new to board, son with DS — The Bump
Special Needs

new to board, son with DS

Hi,

I've been lurking for about 2 months.  My second son, Riley, was born w/ Down Syndrome.  We had no idea, and was completely taken by surprise by his diagnosis.  As you know, we've been crazy busy since his birth w/ various doctor's appointments, and learning how we can be the best parents to Riley, and to our 20 month old son, Austin. 

People keep telling me what a blessing Riley will be for us, but I am not quite there. I love my son, but I don't love the Down Syndrome...which may sound like a stupid statement, but I guess that's just where I am.  We are very lucky that he is overall helathy, and has had no major surgeries etc...

I guess this post is just about introducing my family, and venting a little.  I still get very emotional at silly little things, and am having tons of mom guilt about irrational things in Riley's life.  I am trying really hard to just be happy, but it is so difficult sometimes.  I keep looking into the future and wondering if I will ever not be sad.  I know it will happen, but it seems so far off. 

 Thanks for listening!

Jen

Re: new to board, son with DS

  • Welcome and congrats on your new little boy. My son Caleb also has Downs and it was a TOTAL shock to us as well. I cried A LOT the first month or so but you have to be strong for your boy.

    Try not to think too far ahead. Dont think "oh he'll never do this, he'll never do that" because, really, how do you know? Caleb has shocked EVERYONE with his capabilities. He is more like a typical kid than not.
    Take it one day at a time.

    I never really said I hate "Down Syndrome", Never thought of it that way. To me, its who my son is and he wouldnt be Caleb without it! I did do the blame game though even though the geneticist said it had nothing to do with us. I kept thinking, "what did we do wrong" or "what did we do to deserve this" or "why us?".. but you know what, why not us? I like to think that Caleb picked us to be his family b/c he knew we could handle it. Yeah sometimes its a lot of work and can be frustrating but theres no reason why you all cant live a normal life.Whatever that may be, to you it WILL be normal!

    Please feel free to email me at jessica at mysandford dot com if you want to chat further.. 

    again Congrats and one day at a time! It WILL get better!! 

    Oh and if you have a chance, pick up the book "Gifts".. it was so nice to read so many stories that were encouraging and we could relate to.

     

  • Welcome! My DD has Down syndrome. We knew before she was born though. I remember getting the call with our amnio results then hanging up the phone and saying F**K! Then I broke down and continued to do so for several days. I guess I was at an advantage somewhat b/c we knew there was a possiblity so we had time to prepare ourselves for the diagnosis.

    What you are feeling is NORMAL! I still get down about it, but not much. It will all come together. I would suggest reading a book called Roadmap to Holland. The lady that wrote it has twins and one has Ds. I think you would be able to relate to her, b/c she felt like you do.

    Good luck with everything. There are a few of us here with kids with Ds, so feel free to ask and vent away. Oh and Congratulations!!

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  • I'm just curious, did you guys do any testing? That would be such a huge shock to find out at the birth. 
  • *HUGS*

    My son, Miles, was born with Down syndrome in April and we were surprised at birth too. To say it's a life-changing experience is an understatement.

    I'm so happy to hear your DS has no major health problems. We are blessed in that Miles hasn't either. Trust me. It will take some time, but you will be happy again and you will find your son to be one of the greatest joys in your life.

    DM me if you'd ever like to talk more, and congratulations on your baby boy. :) 

    image
    Nora Judith 7/2/06 Miles Chauncey 4/20/09 born with Trisomy 21 - Down syndrome
  • And ditto the book "Gifts." It helped me a lot.
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    Nora Judith 7/2/06 Miles Chauncey 4/20/09 born with Trisomy 21 - Down syndrome
  • image Skruffy:
    I'm just curious, did you guys do any testing? That would be such a huge shock to find out at the birth. 

