Down Syndrome Awareness Month

[nicanmatt]

Anyone here have a child with DS? My daughter has it, and now that she is 1 I feel like I should be all "DS MONTH-WAHOO!" But I don't honestly know if most of my FB friends even know she has DS. Are you doing anything special to create awareness or buzz for DS support? I wonder if I should be doing my part to encourage others to learn more, but I feel like I still have a lot to learn!

[jessnpaul]

A friend I met in the NICU had twins... one with DS, one without. They're now almost 2.5 (they were born the same day as my son). She has been promoting DS Awareness by posting a Q&A status on FB where people can ask any and all questions about DS, which I think is pretty cool!

[NandaB]

Hi! look at your cutie! I am currently pregnant and my baby has a confirmed diagnosis of Ds. We haven't told anyone besides our parents yet, and I am thinking I should take advantage of it being Ds awareness month to post something on FB (after emailing our close friends and family to let them know) I want to get it out of the way so to speak, because I would rather people know than wondering if I haven't said anything because I am ashamed or embarrassed.

eta: If I do post anything it would be a badge of some type with a link to a website or something

[ohgillian]

Oct 2, 2014 15:01:08 GMT -5 nicanmatt said:

Anyone here have a child with DS? My daughter has it, and now that she is 1 I feel like I should be all "DS MONTH-WAHOO!" But I don't honestly know if most of my FB friends even know she has DS. Are you doing anything special to create awareness or buzz for DS support? I wonder if I should be doing my part to encourage others to learn more, but I feel like I still have a lot to learn!

My daughter has a rare genetic disorder and there's an awareness day in September. I didn't do anything. People already know she's different, I really still feel so raw about it all that I'm not ready to be some big advocate. I'm not saying other people shouldn't; I'm just not there yet.

[KaraOrNot]

My son has DS. He was just born, so I haven't really given DS support much thought, but I saw the post and wanted to say hi.

[nicanmatt]

Oct 16, 2014 17:42:00 GMT -5 NandaB said:

Hi! look at your cutie! I am currently pregnant and my baby has a confirmed diagnosis of Ds. We haven't told anyone besides our parents yet, and I am thinking I should take advantage of it being Ds awareness month to post something on FB (after emailing our close friends and family to let them know) I want to get it out of the way so to speak, because I would rather people know than wondering if I haven't said anything because I am ashamed or embarrassed.

eta: If I do post anything it would be a badge of some type with a link to a website or something

Hi!
I practically forgot about this post until I was quoted above. CONGRATULATIONS on your baby!!!!!!! Do you know if it's a boy or a girl? Please let me know if you have any questions or concerns. I was fortunate to have a second cousin with DS, so my cousins were excellent sources of information and support. Feel free to PM me any time. DD is 15 months and we have been through open heart surgery and she has several therapists through the Birth-3 program in my state.

I hope you are feeling well! Have you checked out Happy Soul Project? I love her blog, Pip is so adorable and I love how her mom is advocating and promoting that "different is beautiful".

[nicanmatt]

Oct 21, 2014 14:06:29 GMT -5 KaraOrNot said:

My son has DS. He was just born, so I haven't really given DS support much thought, but I saw the post and wanted to say hi.

Congratulations!!!! How is he doing? How are you doing?? Do you have any pictures? I'd love to see your little peanut!

[ohgillian]

Oct 21, 2014 14:06:29 GMT -5 KaraOrNot said:

My son has DS. He was just born, so I haven't really given DS support much thought, but I saw the post and wanted to say hi.

Congrats on your son's birth! Yay for new babies. 

[KaraOrNot]

Oct 21, 2014 14:08:53 GMT -5 nicanmatt said:

Oct 21, 2014 14:06:29 GMT -5 KaraOrNot said:

My son has DS. He was just born, so I haven't really given DS support much thought, but I saw the post and wanted to say hi.

Congratulations!!!! How is he doing? How are you doing?? Do you have any pictures? I'd love to see your little peanut!

Thank you! He spent a couple of weeks in the NICU to work on feeding, but he has been home for a week and is doing really good! He will have to have heart surgery in the next few months, which I see your little one has also been through

I am doing so much better now that he is home!

