You are here

Sad News

BaseballMom42's picture

I feel really terrible right now because my sister just found out her baby has downs syndrome. She is 12 weeks pregnant and just got the results yesterday. I really want to be there to support her. I never thought I would get to be an aunt because she always said she never wanted children, so I was really happy when I found out she was pregnant. My sister said that she will do anything in her power to provide her child with a great life. And I just want to be there for her as much as I can. The hard thing is that she lives in North Carolina and I live in New York. I really want to plan some visits down to visit her, but now with SS15 living with us it makes things tough. I have so much stress in my life right now, I don't need the added stress from SS15, I just wish he would go back home to him mother. I don't want to focus on him any longer, I want to focus on helping my sister. But either way, I will do everything in my power to support my sister.

Comments

herewegoagain's picture

Sorry to hear that...I know that when we hear such news about our kids, it is ALWAYS difficult. But please start now looking for lots of different groups, play date type places, etc. for kids with Down Syndrome. I know a girl where we live, she hangs around with ALL the other kids her age...she's about 13. She is part of all the competitions we have for the kids here, she does her piece in talent shows here, the other kids protect her and play with her, etc...She actually is a great swimmer and will be competing soon in some worldwide swimming competitions, etc...but her mother treats her like all other kids to a certain extent. If your sister and your niece have the support, find out about all these things they can do, it will be much easier and her life can be great too! Good luck!

ctnmom's picture

Hugs and prayers. Everything will work out, it'll be ok. Start planning a trip now, you'll feel better once you see her, and it'll be great for her too.

AGreenWon's picture

There is not a lovelier (or easier) baby in the world than a down syndrome baby. I know this because my Granddaughter, age 11 is down syndrome. I remember how I cried when I found out and have had guilt every since that day. She is the greatest gift of love I have ever experienced. The joy she carries is infectious and stays with you for days after being in her presence. I hope that you can help your sister by letting her know this. Her baby will do anything that any other baby will do, just a bit slower and with a lot more joy. The rewards of a down syndrome baby are much greater than a normal baby. They are easier to deal with and share thier little hearts like no other child in the world. Honestly, your sister is in for a real treat.

goincrazy.com's picture

^^^^This made me tear up, What an awesome piece of advice. I know it can be devastating realizing you won't have a "perfect" baby but it's true. How many down's kids have you seen that haven't been friendly, smiling and super sweet? She will be ok

enoughisenough2me's picture

that's the beauty about down syndrome people/kids. they are so loving, so caring and don't give a damn if someone doesn't like them or treat them unfairly. their personal space is much smaller than someone without down syndrome. i never knew a kid with down syndrome who wouldn't hug me or anyone else if they saw someone needed one and they didn't care why, if someone is open to the same love they are, they'll give it without feeling weird.

i agree, down syndrome isn't bad, it's just not "normal" but they are the most loving people on this planet Smile

BaseballMom42's picture

Awww, thank you for sharing that! It is nice to hear stories like that. That is how my sister is trying to turn this into a positive learning experience. She said she already loves her baby, and couldn't image doing what some people have suggested to her. I think she will be in for a treat no matter what happens. She said to me, "maybe this is my life path, maybe I was meant for this." She already accomplished all she thought she wanted in life, graduated with a masters in accounting, became a CPA, is working at a huge firm making great money, but she said she wasn't happy, and knew there was something else out there in life she was meant to do...maybe this is it. Maybe this is her life path.

stormabruin's picture

I agree with AGreenWon. Down's Syndrome children are some of the happiest MOST joyful children. They live to love & be loved.

Of course, there are challenges in raising a DS child, but most of those challenges will come through the ignorance of other people. Along with those challenges though, she will experience real blessings.

ctnmom's picture

Years ago when I worked at a market, a little girl with DS used to come in, just a pure joy, with long beautiful blond hair. Once I was up on a ladder and dropped something, she ran over to pick it up and hand it to me. Now how many of these awful skids would help out like that?!

DeeDeeTX's picture

One thing a lot of people uneducated about Downs do is to expect every Down Syndrome kid to be Corky from Life Goes On (am I dating myself here?) The Corky types are best case scenario.

Please don't start at your sister from the perspective she willhave a high functioning Downs Syndrome kid. Statistically, that isn't likely.

