Comments on our perfectly imperfect life: reflection... six years later.

imeant to say enjoy ur pregnancy ..remember there ...

2012-03-01T03:12:50.789-05:00

imeant to say enjoy ur pregnancy ..remember there is a huge community of families out ther with a child/adult who has DS...you are never alone .yvettes aunts,uncles and all my friends love her to bits ..i am on fb and found you through another mum in my network of mums from around the worls..love and hugs from across the pond ..

dear annoymous,my daughter yvette is 32years old a...

2012-03-01T03:06:59.590-05:00

dear annoymous,my daughter yvette is 32years old and has DS..i didnt find out until she was 5months old..was i disappointed ? yes i was . was i scared of the unknown? yes i was .i had a very traumatic pregnancy and lost yvettes twin about half way through .after i found out about yvette having DS i went into a period of why me ,how will i cope..what will her life be like..yvette isnt as you have said high functioning but she is a very happy young lady and we do all the normal things together going out for meals,going to parties,going to the pub fora drink,taking the dog for a walk etc ect...ok she has never been able to work,read ot write but she has a memory span that i would be proud to have...now the big question to abort or not .imo no you should go ahead with the pregnancy..why you may ask..if you dont you wtll never know the neverending love and pleasure your baby will bring to you..

You can do it. I was in your shoes... I really was...

2012-03-01T01:07:28.405-05:00

You can do it. I was in your shoes... I really was... and 3 years later I am ashamed that I ever considered abortion or adoption. The Medical community is crap. I did not think I could do it. And now my beautiful, vibrant, intelligent, playful and stubborn Gabriel is the best thing I have ever done. Every one absolutely loves him as everyone in your life and who will come into your life will love this baby of yours. It's not a joke... honest. It's a blessing... that baby will teach you so much about life it will amaze you. And your daughters will love this baby fiercely. Trust your mother's heart... not your head. YOU CAN DO THIS... I promise.

LOL! How is that for not saying much... :)

2012-02-29T22:14:50.957-05:00

LOL! How is that for not saying much... :)

Hi Nicole- I did not reply earlier because I did ...

2012-02-29T22:13:47.858-05:00

Hi Nicole- I did not reply earlier because I did not feel that I could add more. I will say that I have a son with DS. A lot of people describe their children with DS as "the light of their life". It is amazing how many people spontaneously say that! It is so true. I hope that you get to feel that wonderful life warming love! You and your family will be changed forever in a very positive way! I promise! I did not know that my son had down syndrome until he was born. He was born on a holiday. A nurse at the hospital told me that I must be special because God only gives these babies to special people. I probably gave her the ugliest look I could conjure up! It took 7 days to get the results. I cried before I got them - I knew in my heart. I cried and cried and cried for weeks when I found out. My SIL called me and asked me if I was ok? I said "no!" and hung up! Then I did research. I came upon the poem "Welcome to Holland" (glad you read that) and then I read that babies with DS are just babies. I started to feel better. Then one of my friends arranged a meeting with me and a mom and her son with down syndrome. He was so dang cute and loving and fun. He just made my day! Then I cried because I felt so bad about crying... Now I cry because I am so proud of my son! He is amazing! When he hits a milesotne, WOW! So much more special! We celebrate him! He just turned 4 years old. He works so hard. We started therapy at 6 weeks. I am not mother of the year, but he teaches me. I have learned how to love deeper and he teaches me patience. It is amazing! This is such an amazing journey. I hope you join us! You won't regret it. I know how you feel now, but I promise you will not regret it! I am not saying that it is easy. It is not, but so worth it!

On another note, my sister lives in MN. I know through her that there are services you can recieve through the state. It typically does not matter what your financial status is, because your baby has DS, you qualify. You will get the help you need! Please feel free to email me or find me on facebook! I pray for you to make the decision you feel in your heart. Jamie Rogers (Imjme4@gmail.com)

Hi, there, My daughter, youngest of 6 kids has Dow...

