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Post by faithhope on Mar 7, 2008 13:47:11 GMT -5
Hi it's me again, and I have been thinking about mothers like myself who's very first baby is the one who has Ds. Do you feel like it makes for a different experience than mothers who have had other typical children first? Also for those who have gone on to have others, was that pregnancy a scary one, thinking it might be Ds again? Have you actually been kind of traumatized about having another for fear that the baby may have something wrong, anything? Or did you have more of the mindset that you no longer feared anything, having given birth and loving a baby/child with Ds? As you all know my mind is constantly running, and since this baby is my first and I wanted him for so long, thinking I never would even have a baby just one year ago. So here is Noah and he has the one thing that sadly so many of us fear the most our baby will have. We definitely want other children and soon, but I wonder how I will feel with the next one ( I am not pregnant!!!). How will it affect the lives of any future siblings. I am sure it will be wonderful, hearing all the experiences you have all written about your children.
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Post by hannahph on Mar 7, 2008 13:56:05 GMT -5
Hannah was our first although we didn't find out prenataly. So the pregnancy itself was typical(at least as far as we knew)The first few months we were dealing with serious heart issues and surgery so by the time things calmed down from that I felt like I could deal with anything. I was ready to take the plunge again at about two years and ended up with an ectopic pregnancy and surgery and had worries about being able to concieve again. Fortunately two years after that we had our son Logan.I did have some concerns but not enough to make me want Hannah to be an only child. I was confident that even if we did have another child with issues we could handle it.As far as the pregnancy went I did have some testing done (a level 2 ultrasound and fetal echo) so I was pretty confident that all was ok. Still even when Logan was born I remember asking the midwife to look him over carefully to make sure she didn't see any signs of trisomy 21.Now Hannah is nine years old and Logan is five and I could not have planned it any better. They are the best of friends and I am pretty happy with where our lives are.
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Post by laurasnowbird on Mar 8, 2008 13:13:50 GMT -5
Ethan was my third, so I can't speak to the first child with a disaiblity question.
We had planned to have another child, before we knew Ethan had DS. I was very undecided about having another, because I was afraid that it would take the necessary time and attention away from Ethan. I didn't want him to get shortchanged, after all, he was here FIRST!!!
I really struggled with it, and finally decided to just leave it in God's hands. He didn't waste any time giving me an answer....I got pregnant the first month, and I was 42!
I'll be honest, I wasn't much worried about DS. We knew going into it that at my age, I was definitely in the zone, and that our odds of having another with DS was, I think, 1 in 60. Maybe that gives you an idea of how much less scary DS becomes later, LOL! And we were not prenatally diagnosed with Ethan, had no idea, and were devastated when Ethan was diagnosed. Now it's not a big deal! We love this kid to bits, and we'd have taken another just like him. We did no invasive prenatal testing with our littlest, Aidan, just the nuchal fold and maternal serum screening and ultrasounds. We knew we wouldn't terminate, even if the baby was another with DS, so for us it wasn't worth the risk to the baby to get an answer we were eventually going to get anyway.
Ethan was almost four when Aidan was born, and those two are the best of buddies! Aidan is two now, Ethan is six, and I'm amazed every day at how good Aidan has been for Ethan. Their big sis goes off to school every day, so in the mornings, its just the two boys (Ethan has afternoon kindergarten). Aidan loves his big sister, but he absolutely worships Ethan. It's "big brother" this, and "big brother" that, all day long. He waits in the window for his brother's bus, and tells me "hurry, hurry, big brother's coming" if I'm moving too slow, LOL!!!
It's been great for Ethan to have his little brother looking up to him, and it has helped me to stop babying Ethan a little bit (OK, maybe a lot, I'll admit it).
I remember so clearly when Ethan was born, his Down Syndrome seemed like such a huge thing, it was hard to see around it. It dominated our universe, and seemed to be central to every decision we made.
Now we're just a family, like any other, and we certainly don't think of ourselves as special. Every once in a while, when we are somewhere doing something with our kids, like once at the roller rink, I'll catch someone looking at me with a puzzled expression on their face, almost as if they are wondering how we can be acting so normal and enjoying our life so much when our son has DOWN SYNDROME, and it's all I can do not to laugh out loud.
I mean, really, its just our life. And it's a fantastic one, DS and all. Ethan is the most precious kid, and our life is so much richer and better cuz he's here.
