Down syndrome is the most common genetic variation present in the womb. It is estimated that Down syndrome occurs in 1 out of every 691 births .
Almost eight years ago, our friends received their first-born daughter into the world, and she was born with Down syndrome. This is where I wish I could tell you that I knew exactly what to say to them when Jennifer was born, but I did not. I had no experience with children with special needs, and it was the first time one of my friends was dealing with a diagnosis of any kind. In fact, I turned out to be a lousy friend. At first, I avoided the topic of Down syndrome because I didn’t know what to say. Later, when I finally said something (I told them I was sorry), well… I probably should have kept my mouth closed. Fast-forward two years after Jennifer’s birth, and our daughter Nichole was born with Down syndrome. You can read about that story HERE.
Every person is different. Our personalities, our outlook in life, and our backgrounds do affect the way we handle and perceive things. The most devastating comment I received came from a parent of a child with Down syndrome. This was the exact same comment that was the most encouraging and uplifting to our friends. As you can see, there is no magic formula to know what to say or not to say.
But here is a general guide of what to say or not to say when your friend’s baby is diagnosed with Down syndrome:
–God gives special children to special parents.
It’s not true, there isn’t anything special about us. We are most likely struggling inside trying to make sense of what just happened and this comment brings on pressure and high expectations. We do not have more love, acceptance, or compassion compared to the family next door.
It is okay for you to feel sorry; you probably don’t know much about what it is like to have a child with Down syndrome, I sure didn’t before I had my child. Remember, I even told our friends I was sorry, and they quickly (and gently) explained they didn’t like that statement because it got in the way of celebrating a new life, and they were not sorry they had a child. Once I had a baby with Down syndrome, I recognized how hard it was to hear that statement. To hear other people say it was devastating. It reassured me that this indeed was really, really bad. It also put all the attention on her diagnosis, and not on the beauty and celebration of her new life.
–I will pray for God to heal your child.
This is a big one! Please do pray for healing of medical conditions. However, do not pray for God to heal a child from Down syndrome. Down syndrome is not an illness. People are not sick with Down syndrome, it is a genetic condition.
Here is my favorite passage in the Bible:
Oh yes, you shaped me first inside, then out; you formed me in my mother’s womb.
I thank you, High God—you’re breathtaking!
Body and soul, I am marvelously made!
I worship in adoration—what a creation!
You know me inside and out, you know every bone in my body.
You know exactly how I was made, bit by bit, how I was sculpted from nothing into something.
Like an open book, you watched me grow from conception to birth; all the stages of my life were spread out before you,
The days of my life all prepared before I’d even lived one day.
– Psalms 139:13-16 The Message
God’s works are perfect. God does not make mistakes. We are all – yes, all of us – a masterpiece.
Every life is worth celebrating.
-Ask, “How are you handling the diagnosis?”
This is where it is okay to say “sorry.” If your friend is really struggling, do say, “I am sorry you have to go through this grief, I am here for you, and I know soon you will be wiping the tears and experiencing great joy.”
–Tell the parents how beautiful their baby is! Babies with Down syndrome are some of the most beautiful babies. And they just melt in your arms. point out the cute button nose, and the beautiful almond shaped eyes. Make a big deal, reminding the parents that their baby with down syndrome is a baby first of all, and babies are irresistible.
–Tell your friend you are available if she/he needs to talk. You can admit that you don’t know what to say, but you want to learn along with them.
I know many people shy away from saying anything in fear of saying the wrong thing. Don’t be a stranger to your friend. Better to say the wrong thing but let them know you are willing to learn, than to look the other way and avoid your friend. Be assured, a true friend will not hold a comment made with good intentions against you.
Do you have a child with Down syndrome? Is there something that was said to you that was inappropriate? Is there something that was encouraging? What do you wish someone had said to you, or what do you wish people had kept to themselves?
So good, Ellen! Thanks for sharing!
Thanks Linda, anything you would add?
My daughter has other special needs and you hit the nail on the head with what not to say, especially the “special parents” comment.
The other comment that I’ve had people say to me that really bothers me is “God won’t give you more than you can bear.” This is really hard, especially when you have a 9 year old who is looking at surgeries 9, 10 and 11 in the next year. My answer to them is how much does He expect us (her and me) to handle before He decides we’ve had enough.
Or how did we get to be so “blessed” that we have to deal with all of these problems. Don’t get me wrong, my life is very good, but some comments people make are very cruel and hurtful.
Thanks for giving suggestions on how to help and what to say to these new mothers!
Tracy, how did I forget that! Actually, this is exactly something that I personally had to come to terms with. I was trying to convince myself of this, and my husband reassured me it is not a Biblical truth (this is taken out of context!). Maybe I need to write more about this! Thank you! I do hope everyone has chance to read your comment, because this is also such a common thing to say.