2012-02-29T20:37:30.071-05:00

Hi, there, My daughter, youngest of 6 kids has Down Sydrome, she has had her trials, medically, thers always a chance there will be issues with any child. I heard a quote a few times and I immediately thought of it when I read your story. It is simply " I never knew I wanted a child with Down Syndrome until I had one" welcome to holland Anon, it's going to be an amazing beautifully life, I think you know what you want to do, Bethany can connect you to a wonderfull huge worl on FB of support. :)

OH tears running down my face to read your post Ni...

2012-02-29T19:13:03.706-05:00

OH tears running down my face to read your post Nicole!! As Bethany and so many others have shared, our community is nothing short of amazing and strong....we are mommas that are fearless for each other and our kiddos. There's nothing that none of us won't do for one another...so that is the reason for so many people responding to your need for advice. As I said in my comment above somewhere (LOL!), I have never heard any mom ever regret having and keeping their child...everyone always says how much of a blessing their child is to them and their families...

Once you find out for sure, and even if the test is negative, join FB if you haven't already, and you will be scooped up by hundreds of women (and some dads too) to help you in any way possible and join you on your wonderful journey! You may feel like you are alone now, but there is a cyber community that will become like family...it's a wonderful thing and a privilege to be part of it! Any questions you may have will be answered in seconds...it's better than having a doctor on speed dial! And we all love looking at photos of our kids...and reading about all the milestones. So we're ready when and if you are...

I'll be praying for you!

Oh Nicole, I'm SO HAPPY to read this!!! You w...

2012-02-29T18:47:26.795-05:00

Oh Nicole, I'm SO HAPPY to read this!!! You will be a wonderful mother to this baby...just as you already are to your other two girls! If you have a facebook, add me: Holly Guillory Fedele. I have a blog as well, but it is new and has very little in it. Still contact the local society because they may have smaller chapters near you or at least can put you in touch with a family near you.

I'm in Duluth, so Hibbing is about 80 miles no...

2012-02-29T16:10:11.063-05:00

I'm in Duluth, so Hibbing is about 80 miles north of me :)

And I'm so happy you can feel the love. This c...

2012-02-29T15:11:22.399-05:00

And I'm so happy you can feel the love. This community is amazing and mighty. ;)

How far are you from Hibbing? I have a friend ther...

2012-02-29T15:09:39.696-05:00

How far are you from Hibbing? I have a friend there that has a child with DS.

Nicole, you are so right about feeling alone, but ...

2012-02-29T13:39:23.625-05:00

Nicole, you are so right about feeling alone, but there are truly some amazing families that are so willing to share their experiences with you. I found Downsyn.com after my Avery was born with DS and this group (Bethany and many more of these women that responded so far to your posts) really helped me to deal with my thoughts and feelings. I am forever grateful to them for the love and support and now I have started my own support group in my area and I am happy to lend a helping hand to my extended family in their journey. I do have to say one more thing about siblings...I was fearful that this was a heavy load on my oldest daughter and it turns out that having a sister with DS gave her so many things:patience, strength, understanding, acceptance, and a voice. She is Avery's biggest advocate and she loves her little sister dearly. Avery has enriched all of our lives and while I still have the "what-ifs" once in a while it is quickly squelched by all the love and compassion that we have all gained by living with our little sweetheart! So happy to hear that today is a better day for you. It does get better and easier as time passes. Until one day you get ready for bed and realize that you didn't even think about DS that day...it really does happen! Good luck to you!

Nicole - I fell upon this blog today, and I am so ...

2012-02-29T13:27:44.308-05:00

Nicole - I fell upon this blog today, and I am so glad I did. I was in your shoes a little over 2 years ago. We were given a 1 in 5 chance for DS after my first trimeter screening. We decided to go ahead with the amnio at 18 weeks and our daughter's diagnosis was confirmed. I can tell you that waiting to hear the results was actually worse than "the phone call". Yes, I cried and cried a lot. I was scared and angry and worried so much about my older son. I can tell you though that I would not change a thing about my daughter. She is 2 now and walking around and pushing limits, jut like any other 2 year old :) I have seen a side of myself, my husband and my older son that I never thought I would. Every day is not easy, but I can promise you that there is nothing terrible about DS. Wishing you comfort in your waiting time.