I was lying with him in his bed the other night, singing his bedtime song, and he was so wiped out from playing in the snow that he was zonked out before I could finish it. I lay beside him in the glow of the night light cherishing that little face, wondering how I could ever had been frightened by him. But I was, terribly so, and it was just a necessary part of the journey, part of what I needed to experience to come to this magical place - so I'm grateful now for even those dark days because they led here, to this place of joy and contentment.
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Post by Emilysmom on Mar 8, 2008 18:29:54 GMT -5
Like Laura, Emily was our 3rd child...not our first. So, of course I don't know how it would be if my very first parenting experience had been with Em. We had always dreamed of having 4 children, but were told we would never be able to have kids. (Can we all say hmmmpphhh to that doctor??) We adopted our oldest son and then moved to TN, where we thought we'd get just one more opinion from the GYN. After months and months of temperature-taking and countless other "helpful" things, as well as Clomid, we were able to have Justin and Emily. After Emily's birth, we decided that we really ought to spend all our time and attention "working with" her. So, we stopped trying to get pregnant at all. No more temp taking, no more Clomid, etc. And when she was just a bit over a year old we were shocked to learn that I was pregnant with Jordan. I had plenty of fears, but mostly I was afraid that we would not be able to spend as much time with Emily (and the other kids) as we needed to, and it seemed so "unfair" to be bringing another baby into an already busy home. We were SO wrong about that one!!! Jordan has taught Emily more than all our "working with her" ever did! The two of them have been best buds and they have both taught each other wonderful things. I can't imagine Emily without all 3 of her brothers........but I think Jordan is a very special blessing for her.
We did have some prenatal testing........ I had CVS (chorionic villi sampling), and it really did help me to relax so much more during the rest of the pregnancy, and it would have allowed time for us to prepare a bit.....if Jordan had Ds or anything else. But, since that time I've heard stories of complications following testing, so that would be something to consider for sure.
Susan
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Post by Jessie on Mar 8, 2008 21:42:11 GMT -5
Jason is my husband's son from his first marriage (Jason just turned 15 yesterday) and I imagine it was a little scary for my husband when we got together knowing I wanted to have kids. It was quite a shock to them when Jason was born because they did not know prenataly the diagnosis.
The one thing we all wish? That Jason had siblings closer to his age. I think it would have helped him in his speech if he had been around kids closer to his age at home. Ellie is 2 and pretty much worships Jason at this point. She forces him to talk to her which has been a great thing. Jake, who is 1, already wants Jason to tickle him and make him laugh. I have a feeling that although there is a big age difference, they are going to grow up all best buddies.
Jessie
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Post by Kristin on Mar 8, 2008 21:46:07 GMT -5
Clarice was my first, and we didn't know ahead of time. Before we decided to go ahead and have another we discussed what we'd do if the second was pre-natally diagnosed with DS. (The answer was we already know that we can handle it, so it would be another adventure in our life journey.) I declined the AFP test, and we had a triple screen done. My second child is fine...in fact she's on the other end of the intellectual scale...gifted. She challenges us just as much as Clarice. She's in kindergarten and knows Clarice is different. It's interesting to hear her tell me last week that she wanted everyone to know that her sister was in special education, and that she was proud of it. I tried to gently tell her that not everyone will see things that way, but for now, I'm glad that she is proud. We have told Marcy that there may be times she will have to help Clarice stick up for herself and be a voice along with her. She replied, "no problem!" Although they attend different elementary schools, Clarice is bussed to Marcy's school daycare in the afternoon, and they share many friends.
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Post by laurasmom on Mar 9, 2008 0:16:38 GMT -5
Jessika
Laura is our oldest, our first born. I have actually been asked many of these questions before!
When it came to deciding to have another child, I really wasn't nervous, or scared about the chances of having another child with DS. Mike and I did opt to have an amniocentesis, and we had a wonderful genetic counselor that helped us throughout that process. We had made the decision to have the baby, no matter the results of the amnio. I remember my doctor commenting at the time that I seemed more anxious about finding out the sex of the baby. I need to emphasize how helpful our genetic counselor was, he was actually the geneticist, and he spent quite a bit of time with us after Laura was born, and then again when we were deciding about the amnio. I do have to give him a lot of credit for my lack of nervousness.
As for the first baby having DS making it a different experience, I really don't think so. Now remember, I am looking back 16 years, but I had several friends who had babies around the same time. Looking back, I can see how they helped me by being totally accepting of Laura as a baby, not a DS baby. A couple of my friends asked me for things to read about DS, because they wanted to understand, and help as they could.