And a pic!

[nicanmatt]

Oh he is precious!!!! What a cutie-pie!!! I'm SO glad you are all home now. We were in the NICU for jaundice and it SUCKED SUCKED SUCKED. We actually got released and had to go back. That was a total mind-fuck.

He is seriously so cute. I want to snuggle and squish him!! And give you a great big hug too. Do you have a lot of family and friends nearby? Feel free to PM me if you want to chat. It's nice to meet someone going on this journey too.

Congratulations!

[NandaB]

Oct 21, 2014 14:15:59 GMT -5 KaraOrNot said:

Oct 21, 2014 14:08:53 GMT -5 nicanmatt said:

Congratulations!!!! How is he doing? How are you doing?? Do you have any pictures? I'd love to see your little peanut!

Thank you! He spent a couple of weeks in the NICU to work on feeding, but he has been home for a week and is doing really good! He will have to have heart surgery in the next few months, which I see your little one has also been through

I am doing so much better now that he is home!

And a pic!

Omg, look at that sweet face!!!

nicanmatt we are waiting to find out the baby's sex. We still wanted something to be a surprise, and being team green was so much fun with #2. Thank you for your post, we read everything we could find when we first found out, and now we are kinda coasting waiting for baby. Honestly I'm not sure if it has sunk in yet. Luckily baby's heart looks good on the ultrasound (we have to go every month) so we are hoping that we have dodged that bullet. Thanks for the blog rec. I always appreciate reading about real peoples stories. I'm reading a great book now, Gifts, that is all short essays of parents with young children with Ds. Its positive but not overly sugery/fake.

[KaraOrNot]

Oct 21, 2014 14:29:16 GMT -5 nicanmatt said:

Oh he is precious!!!! What a cutie-pie!!! I'm SO glad you are all home now. We were in the NICU for jaundice and it SUCKED SUCKED SUCKED. We actually got released and had to go back. That was a total mind-fuck.

He is seriously so cute. I want to snuggle and squish him!! And give you a great big hug too. Do you have a lot of family and friends nearby? Feel free to PM me if you want to chat. It's nice to meet someone going on this journey too.

Congratulations!

I spent a good part of the day snuggling and squishing him!  I just hopped on my computer and can see your sig pic.  Your DD is a cutie too!   

We are very lucky that our families live close by.  In fact, my mom will actually be looking after him when I go back to work, which is awesome!

I just checked out the blog you mentioned above and I really liked it.  Thanks for sharing. 

Oct 21, 2014 16:06:16 GMT -5 NandaB said:

Oct 21, 2014 14:15:59 GMT -5 KaraOrNot said:

Thank you! He spent a couple of weeks in the NICU to work on feeding, but he has been home for a week and is doing really good! He will have to have heart surgery in the next few months, which I see your little one has also been through

I am doing so much better now that he is home!

And a pic!

Omg, look at that sweet face!!!

nicanmatt we are waiting to find out the baby's sex. We still wanted something to be a surprise, and being team green was so much fun with #2. Thank you for your post, we read everything we could find when we first found out, and now we are kinda coasting waiting for baby. Honestly I'm not sure if it has sunk in yet. Luckily baby's heart looks good on the ultrasound (we have to go every month) so we are hoping that we have dodged that bullet. Thanks for the blog rec. I always appreciate reading about real peoples stories. I'm reading a great book now, Gifts, that is all short essays of parents with young children with Ds. Its positive but not overly sugery/fake.

We were team green too.  So much fun! 

We found out that he had DS only a few weeks before he was born.  It was so overwhelming and I agree that I am still not sure that it has entirely sunk in yet. 

I have that book too, but haven't read it yet. I had started another book about DS first, but the first few chapters were way too much for me (here is everything under the sun that can possibly go wrong w/ a kid w/ DS), so I haven't been too edger to start another one.  Maybe I will give it a shot!

[NandaB]

KaraOrNot you should totally read it. They are sweet, but "real life stories from moms and a few dads with really varied lives and experiences. There is a short bio (like, a few sentences) about each author at the end of their essay which mentions any organizations/websites/etc related to Ds they are a part of.