    I'm sorry, but I hate this question so much and had to answer it CONSTANTLY after Miles' birth. NOTHING was found on our ultrasound to make us think anything was amiss, so NO, we didn't do any testing. It almost made me feel like people were BLAMING me for not knowing and, hence, not "doing something about it" beforehand. Like, how could you NOT know?? So, so very irritating. And hurtful.

    image
    Nora Judith 7/2/06 Miles Chauncey 4/20/09 born with Trisomy 21 - Down syndrome
  • DD does not have Downs, but does have a genetic translocation and c-acc.  I think every parent of a SN kid goes through the same emotions you and your husband have experienced.  There are still times when I get upset about it, but then I realize that there is nothing I can do to change it.  What I can do is bust my tail to be the best mom I can and to provide DD with every opportunity to grow and develop.  We have a laundry list of specialists and therapists that she sees and sometimes it gets overwhelming.  But again, she is making such great progress and is defying some of the odds that it motivates me to try even harder.  I hope you find this board to be supportive and maybe you can find a support group in your area.  I know it has helped me to connect with a few other moms of kids with acc.

  • image cooker71:

    image Skruffy:
    I'm just curious, did you guys do any testing? That would be such a huge shock to find out at the birth. 

    I'm sorry, but I hate this question so much and had to answer it CONSTANTLY after Miles' birth. NOTHING was found on our ultrasound to make us think anything was amiss, so NO, we didn't do any testing. It almost made me feel like people were BLAMING me for not knowing and, hence, not "doing something about it" beforehand. Like, how could you NOT know?? So, so very irritating. And hurtful.

    I can understand how upsetting it can be.  We did not do any genetic testing with DD, and to be honest, the geneticist we have seen since told us that her translocation probably wouldn't have been detected then anyhow.  We did know something was "wrong" after a growth ultrasound around 32 weeks.  Even if we had known earlier, it wouldn't have made a difference.  If we have another child, I don't know if I will test or not.

  • image cooker71:

    image Skruffy:
    I'm just curious, did you guys do any testing? That would be such a huge shock to find out at the birth. 

    I'm sorry, but I hate this question so much and had to answer it CONSTANTLY after Miles' birth. NOTHING was found on our ultrasound to make us think anything was amiss, so NO, we didn't do any testing. It almost made me feel like people were BLAMING me for not knowing and, hence, not "doing something about it" beforehand. Like, how could you NOT know?? So, so very irritating. And hurtful.

    I appreciate knowing how that question makes people feel. I didn't know it came across that way. I had a daughter who was born with some congenital heart defects that weren't caught before hand even with testing so it was a shocker to us because we were told she was 100% healthy. 

  • image Skruffy:
    image cooker71:

    image Skruffy:
    I'm just curious, did you guys do any testing? That would be such a huge shock to find out at the birth. 

    I'm sorry, but I hate this question so much and had to answer it CONSTANTLY after Miles' birth. NOTHING was found on our ultrasound to make us think anything was amiss, so NO, we didn't do any testing. It almost made me feel like people were BLAMING me for not knowing and, hence, not "doing something about it" beforehand. Like, how could you NOT know?? So, so very irritating. And hurtful.

    I appreciate knowing how that question makes people feel. I didn't know it came across that way. I had a daughter who was born with some congenital heart defects that weren't caught before hand even with testing so it was a shocker to us because we were told she was 100% healthy. 

    I'm sorry. That came across as very rude, and I truly didn't mean it to be a personal attack on you. It's a sensitive topic for me, as you can tell, and I'm still healing. I apologize.

    image
    Nora Judith 7/2/06 Miles Chauncey 4/20/09 born with Trisomy 21 - Down syndrome
  • Thanks for all your comments.  No we didn't do any testing.....honestly, I don't know what is worse:

    a:  knowing during pregnancy and risking not enjoying your pregnancy

    b: finding out right after birth.

    Either way, it really sucks, sorry bad choice of words, to find out that your child has a major disability.  I am asked constantly if we knew before hand, and it does make me frustrated...but I can't say that I wouldn't ask the same question had I not been put in this situation myself. 

  • Thank you everyone for your words of encouragement.  As you know, this is a tough pill to swollow, and support form anyone is much appreciated.  I do intend to do some of the recommended reading in your posts, but I honestly just get overwhelmed by it right now.....some day, soon I hope, I'll snap out of it, and function like a normal human again....I know, there is no "normal"!

