Texas mom of 8-month old Sophia is new here!

Sandra - posted on 06/12/2010 ( 8 moms have responded )

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Hi!
My daughter was diagnosed with DS 2 months after she was born. I have to admit that this diagnosis hit me very hard and that I am still struggling with it. I felt like my baby I had in mind died and I had to rethink everthing about her and her future. My baby's doctor did not help much when he just gave me the diagnosis on his way out and did not give me any support. He just said: "I took care of your boy's ear infections and I will do the same thing for Sophia."
I am very thankful that Sophia had no heart defects at all. She already has tubes in her ears and we will be having another hearing test coming up next month. Hopefully it will be fine now as she failed her hearing test at birth.
She is so sweet and smiles all the time! It just breaks my heart that she will have limitations that will keep her from being all that she could be without that extra chromosome.
How do you all put the worries about the future aside? Or is this all still normal since my little girl is only 8-months old and the circumstances this all came together are not the best?
Please don't get me wrong, I love my girl to pieces - accepting the new course of events is just difficult for me and I don't think pills are the way for me. So I am hoping that hearing others that went through similar events might give me some good suggestions and inspirations.

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Tara - posted on 06/19/2010

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My baby girl is two...The doctor told me that they suspected that she may have down syndrome but wanted to run the test first before saying one way or another. I just kind of put it in the back of my mind. I was preparing to leave the hospital Hailys dad was in the car already and a nurse said you need to come to the nursery the doctors on the phone. I went to the nursery and the doctor said The prelim report is in and you daughter has downs. I lost it. First of all I just had a baby and the doctor told me like he would have told someone they have strep throat. I was very uninformed and reallly didnt know what down syndrome was but thought it was something horrible. My daughter had an echo done to find out she had a mitral valve defect and a hole inbetween the chambers. I am sharing my story with you because I still have the days where I feel sorry for her or worry what the future will hold. I love my daughter to death but I think its just in our nature to worry. My daughter is delayed developmentally and functions at about a 10 month old. She is making more strides in the last few therapy sessions. I have found out that I dont even bother researching anymore because everything I found was depressing and there wasnt a definate that my daughter would develop that way. I have found that I become more depressed after researching. I have found that I am better by living in the day and figure stuff out for ourselves. We still follow the testings that the doctor recommends but otherwise we jump hurrdles as we come to them. My daughter had eye surgery this past october to correct the crossing of the eyes. My daughter is two and just went her first open heart surgery on Tuesday. Tommorrow is Sunday and we will be released. So just 5 days after surgery we will be home bound. I hope my story helped you.

Renee - posted on 06/14/2010

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I feel you. I knew the moment that Max was born...still think about that day often...don't think worry ever goes away. Just gets easier to live with. I started running and going to the gym more because I feel that I need to live forever to make sure my son doesn't go into a home or is abused or taken advantage of. People today are not the same as they used to be...My Max is 8 months old as well...and he is just awesome. I post video on my FB of his accomplishments and fun stuff :) I feel comfort seeing video's of other baby's..kinda like a gage..

Love my Love Bug...wouldn't trade him for the world.. This blog helped me. Let me know that my story is not unique. This lady litterally told my story...from the sadness to the joy to the unexpected. highly recommend..and she has beautiful photography posted as well. and her music selection is awesome...but i warn ya..it will hit home, you will cry...but you will smile, and smile some more :)

http://www.kellehampton.com/p/nellas-bir...

you can check out her story before the birth of nella..brings me right back. but it makes it easier to deal...cause I am by no means alone, nor are you. good and bad.

[deleted account]

Hi Sandra, My name is Bitty and I'm mom to Nicky who is now 13 and one of my favorite people..I understand completely how you are feeling...been there...if you could join a group like ours you will see all the things "our" kids achieve...Downs kids do not have "special" needs..... they have the same needs as any other child....please feel free to contact me if you like, I know several Moms who would be happy to talk to you....

we are just Moms....but we are part of a "special" club....we become members when our kids are born

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Cindy - posted on 07/31/2012

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you go through it because you love her .
she is part of you . you will find the way for it to work for you ?
it hard at first for everyone .
i am 22 and my baby boy is 4

Emily - posted on 09/09/2010

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I have a 5 month old baby boy with down syndrome. He also didn't pass is new born earing test. We went back 4 other time and he still didn't pass. He now has tubes in his ears too. I'm hoping that next month he will finally pass is new born hearing test. I'm new at this whole DS stuff too. I'm just taking it month by month. I try not to think too much about his future and just take one month at a time. I was lucky too that he didn't have any heart problems. He see the up to 3 program once a month tell he starts getting bigger. Then he will see them more each month. Have you heard of the up to 3 program they help you with ever step of the way tell they are 3 years old.

Judy - posted on 06/29/2010

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my daughter is 7 months old and even though she has DS she acts as normal as any other child her age!!! I don't foucs on the fact that she is DS,,,I started her on the "My Baby Can Read Program" and she is inter acting with it so well,, I think if you guide them the same as you would any other child that there is no limits to what they can do!!!! I feel very blessed to have her in my life,,,,,,,,,Don't get me wrong i do have my days that i get depressed when thinking of her future,,,but just know in my heart that everything is meant for a reason and all will be okay..

Juana - posted on 06/20/2010

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Hi , I have felt like you myself. I already had 2 boy so I was so happy to find out I was having a girl.But in the operating room I was told she showed signs of DS. I was devastated, all my dreams where taken away with with that statement. The fact that my daughter will have a hard time in her futer, that she will nevere have her own children, it hit me hard. Like you I was given pills but I took them only for a week and realized that no pill was going to take the pain away.My daughter just turned 7, in fact she spent her birthday in the hospital with pneumonia.I have had so many doctor appointments ,hospital visits, its crazy, Some kids with DS are healthy ,my Illiana isn't . Like another mom posted don't look up so much into what medical problems they might get cause you will get stressed out, one doctor told me don't worry about it unless it happens to her.This group is here for you

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