Now, there have been times, as my girls have grown to the ages of 16 and 12, that I have wondered what it would be like if they were reversed, and my daughter with DS was younger. I have thought it would be nice for Laura to have an older sister, someone for her to turn to for the sisterly things.
I so understand what you mean when you say your mind is constantly running. I remember when Laura was born, I told one of my friends I was worried what it would be like when she started school. My friend was great, and she did help me come to the understanding that I couldn't worry about what would happen 5 or 6 years later.
I hope everything is going well..... Sharon
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Post by meghans_mom on Mar 9, 2008 8:38:44 GMT -5
Meghan was our first, and in many ways it was a blessing...I didn't have to relearn any "bad habits" (not that they're technically bad habits) that wouldn't be as beneficial to Meghan (not carrying her on my hip, for example) -- and, I was able to immerse myself in her world and become involved in her therapies without having to worry about where another child was, etc at the time.
Once Meghan was about at the walking stage, we decided to try for baby #2 (actually a little before - because she took her first steps the same week I found out i was PG with baby #2)
I didn't fear having a second child w/ DS so much - since Meghan has regular old DS, vs translocation, I knew the odds were in our favor.
I did worry a lot about something else being wrong but my pregnancies were not wrought with all worry....BUT i am a worrier....so whether or not MM had been born with DS, I probably would have worried. And I always wanted atleast 2 kids, so my anxieties were not strong enough to deter me (us)....actually I had no anxieties thinking about it beforehand...only once I was actually pg.
I am currently PG with baby #3. I did have prenatal testing (on this and my PG with my last child) by choice, but simply because I wanted to settle my mind some - and again, I wasn't thinking DS -- but wanted to see if anything else showed up - AND it wasn't because I was looking at termination, it was simply to give the worrier in me some peace of mind.
Looking back, I'd say my pregnancy w/ MM was the most difficult b/c she was diagnosed in utero, and I did not share this information with many people, outside of close family. So I worked with about 100 women in a nursing home and had to hear every day ...oh no morning sickness, YOURE SO LUCKY!! You haven't gained much weight, YOURE SO LUCKY.... on and on and every day... and, at the time -- I didn't feel very lucky at all.
But now I know differently!!
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Post by dannysmom on Mar 9, 2008 9:25:30 GMT -5
This is a great topic and one that I have thought alot about myself. For me, my son was my 2nd child...and we didn't know prenatally. I agree, that the birth order of our children does change the experience as welll as if you find our prenatally or not. I am a firm believer in God is in control and our experiences shape who we are. For us, having a typically developing daughter meant that I knew what typical development was first hand. I did alot of comparing and reading my daughters baby book. I soon realized that doing that was VERY unhealthy and it wasn't fair to Daniel to compare him to his older sister.....because he is who he is.....and she is her own unique self. As for how I feel about more children........I know both ways. I've had a typical child as well as a child with Ds. I'll be honest in saying I don't know what we are going to do. My husband REALLY wants another child....and so do I. But that fear inside me (not necessarly Ds...but any of the other million things that can happen) is still there. Odds don't matter to us any longer.....I don't think any of were told (prior to any testing we might have done) "oh, you have a GREAT chance to have a child with Ds". We were all in the minority no matter how high our odds were. And as much as our kids are blessings.....I do understand when you say....we were given the news that so many people fear. I love my son more than life itself....but yes, he has many challenges that I wish he didn't have to face. However, I also realize he has many blessings as well. Our experience shape who we are....and for us, I can see benefits for both experiences. For moms who children with Ds comes first......this is all you know for the moment. Not having that older sibling to compare (even though we aren'' supposed to compare, we are all human and we all do it from time to time) can make for an easier experience. And on the flip side, having your child with Ds be the younger sibling means you got to experience typical development and also being a mom already means you know how to take care of a baby already. I remember in Daniel's early days being very grateful for already being a mother and at least knowing how to change diapers and make the bottles and how to feed him etc. The way I look at it....hey we can't change it. Take the best you can out of your unique experience and enjoy it . I haven't gone on to have another child after my child with Ds....and I'm sort of envious of those moms who do. If I never have any more children.....My Daniel will never know what it's like to be a big brother, and my daughter will never know what it's like to have a typical sibling. I'm going to have to give this more thought today. Maybe I do need to starting working on a sibling for Daniel
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Post by Chris too on Mar 9, 2008 15:52:11 GMT -5
Maybe I do need to starting working on a sibling for Daniel Have fun with that
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Post by Myria on Mar 9, 2008 17:50:33 GMT -5
LOL Chris, you're funny.. To answer your question Jess, Ayden is my second child, but 12 years separate him from his sister. It has been so long, I can't even remember to compare their milestones I have often thought about having another baby, of course there is the fear of "what-if", but I think that if we do get pregnant again, I will opt for not getting any testing, I don't even want to know the baby's sex. We probably won't try again for a couple more years, but before I turn 35. (You know, I have a higher chance of having a baby with Ds then) LOL, seriously I really would love for Ayden to have a sibling close to his own age, so who knows, maybe someday..