     Thanks again!

  • image jptimestwo:

    Thank you everyone for your words of encouragement.  As you know, this is a tough pill to swollow, and support form anyone is much appreciated.  I do intend to do some of the recommended reading in your posts, but I honestly just get overwhelmed by it right now.....some day, soon I hope, I'll snap out of it, and function like a normal human again....I know, there is no "normal"!

     Thanks again!

    you will function again, I promise!! I have said it before but I will say it again. I wish I could go back and tell myself just how OK things are going to be.. this isnt the end, its just the beginning!!

    Best of luck to you and your family! and if it makes you feel any better right now my 2 year old is giving me his best smile to get a cookie out of me... TYPICAL 2 year old!! you'll see!!!

  • HUGS to you!!! I too have a 7 mo old who was born with DS and it was a shock! My DH & I are both 29.... needless to say, no we didn't get testing and yes, I hate that question too.

    My sweet boy did have a ton of medical issues and was in the ICU for the first 10 weeks of his life before we could bring him home with a feeding tube and head to toe brace for hip dislocation. He's doing great now (no more feeding tube and brace is off) but you know what helped me??? It could always be worse. I look around and see other children with various disabilities/cancers/etc and realize it could ALWAYS be worse. In fact, at some point I think you and I will both realize that not only is it "not that bad" but it's actually "pretty darn good" having a child with DS.  But hey - I'm not there yet either, so we'll grow together! :)

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    [/ look around and see other children with various disabilities/cancers/etc and realize it could ALWAYS be worse. In fact, at some point I think you and I will both realize that not only is it "not that bad" but it's actually "pretty darn good" having a child with DS.  But hey - I'm not there yet either, so we'll grow together! :)]

    I feel this way too...especially when we are at specialist appt's.....the Children's Hospital sure does put some things into perspective!  Good luck to you.....

  • Would it be weird to say that I am actually jealous of you moms that have kids with DS?

    I mean, there is so much support, community and resources for those with DS. In fact I was lamenting today at Barnes & Noble how in the Special Needs book section there were over 15 books about raising a child with DS and not one about how to deal with caring for a child with a rare and unknown genetic condition.

    I wish I could just have some idea of what the future will hold for me and my DD. But I have no one to compare to, no one who has "been there". I know you are in shock and need to grieve but all of you who have a child with DS at least have each other.

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  • ds #1 has Down syndrome.  it took me a year to grieve the loss of a "typical" child....what you're feeling is so normal!! you'll get over it soon enough and laugh at how worried you were for nothing!
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  • image amajane:

    Would it be weird to say that I am actually jealous of you moms that have kids with DS?

    I mean, there is so much support, community and resources for those with DS. In fact I was lamenting today at Barnes & Noble how in the Special Needs book section there were over 15 books about raising a child with DS and not one about how to deal with caring for a child with a rare and unknown genetic condition.

    I wish I could just have some idea of what the future will hold for me and my DD. But I have no one to compare to, no one who has "been there". I know you are in shock and need to grieve but all of you who have a child with DS at least have each other.

    amajane:  I do feel "lucky" at times with the support available for children and familes living with Down Syndrome. I see other kids and parents dealing with things far worse, and my heart breaks.  I wish you the best of luck and happiness for you and your family.

  • image amajane:

    Would it be weird to say that I am actually jealous of you moms that have kids with DS?

    I mean, there is so much support, community and resources for those with DS. In fact I was lamenting today at Barnes & Noble how in the Special Needs book section there were over 15 books about raising a child with DS and not one about how to deal with caring for a child with a rare and unknown genetic condition.

    I wish I could just have some idea of what the future will hold for me and my DD. But I have no one to compare to, no one who has "been there". I know you are in shock and need to grieve but all of you who have a child with DS at least have each other.

    Thank you for this perspective. It would be so hard not to know what's wrong with your child and/or what to expect of their future.

    image
    Nora Judith 7/2/06 Miles Chauncey 4/20/09 born with Trisomy 21 - Down syndrome
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