I meant to write ' a Minneapolis Chapter for D...

2012-02-29T13:08:58.711-05:00

I meant to write ' a Minneapolis Chapter for DS but that's 155 miles south of my home'

I'm just stunned at how many people have respo...

2012-02-29T13:06:34.426-05:00

I'm just stunned at how many people have responded an emailed me. I felt so alone with my thoughts and fears. I know we don't have a diagnosis yet, but our odds are not good, so I felt I should prepare myself now, rather than waiting until our world was turned upside down again. It's amazing how willing people are to talk to a total stranger, how so many of you can feel my pain, my fear, my sadness, my uncertainty. Today was the first day that I woke up hopeful that life might be alright with this little person whom we wanted so much...no matter how many chromosomes he / she has. I wish you all lived closer as I feel pretty alone up here on Lake Superior (minus the blizzard that's currently dropping 16 inches of snow at my house as I type). There's a Minneapoluc chapter for DS, but that 155 miles away. I feel, after talking with you all and hearing your stories, that the phonecall from the geneticist won't be as painful as I imagined. I'm so glad to have found this site. The other day, a patient said to me, 'You know honey, God only gives these babies to special people and you're a pretty special lady'...I wanted to believe her...and now I think she may be right :)
Thank You All
~Nicole

Nicole- I posted earlier- and I know that so many ...

2012-02-29T12:13:58.655-05:00

Nicole- I posted earlier- and I know that so many parents from around the world are here to support you. I have over 700 friends on FB, and about 500 of them are moms and dads of children with Down Syndrome. There is such a great network of parents- and that is something that I wish I had had just 6 and a half years ago when I was pregnant. We are all praying for you and your family.Please feel free to request me on Fb if you would like also. Johannah Bruns Back.

Hello Nicole! I just wanted to comment and say tha...

2012-02-29T11:11:04.204-05:00

Hello Nicole! I just wanted to comment and say that one of the most beautiful things that will happen to your family is to watch your two girls love your baby unconditionally. Many times that will help your heart heal to watch them love the new baby with no judgement, just pure love. I loved watching my son accept our daughter. Now I watch our daughter (almost 3) love our new baby. She is an amazing big sister! My kids have such an loving amazing relationship, normal in every aspect. I know that little wave was your baby telling you that everything is going to be ok. I don't have a blog personally but check out a couple of my favorite...http://pudgeandzippy.blogspot.com/ and http://www.kellehampton.com/ both Moms have great blogs. You and your husband can do this!! Love will guide you in raising your child just like it does with your two girls. You are already fighting and advocating for this baby. Keep fighting, praying and loving your baby Momma!!

Hello Nicole. Thank you so much for sharing with ...

2012-02-29T10:23:58.456-05:00

Hello Nicole. Thank you so much for sharing with all of us. My daughter, Lily, will be 4 in May. While Down syndrome is not something we expected, we embrace it. Lily is truly a light in a sometimes dark world. Know that my family will be lifting you up in prayer.

One more thing, this is the link to the Down Syndr...

2012-02-29T09:40:13.169-05:00

One more thing, this is the link to the Down Syndrome Society near you. Contact them. Meet some families face to face. See a baby with Down syndrome. See a toddler. See an adult. See the moms and ask yourself if they are more than you are...do they have something special you don't? I bet they are just like you. :)

http://www.dsamn.org/contact

Hi again Nicole! Thank you for reading all of our ...

2012-02-29T09:12:38.901-05:00

Hi again Nicole! Thank you for reading all of our stories and coming back! As you can see, when a mom calls for reinforcements, she gets it! We are like a bunch of sisters that have your back at all times. It really is an amazing community. My husband laughs sometimes and says,"You and the other moms don't play" when it comes to our kids.

Honestly, there is still some ignorance that our kids face. They may get picked on occasionally, but not like it used to be because we, as society, are generally raising kids to be more accepting of all people, including those with different religions, sexual orientations, race, and abilities. We are living in a wonderfully tolerant and accepting time!