It might be beneficial to her to help her research support in her area (support groups, resources, etc.). She will probably need it, and she is lucky to have a sister like you willing to help.

BaseballMom42's picture

We have already begun the research process. And my sister wants to prepare herself where life takes her, no matter what the situation. We will definately look into support groups. My DH has worked with developmentally disabled individuals for years up until recent when he decided to go back to school to beomce a physical therapist, so he should be a great resource. He too told up that there are so many levels of ds from high functioning to low functioning. I just want to be there for her and love this baby along with her no matter what the outcome.

DeeDeeTX's picture

It sounds like you already know a lot then. I just said that because we had a cousin with Downs and a lot of people expecting him to be high functioning and I think it was such a shock to many when he was not....

BaseballMom42's picture

Thanks for the support, my DH said the exact same thing, about the ones you see on tv are always best case scenarios. So we will try to prepare for it all. I think I might go on Amazon.com today and see if there are any books I can buy and send my sister down some.

BSgoinon's picture

Awe, that is never comforting news to hear. I completely understand. My (almost) 2 year old nephew has DiGeorge Syndrome, which has a lot of similarities to Downs. He is missing his 22 chromosome. I have to tell you, he is the sweetest, happiest most loving baby. And each milestone he passes, is that much more exciting because we aren't sure if he is going to actually accomplish them at all! It is a celebration every time he learns something new. Right now it is his speach. He may not ever have a normal vocabulary. He knows a lot of sign language. But he does say "IRONMAN!". And daddy, and mommy and grandma. That's about it. But every time he yells out IRONMAN, everybody in the room just lights up.

The medical problems are difficult. And sometimes very stressful for all of us, but those are things you just figure out. Your sister WILL need your support. Even if it is just an ear listen, a shoulder to cry on... or a break while she goes to get herself a mani-pedi. Be there for her. And if you ever need to talk, PM me. I am in your shoes.

BSgoinon's picture

Also, find support groups, forums, outreaches... whatever you can to keep yourselves informed of the most current information. Keeping in touch helps with the coping. Talking to people that have been where you are about to go makes a world of difference.

My nephew has physical therapy 3 times a week and even just his interaction with other kids "like him" makes a world of difference.

BaseballMom42's picture

Thank you so much for that advice. It is nice to here. I will definatley look into support groups and forums for her and for myself because I want to be a great aunt.

BSgoinon's picture

Depending on where you live there are a lot of financial supports as well. My sister did mention that she will NEVER move out of San Bernadino County (California) because of everything they offer my nephew and their family. Tons of resources! Make sure your sister starts looking in to this stuff now and getting reccomendations for specialists. The baby will have a whole TEAM of doctors that will stay with them forever, if they stay put Wink

BaseballMom42's picture

Thank you for sharing. That is so true, you never what life will bring you. You just have to make due with the cards your were delt.

Lalena75's picture

Some of my favorite people are downs, they are tge clients I think is hardest to lose and will be hard to leave when I move on from this field. Several have jobs went to school and 1 is going to college for a social work certificate. They are loving kind and oh so generous and give the best hugs. You can help by letting her talk, vent find services to help her, info all over the place she will want and need. Babies are a beautiful thing a special one is just a new and different challenge and a gift to each person he or she meets.

BaseballMom42's picture

So true everything you've said. A baby is always a special gift no matter what the circumstance. I can't wait to meet my niece or nephew!

Lalena75's picture

Oh and I almost forgot my favorite and young man (well he was in his 40s but seemed so young) had downs I worked with him and when I was pregnant with my ds he was so excited for me. When he found out I had the baby he all by himself looked up the number for the hospital to find visiting time, went out and bought a fabric clown baby toy called a taxi and came to see us. I cried because it was so very sweet and because he was excited I let him hold the baby because no one ever let him before he made all sorts of comments about tiny toes and handsome eyes it was a joyful visit.
Later I found out from his mom what a challenge it had been for him to accomplish that visit. He'd never used a phone book bever took a cab, never shopped without her help but he had wanted so bad to do "all the nice things for a new baby like regular people" in his own. I cried. I still have the clown toy safely put up, his name was mike, and he was such a wonderful guy. Always made people smile and happy and I was proud to call him my friend

BaseballMom42's picture

What a nice story. Sounds like he is a very special person. It is so nice to hear stories like these, puts a smile on my face.