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Post by tchamness on Mar 9, 2008 18:14:28 GMT -5
I found that the best thing about having your first child have DS, it that you don't compare then to older siblings. We understood that Lexi would probably do things later then children her age, but we didn't worry. It wasn't until my second child (non ds) that we realize how late she did things. If I had Lexi second or even third I would have compared her to her sisters, and even knowing she would do things slower, I think I would have worried more.
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Post by Chris on Mar 9, 2008 18:52:45 GMT -5
Sarah is my second child. My girls are 11 years apart. The advantage of already having a child before Sarah was I appreciate all the things that are easier with her than with my first child.
I was 43 when Sarah was born so we never even considered having more children. At least my husband was positive he didn't want to go through another pregnancy so he had a vasectomy when Sarah was 11 days old. I think it would have been wonderful for Sarah and our family if she had a younger sibling.
If I had become pregnant again, I would have opted for prenatal testing again because I just hate surprises. No matter what the outcome, I would never terminate a pregnancy. I am so grateful that we knew fairly early on in my pregnancy that Sarah would have Ds. We were shocked to find out we were pregnant to begin with and I think that also made the diagnosis easier to accept. I always felt that God blessed us with Sarah and He created her with Ds.
Chris
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Post by Monique on Mar 10, 2008 19:31:53 GMT -5
HI! I have been lurking reading your posts and i had so many of the same feelings you had so know that you are not alone! My son was our first born and with DS. Normal pregnancy, no warning. He had heart surger at 5 mos etc. Even still, when he was 9 mos old we decided to try and have our second. I was 34 when i had him and we always wanted at least 3 kids. First try we got pregnant again. Boy i remember lugging my son around to all his therapies with my big belly and then bring his little sister to all of his therapies after she was born. Then 24 months after my 2nd was born we had our third child (another girl). At one point i had 3 kids in diapers (yikes). I had amnio's with the girls because i wanted no surprises the next time around. Some people (like my mother) thought it wasnt a good idea to have more kids since my son needed so much but he also needed a family too. I just didnt think that there was any reason to alter our family planning because we had a son with special needs. And for some reason, i just didnt think lightening would strike twice. The only difference between all my children being born was that with my 2nd child we could truly enjoy the birth because with our first no one knew he had DS and the delivery was all chaotic and scary and sad because our baby wasnt "normal". I so looked forward to what they experience was going to be to enjoy the moment of holding my new baby and she was alright. I wanted that experience so much because i felt we were robbed the first time of that. So anyone who has 3 kids in 4 years will tell you its hard with so many little ones. But they are all getting bigger now, they all are different and fabulous in their own way and i am so lucky to have such diversity between the 3 of them. My 2nd daughter is just beginning to understand the difference in her brother and i am starting to get the questions, but i can tell she is always watching over him. If you wanted to have more children before, I say there is no reason to change that now. It only adds to your life and your babies. I would have another but i am 42 and exhausted so i think we are done! Oh yeah, one more thing. I also wanted another baby because DS was just becoming so much a main part of our life that have another child help to balance out the attention focused on our son so much. Puleasse, otherwise he would be even more spoiled than he is already Monique
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Post by Renee' on Mar 10, 2008 21:26:58 GMT -5
I had to giggle about this. Lauren is our 1st. We were both 28 and I knew before she was born at 22 weeks she would have DS. My husband and I were CLUELESS when it came to babies and especially one with special needs.
We have 2 other girls now and we laugh because we don't know what "normal" is. We always look at our other two and wonder when they should be advancing. With Lauren we put a lot into her as a baby.
When I was pregnant it crossed my mind our other 3(I lost a pregnancy in 06) would have DS. I just told myself I would really be an expert if that was the case. With our last they thought she had DS because she failed the Nucal neck thing. I had an amnio and she was fine. However it wouldn't have mattered. I love them all and they are all unique.
Oh, I just wanted to add that Lauren's sisters are NUTS about her. They are so lovely together. I didn't have a sister so I watch them and really enjoy the bond they have.
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