I don't know anything about your state, but my state has medicaid for those with special needs. I didn't feel guilty using it because that is what it is there for. To help.

I promise you that I am nothing special. I was pretty selfish up until my mid-twenties. As with anything, you grow as you go. You become the mom that can handle anything! Just think about the first child you had...did you feel ready to even be a mom? I sure wasn't when my oldest was born...I was 22 years old and he is 11 now. I learned as I went. I was even better for my daughter who is 6 and by the time I had Trent, I was even better. But I still had to become the mom of "a child with Down syndrome" as he grew. I'm still making progress and he is three. We never stop progressing.

At the risk of sounding corny, you love your baby already....you felt love even before you saw his/her mouth opening and little tongue coming out...that reinforced your love. So let love be your guide...not outdated medical advice, pushy doctors, or even us moms. Just the love in your heart because when has love steered you wrong? Mine never has...it may have given me a bit of pain sometimes but it was never wrong. We obviously all hope you keep your baby, there is no denying that. I also hope you find some peace during this time of contiplation. I'm sorry that you are in pain right now. :(

If you decide to keep your baby, find doctors that support your decision and rejoice with you. Clear out that negativity. Love and prayers for you Nicole! And virtual hugs.

Nicole, As you can see, the DS community is an ama...

2012-02-29T08:02:13.431-05:00

Nicole,
As you can see, the DS community is an amazing one! Most of us don't "plan" on joining such a community when we get pregnant, but in retrospect, it's like getting an invite to some amazing party that few get invited to. I have 3 kids, and I can honestly tell you that our youngest (who has DS) is by far the easiest and most fun to parent! To quote Forrest Gump, "You just never know what you're gonna get." My oldest is a great boy with ADHD. Our middle child is in the autism spectrum and has a few other major issues that go along with that - she causes us the most stress, but we love her to bits. And then there's our youngest - our creative little adventurer. She was a micro-preemie born weighing 2 lbs 7 oz. She started reading at age 3 - younger than our other 2. Nah - I didn't "work with her tirelessly." Nope - I bought a DVD series called Your Baby Can Read off eBay really cheap and let it play in the background while she played. (I'm NO supermom! LOL)

We wouldn't trade or change our youngest for the world.

We'd love to have you as a part of our community!
My blog: http://adasperdown.blogspot.com/ (you'll notice most of the posts are about the middle kid - LOL)

Nicole, Hi! It is so very nice to "meet"...

2012-02-29T03:17:20.363-05:00

Nicole, Hi! It is so very nice to "meet" you!! I am the mom of 4 kiddos 3 boys and my Maggie Jo who is 16 (going on 25!) she is smart, sassy, stubborn, and loves unconditionally!! :) She is in the 10th grade at the high school and is the most populer kid at school!! Mags is very active in Special Olympics and loves going to all events! She loves cheerleading, dancing, singing at the top of her lungs! (Sunday was youth Sunday at church so they were all in the choir she was the ONLY one that could be heard! :) I just hushed and listened to her singing praises!) Maggie loves her life and we love her! I was 27 when she was born, I did not know before she was born that she would have DS, although when I was feeding her during the night I knew that she had DS but just blew it off and didn't say anything the Dr. came in late the next day and said that he thought that she had DS and would test her. I unlike most of the others did know about DS and the hardships that could come along, my first cousin also has DS and Lord let me tell you she is something else! she is spit fire bossy and if you are doing something that she don't like she doesn't mind tellin ya about it! :) She is 40 and going strong! I watched how my Aunt had to fight for the rights that Sonya deserved in the school! Of course it was so different back then but still today there are still times that I have to fight with Maggies school to! But thats just a thing! My girls are the light of my life and don't ever wish that they were not apart of it! Maggie has never been treated like she was any different than my boys, she's been grounded (more times than I can count!) she has chores, she has all kinds of friends she has a boyfriend, oh and she is the Facebook Queen!! :) I hope that you will find comfort in the stories of all of these Mama's on here I know I have cried reading several of them! Maggie did have open heart surgery when she was 4 and had her A/V canal defect fixed but has been a very healthy girl all of her life she has hardly ever had a cold! Now we have had our share of dentist visits, but nothing major! Please if you ever need to talk just send me a message jmrcmama@gmail.com or you can always find me on facebook @ https://www.facebook.com/profile.php?id=1076853431&ref=tn_tnmn#!/profile.php?id=1076853431
Thank you for taking the time to seek out more info before you decided to do anything! I hope that you will find comfort in these stories, Down Syndrome is NOT a death sentence I would take extra chromesomes anyday! Keep in touch!!
(((HUGS))))
Lisa

