down syndrome - how did it change your life?

Thu, Nov 12 2015, 8:41 am

My son with DS is now 4. I can't say he changed my life in the long run. In the short run the first year was stressful because he had open heart surgery and then until he was 3 he had early intervention so therapist coming in and out of the home. Now that he is in school he is really just a regular family member who is super cute, annoys his 2 year old sister just for kicks, is convinced that he is Uncle Moishy....

Not to say that there aren't kids with DS who are more challenging but mine has no real behavioral or medical issues at this time so life changing is not inherent in the diagnosis.

Is your baby's heart OK? That was really a very big stress for me.

I remember being in the hospital and my husband telling me all the people who left me messages and I said - I probably want to speak to all these people at some point BUT I DO NOT NEED TO SPEAK TO EVERYONE WHO EVER HAD A KID WITH DOWN SYNDROME ALL THIS WEEK!!!

Take it slow. It will be good. A lot of people who can guide/help/speak to you out there when you are ready. Better to find someone a little bit ahead of you so they still remember what your stage was like. Also, different resources are available in different locations so speaking to someone local is a good idea too. Where do you live if you don't mind saying?

Feel free to contact me at any point.

pelle

Thu, Nov 12 2015, 9:44 am

Mazal tov on your precious baby. (I have a very involved special needs child.) I just want to tell you to enjoy and love your baby!!! Don't look at him/her as a diagnosis. Take it one day at a time. one hour/minute if you need to. Your emotions might be happy and excepting at one point and very low and hurt at another. Except ALL these feelings. they are normal and part of the process of healing. By healing I mean excepting (or struggling to) the fact things are not what you had planned and dealing with the pain and differences of another. Your husband might have a different way of dealing with the pain. One day you might be happy accepting it all and he might be processing the pain and feeling low. I's all normal, you each will have your own journey of processing the pain. May it only bring you closer. Mazal Tov again and may your baby go from strength to strength and may you have tremendous nachas and simcha from her/him!

amother

Sapphire

Sat, Nov 14 2015, 2:58 pm

Op here. Thank you, everyone, for sharing your insights. I identify with all you wrote, from the emotional ups and downs, to the need to take things one day at a time, to the lists of everyone who ever had a baby with ds and would be delighted to talk to me Wink

Bh, besides for being small, my baby is doing well. No pressing heart problems, and nursing is going fairly well, both issues not to be taken for granted! I still find it hard to come to terms with the knowledge that he will never be a "regular" child, at least not until Moshiach comes. I can only hope and believe that we will learn to love him and be happy with him, no matter what he looks like or what his abilities will be.

Jewishmofm

Sun, Nov 15 2015, 4:42 pm

Ds has a rare chromosomal disorder, partial trisomy 21. Not exactly DS, not exactly anything else...his minute to minute needs (5 or 6 er visits, 7 surgeries, one out of state, 2 trips to the PICU) ruled our lives until he was 1.5 years old. Now he's 2.5, and has taken his place as just another one of the kids.

Ashrei

Sun, Nov 15 2015, 8:55 pm

Mazal tov! When my sn son was born, the thing I liked most to hear was, "The truth is, they [doctors] don't really know what will be." Which was so true! What is downs, just a word. It sounds like he's off to a great start. Try not to box him in - he can do anything and achieve anything! You'll have amazing nachas from this child!

hadasa

Sun, Nov 15 2015, 11:53 pm

Op here

. Ready to "out myself". I used to be a frequent poster on this site, but basically dropped out several years ago. But now with this new situation I see it will be good to begin to connect to people who are in similar situations. Feel free to pm me Smile

Jewishmom8

Mon, Nov 16 2015, 1:43 am

Mazal tov on the birth of your baby.
I also once gave birth to a baby with a special need I really understand the feelings.
please remember this is your baby and your baby loves you.
Your baby does not know it may have downs. It's just your beautiful baby.
just love your baby to bits and take it day by day.
I hope you have lots of nachas and a refuah shleyma. Please take extra care of yourself.
Hug