Parents Closed OFF: New Born w. Downs

Jennifer - posted on 12/28/2008 ( 20 moms have responded )

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My dear friend just gave birth to a son with Downs Syndrome. She and her husband have completely closed themselves off are will not take phone call or visitors. It has been 3 weeks and I am very worried. This was a complete shock to them, as this was their 1st baby. How can I help ...

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Wilma - posted on 10/05/2010

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My first child was born with down-syndrome, I also have three other children that are not. When someone has a special child and not prepared for it , it takes time for them to adjust and and in a way just to cope. When they do let you in they just need love and support. They also need to get with other parents that has downs. They said my son wouldnt live to be 12 today he is 37 he has alot of health problems now but he can bring me so much joy. If they would ever need to talk to someone I am always here.

Jane - posted on 10/05/2010

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When my son was born, we knew there was a chance that he would have have Down Syndrome, and sure enough he did. We had a fabulous Dr. from the Children's Hospital talk to us about Down Syndrome the day after he was born. He sat down with us and told us that he was a baby...he eats, pees and poops, cries and sleeps, just like any other baby, he just has a little something extra, "an extra chromosome." He told us the he would be able to do as much as we wanted him to do, it was all up to us. We decided that God must have thought we were pretty special to trust us with such a special gift. Christian is now 9 years old, in 2nd grade, and doing great. He's a little behind in speech, but is one of the most popular kids in the school. He is happy and healthy. If I had the chance to go back a choose between a child with Down Syndrome and a child without, I would surely pick a child with Down Syndrome. They are sooo loving and he teaches me something new every day. Please keep trying to reach out to her. She will soon find out that there are so many resources available for her son. We have been so fortunate in so many ways!!

Julie - posted on 09/29/2010

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Wow... Jennifer what a special friend you are. Give them time but also push to celebrate such a great event! Encourage them to get involved with the Down Syndrome Organization - they are amazing. My daughter doesnt have DS, but they welcome her in and have done great things for her. The National Buddy Walk is coming up and it would be a fabulous event for them join. Support this new life they are going to have. Get involved yourself. You could build a team for the Walk in honor of this new gift!!! It's scary when it's your first baby - my exceptional daughter was the first too. Keep being a great friend and they will work through it. Stay positive and excited. DS children are so beautiful and give so much love. My daughter's best friend can't leave school without giving her a hug. It's precious!!!

Felicia - posted on 09/28/2010

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what a beautiful poem that was! My daughter has a chromosome deletion and we did not find out until two weeks after she was born. so it was a huge shock and they dont really know much about it. I was very much in denial and yes people handle the grief differently, I agree with alot of the ladies on here, just send a card and just be happy like it is any other baby! make her feel like its not a huge cloud over the moment, because it is still an exciting thing and she will come around to realize what an amazing gift she has been given. I would never trade my daughter for anything, she has been the light of ours lives and even though i will have gray hair before i hit 30, she has brought so much joy. just have patience with them, they will come around! God bless!

Helene - posted on 09/28/2010

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After 11 years and 3 miscarriages, I had a beautiful perfect baby girl. We tried for one more and our son came into this world !! This beautiful baby boy, blond hair and blue eyes with Down Syndrome. We asked ourselves why God did that to us after all the struggles we had to have children. Then, we realized that God sent him to us because he knew we could take care of him and love him with all our hearts.. We also realized that our son have nothing (deaf of one ear, that's it) compare to most children we saw at the hospital. We are the ones that are BLESSED to have him in our lives" !!

Linda - posted on 09/22/2010

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Hi, I'm not a mother of one of these special, special children, but my neice just found out that her unborn daughter has DS. I am wondering what I can do to help her. I have loved every post so far, and will be buying the book "Gifts".(and sending that wonderful poem...Thank you so much for that) Any suggestions on what I can say or do? I really want to support her. Thanks in advance.

April - posted on 01/15/2009

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There is also a wonderful book titled Gifts: Mothers reflect on how Children with Down Syndrome Enrich Their Lives, by Kathryn Lynard Soper. It is written by mothers, and has numerous short stories. You will laugh and cry. At least I did. The authors describe so vividly and honestly the emotions a mother goes through when she receives this news. One of the most memorable things my best friend did for me was come by just to hold me and cry with me... to share in my pain. My daughter is 2 and was diagnosed while still in the womb. This was our first as well. And it was hard - you grieve, and you have to go through the five grieving steps.

But more than anything, I would offer her hope. Because if you have hope, she and her little blessing can accomplish anything. There is so much therapy and early intervention out there today - her son can accomplish anything HE wants to.

[deleted account]

Quoting Jennifer:

Parents Closed OFF: New Born w. Downs

My dear friend just gave birth to a son with Downs Syndrome. She and her husband have completely closed themselves off are will not take phone call or visitors. It has been 3 weeks and I am very worried. This was a complete shock to them, as this was their 1st baby. How can I help ...



Hi Jennifer,



I was 18 when I had my daughter who was born with DS. Huge shock. I went through many stages. crying...mourning..denial..fear..anger...until one day I relized how blessed I was to have this beautiful, perfect child in my life. Your friend when she is ready will come to you. Give it time. Time does heal pain. It took me many years to understand why and my place, its hard but I wouldn't change anything. My daughter is now 14 years old and she has taught me more about life and this world then I will ever be able to teach her. You are a dear friend, how you can help, patience, understanding.

Jennifer - posted on 01/15/2009

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Thank is a beautiful story.  I will share it wit h my friend. God Bless you and your son.