Dear Anonymous, My son Benedict is nearly 8 years ...

2012-02-29T03:11:23.223-05:00

Dear Anonymous, My son Benedict is nearly 8 years old and has Down Syndrome. He has a big sister, Larissa, aged nearly 10 who doesn't have Down Syndrome. After the birth of my son I was frightened, confused, sad. I was "afraid" of Down Syndrome, afraid of not having a "perfect" baby. Okay now we are 8 years later. How is our life? Wonderful, amazing, full of love, funny, loads of laughter, joy ...... no, we aren't straight out of a soap powder commercial. We also have arguments, worries, stress, running the kids here and there for hobbies, trips, friends, yes and speech and physiotherapy ..... those last 2 are for Benedict - Larissa wishes she had them too as they are so much fun. She has come with us sometimes and loves it. So I would say we are a normal family with that extra little something - and that little something is a superstar in the family - Benedict. He is A M A Z I N G !!!!!! Just you wait and see - you know that little wave and that turning towards you and looking at you and that thrill you got ...... well multiply that by billions for you and your husband and other kiddies and that is what you will feel every day just because of your little special baby, just waiting for the chance to show you what life is really all about. I wish you great joy in your pregnancy and the belief and strength to give your baby a chance to love you. Lots of love Clare. Oh yes, my name is Clare Greenhalgh Dierkes on Facebook and please request my friendship as we are all one big family.

Dear Anonymous, a little over 4 years ago I found ...

2012-02-29T01:17:09.231-05:00

Dear Anonymous,
a little over 4 years ago I found out I was pregnant. We had two biological children, had adopted two foster children and were in the process of adopting their baby brother. Our family had grown from two children to five in just over a year. We were not planning on this pregnancy.

I was 41 at the time so I had some of the special, old mom tests. Our chances of our baby girl having DS was 1 in 4 after the first test. The next one we went to 1 in 2 or 50/50. We decided to have an amnio to find out whose life we should celebrate.

Knowing our Jillian would be born with DS really helped. My big advise, don't read the studies that are on line. They are scary and inaccurate. Meet with local families, read blogs by those of us who have been blessed by an extra chromosome. You will find a totally opposite side of the story.

What I didn't realize is, the fact that she is a "Schulze" is much more evident than I thought. Jillian learns in the same manner as my oldest does. She reacts to things the same way her sister does. The Down Syndrome, is only a part of her. In the same manner as eczema and far sightedness are only a part of my other children.

Yes, the "special needs" takes special time and care. Jillian's special abilities have blessed our family tremendously. I am extremely excited for you and your family! Take the time, risk it all, do what only 1 out of 10 women do and keep your baby. I promise, you will not regret it.

Nicole, congratulations on your beautiful baby! Th...

2012-02-29T00:32:46.382-05:00

Nicole, congratulations on your beautiful baby! There are so many Momma's ready to support you should you need it. This is a scary time filled with lots of uncertainties. Really, isn't that what parenthood is? We found out our daughter had Down syndrome a few weeks after she was born. Boy, we thought some things I never imagined we were capable of thinking. But you know what, our life rocks! We may have one or two extra appointments now and then, but that is OK. Most of our time is filled with gymnastics, playdates ( with kids who do not have an extra chromosome), trips to the park, family date nights, and many other amazing activities. We love our journey and I am sure you will too. We are all here for you! As you can see, many people will have you in their thoughts! Hang in there! Best, Shannon