One of the unpleasant things that come with running a website like this is getting comments from “devastated” parents who just found out that they are going to have a child with Down syndrome like this one below.
It pains me more than anything to think of the agony people are going through and all I want to do is reach out an rip that pain right out of their body and transport them 2 years into the future — at which time they are going to feel blessed by their new child and wonder why they ever felt so distressed.
Unfortunately life doesn’t work that way and many of these parents are going to have to go through the inevitable strain of being scared and embarrassed and unsure of themselves.
Many people reach out to me and hope that I can say the right thing or tell them the right story or point them in the right direction to an article that will make it all ok but the only thing I can confidently say is that time is what will make it better and those feelings you have today will dissipate. I want you and your husband to know everything is going to be alright. People are nice and generous with our children now, schools are accommodating, people will stare at you but those stares will also be accompanied with a smile and heartfelt appreciation of your sacrifice and obvious love you feel for your child.
When you are ready enough to begin to let more people know about your situation, it is a good idea to get in touch with your local support groups — some can be found here and there are many more out there that are ready to help you and your husband through this difficult time as well as in the future. You will find parents that have gone through the exact same thing you are going through and you will meet their wonderful kids and you will start to feel better about the promise that your family will have in the future.
On this site there are numerous member created blogs that recount their situations and how they were able to get through this tough time. Many others can also be found on-line. Also, some of the major support organizations have expectant parenting packets that will also help you better understand what to think about and provide some suggestions about what to do going forward.
I’ve stopped paying attention to how many readers come to this site due to it becoming more about numbers than about people — So, I’m not sure how many readers this site has anymore but if you do read this article, please send your best wishes in the comments below and let her know you are wishing the best for her and it will be alright.
Thank you all!
Justin
Christina Robinson
My newest grandchild, Brooke, born August 10th, is beautiful and perfect. We were told she may be born with Down Syndrome but when she was delivered she didn’t show any signs of the syndrome. Just a couple of days ago, while I was holding her, I noticed that her facial features were changing and she was experiencing tongue thrusting. We don’t know the results of her blood test yet but I am 99.9% sure it will be positive for Down Syndrome. I would like to be a source of positive information and direction. Brooke is still perfect to me and I believe her to be a blessing for our entire family. I don’t want to feel “devastated” or sad about this lovely child. I would love to be in contact with other local families sharing this same challenge.
Kathleen
Hi Ladies- My Daughter is 2 -she has Down Syndrome. I also have 3 grown boys 23,21 & 15 and another daughter who is 3-1/2. I do know some are sad/worried when they get the news “your baby has DS” I don’t know why but I was not, Lex was diagnosed during an ultra sound that showed she would need open heart surgery after birth and maybe that’s where my attention was focused.
Lexi is 2yr,4 months- she does not walk or speak but she is sure trying! she also knows sign language.
Will having a child with DS present challenges? YES, but ultimately they are her/his challenges and it is simply our job as parents to help them overcome and meet them to the best of our abilities. Lexi spent 3 months in hospital then open heart surgery at 3-1/2 months and has had no other medical complications.some children do tho . She is the joy of our lives, the fact that she has delays only makes her accomplishments more joyous.
Its easy for me to say this but may be hard for you to do-don’t think it as ruining your life/a burden. The fact is he/she is your child and if you don’t treat them any differently they will thrive
I am fairly new to the wonderful world of Down Syndrome but I read and learn as much as I can and have many resources on line and friends on line with children who have DS. I am more than happy to share my stories and friends with anyone who needs support.
Scott
I remember feeling helpless. We didn’t know our daughter was going to be born with DS. The first thought you have is, “what did I do to have God challenge me this way?” The truth is, God has found grace in all of us that He has blessed with a child with DS. It’s not something we recognize right away but it’s the truth. He has trusted us enough that He has given us the greatest gift.
This is a link to our Down Syndrome Guild’s newsletter. I wrote the Dad’s Corner article a few years back about acceptance. You may find it interesting. God bless.
http://www.kcdsg.org/files/content/November%20December%202008%20Connections.pdf
Becky Meisner
My son Casey, was born 16 1/2 years ago. I was asked during my pregnancy if I wanted an amnio and I said no because no matter what it showed I wouldn’t terminate my pregnancy. I always had a “feeling” in my heart that my child would be born with Down Syndrome. Don’t know why I had the feeling, but I did.
Sure enough, Casey was born with not only DS but with Hirschsprungs disease. The first 3 years of his life it seemed we were in the hospital more than we were home. All due to his Hirschsprungs.
I can honestly say that there isn’t one single moment of the past 16 years that I would go back and erase. Casey has been the love and the joy of, not only my life, but of so many others that he has come in contact with.
As Christians we KNOW that God gives us nothing that He is not there to guide us through. I am not going to sugar coat it and say that life with a child with DS is going to be a breeze but I am going to say that life with a child with DS will change YOU in ways you never would believe. There’s a saying that goes..God didn’t give us our child with Down Syndrome so we could teach them, He gave them to us so that they could teach us. Casey has taught me patience, the real meaning of unconditional love and forgiveness.
Try to get through your pregnancy with as calm a spirit as you can, believe that God knows what He is doing in your life and when you hold that tiny, beautiful baby at the end of your 9 months you will wonder..why in the world was I worried!