 



Jenn

Alison - posted on 01/15/2009

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My son was born with DS he was my first child and yes it was a great shock i was 21 at the time, it took me 6 months to fully come to terms with it.

I decided was was going to bring him up just the way i would bring any child up, by the time he was 8 months old he was holding a cup and trying to drink from it.

he went to school at the age of 5 and loved it, he could make his own toast for breakfast and make himself a cup of tea, he loved doing every day things a child would do,my advice would be try and carry on as you would if your child did not have DS and cross each bridge when you come to it, x

Brandi - posted on 01/14/2009

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i really hope your friend will come around. my son is down syndrome as well. he is my oldest of 3 boys. i did know that he would be ds when i was 5 months pregnant. my husband and i were able to go through a "grieving" process prior to the birth of our son. we were told to expect many health problems as ultra sounds indicated some major problems. he was born with transient lukemia and stayed in the nicu for a month and a half. he has been quite healthy ever since. i wish that i could speak with your friend. they are probably very afraid of the unknown and upset thinking that their child isn't the way they wanted him to be. i understand, but i do know, that my son has blessed my life deeply. he is such a special little boy. i adore him more than i could ever say. i would never change our precious little boy for anything. i believe that some of my biggest "trials" have turned out to be my biggest blessings. i used to pray that he would be okay and that he would be "normal" before he was born. now i just thank God for "unanswered" prayers. i would be missing out on so much if i didn't have takai. i pray that your friend will come around. she has been blessed with a special "angel". i also read the poem "welcome to holland" a number of times. it really helped me and my extended family as well. your friend is lucky to have you. you sound like a great friend. hang in there!

Cheri - posted on 01/03/2009

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I am so glad that you posted that poem...it is such an acurate description of what I went through and still go through when my friends with babies etc...I just always remember that I am in a different but still yet beautiful place...I am hoping these new parents will find help in it.

Jennifer - posted on 01/03/2009

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c1987 by Emily Perl Kingsley. All rights reserved



I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......



When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.



After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."



"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."



But there's been a change in the flight plan. They've landed in Holland and there you must stay.



The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.



So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.



It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.



But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."



And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.



But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Amy - posted on 01/02/2009

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As the mother of a little girl with DS (which, it's Down syndrome, not "Downs" syndrome...) I can only encourage you to be persistent. Everyone deals with the news differently. And while you need to be there to listen to their fears and concerns and sadness, it's even more important for you to be there to offer your congratulations, oohs and aahs over their son.... Everything you would do for ANY child. You can also visit my blog for some good pointers: www.parham.org.

Jennifer - posted on 01/02/2009

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Karen and Kristi....you brought excellent insight to this situation. He is a new baby and just like any other new baby he deserve to be celebrated and treating as such. I have sent emails and left several message asking if I could drop off dinner or simply send a card. They are still not responding to anything. At this point I am waiting hear from them. But what I might do is drop a card in the mail with a gift certificate. That way I won't be "over" stepping my boundaries and they will still no we are thinking about them.

[deleted account]

I agree with other replies.. but in addition it helped me that people still celebrated the birth of a new baby!! Baby gifts, cards, cloths, etc. He is still a baby and needs to be oohhed and ahhed over just like any other baby. My daughter will be 2 in March, and honestly there are days when I am still angry, but you just keep going...



So, with that in mind, I would have loved it if you just come over with baby gifts, food, etc that you would give any baby... and just had someone to chat with. On the other hand, it was kind of depressing (right away anyway) for people to start getting me all these books on Downs, sign language, special needs etc. I wasn't ready for that right away, I just wan't to #1 get out of the hospital and #2 enjoy the baby!!

Hope this helps, K

Karen - posted on 01/02/2009

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My daugther just celabrated her first birthday. she was our 5th child and we were unaware of her diagnosis until birth. I do agree with Cheri- my sister gave me that poem after we brought Kaitlyn home and it is so true. We still have dreams they are just different now. I also was told about a book by Dale Evans-Angel Unaware that I picked up. Having a child with Downs Syndrome is a shock and someone once told me its like having someone with a serious illness- people keep asking how you are, what they can do to help- you are so overwelmed and really don't know what it is you need that sometimes just dropping in with a meal and normal conversation is the best. My thoughts and prayers are with you and your friend. It has taken me a year to really come to terms and accept that our daughter will never be like my other children but I would not change anything. The is our angel, our special angel.

Cheri - posted on 01/01/2009

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If you can get a copy of the poem "Welcome to Holland" really put alot of things in perspective for me. It was hard for me to come to terms with it...but I slowly came to realize that I was so blessed and that God had a special plan for me and that is why he gave me such a special child. But it is hard...Daniel wasn't diagnosed at birth, so we went through 3 weeks not knowing why things were the way they were. Just keep in there, she will need understanding people such as you...I know I appreciate my understanding friends so very much. I will keep her in my thoughts and prayers.

Meredith - posted on 12/31/2008

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I hope this helps. My daughter has downs and at birth we were not expecting it. She is are first as well. It is hard to deal with. Those first few days were REALLY tough. Please Keep trying!!! If you do not think that she will be offended you might just drop by and check in on her. Take them a meal, or even send a card. Please don't give up on her. she will come around. She is probably finding it hard to talk about it. When you get news like this you feel like everything that you wanted for your child won't happen anymore. If you get her to talk let her bring up the subject. she'll talk when she ready. Again i hope this helps.

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