Ellen, your advice is so helpful. Thank you! (Now I just need to remember it and follow it!)
And be assured that what a friend needs most is not the perfect words, but your presence and support 🙂
THIS is exactly what I was talking about. Thank you, Ellen. Where I was stumped is what to say to create a space for a friend to mourn (This wasn’t my plan! I’m scared!) but I knew “I’m sorry” would sound like a rejection of the child. “How are you handling the diagnosis?” is really great and open.
I really like how you encourage people to risk making a mistake. As a mother of a child with special needs and someone who has experienced a lot of personal tragedy I would agree the “wrong” thing said by a person who loves me and is there for me, is easily forgiven and forgotten.
Great, wise and helpful post.
Alison, our conversation really prompted me to think this was important, so thank you! I had this post buried in my personal blog from a few years ago. amazing how even a few more years have given me more perspective!
You are spot on. I have a baby with Edwards syndrome and what I have realized is that people just need to be educated and made aware of this.
Sarah, you are so right!
When Christopher was born there were so many people in the room then when the Doctor told us he had Down Syndrome all of a sudden it was just me in the room with him, I started to cry and a nun walked near the room, saw I was upset came in looked at him and said to celebrate his life it will be a struggle but a joy. She was so right I wouldnt trade him for all the typical kids in the world.
Jennifer, yes! It is like suddenly a haze or mist surrounds you and you feel like in the middle of a dream. And a bad dream! Then, some time later, you look back and realize it wasn’t a bad dream, just unexpected. I wouldn’t trade my rascal either. Thanks so much for stopping by!
When my son Christopher was born there were so many people in the room but when the Doctor said he had Down Syndrome all of a sudden it was just me and him in the room, I started to cry but when a nun walked near the room noticed I was upset, came in looked at Chris and said” You should celebrate he will have struggles but he will be a joy”. She was so right, I wouldn’t trade him for all the typical kids in the world.
I do not have a child with DS, but I have a niece, the brother of good friend, and another friend with 2 children who all have it, so it has been a part of my world for many, many years. Right after my friend’s son with DS was born, her mom gave her a letter with a story about someone who bought a ticket for a vacation in Italy. She was expecting sunny beaches, impressive historical places to see, and her favorite foods. Instead, she landed in Belgium and was stuck there. It rained constantly, there were no beaches, no historical places to visit, and the food was dreadful. She was devastated. But eventually the rain let up and she started looking around. She realized that what she thought was a dreary rain was in fact nurturing thousands of beautiful flowers and green hills. It wasn’t Italy, but it was certainly pretty. She found that she liked the indoor swimming pools better than the beach, the food wasn’t so bad once you got used to it, and history was over rated. She wasn’t where she had planned to be, but once she got used to it, it wasn’t so bad and she found she kind of liked it there. That little story was the best analogy for my friend’s situation- it wasn’t what she had planned or expected, but once she could move beyond her self pity, it wasn’t perfect, but it wasn’t so bad, either. She has kept that framed letter on her wall since her son was a baby and she eventually adopted another child with DS from foster care because she couldn’t understand how his parents could not want that beautiful baby. It’s hard to know what to say, but could not imagine a more thoughtful or blessed gift to give a new mom and I have copied it a few times to share with other parents.
“Self pity” was not the word I intended to use there. I intended to use “despair”, but was talking to someone as I was typing and did not write what I meant.
I did not think twice about it. I had self pity…and despair, all of it! 🙂 Thankfully, that changed and now I am thankful for the gift I have in my child. Thank you so much for leaving such a thoughtful comment here Jodee!
Jodee, that reminds me of the poem “Welcome to Holland” which has the same analogy. One of my friend’s gave her son the name “Holland” as a middle name, because that poem really made a difference for her too. 🙂
Here is a link to it: http://www.our-kids.org/Archives/Holland.html
amazing! i will copy and paste this quite often, I know. T
thanks for sharing!
Not all of my friends know my baby has that extra chromosome, and actually i am not sure at this point who knows or not… as they dont know what to say, what to do , mostly they are just ignoring,I guess. not offering me the shoulder to weep on, dont say words to show they care about me and want me to feel better…
and actually I am looking for such articles to help them:)
I’d recommend them “do say” part of this article.
I believe “God gives special children to special parents.” and it makes me feel good when i hear. God doesnt give a burden more than we can handle.If we are given these special gifts, we must be special 😉
so i definitely agree with you that something works for me, may fail for you:)
Thanks for your comment! And yes, we are all different, different personalities and outlook in life. I would encourage you to come join us at the IDSC (International Down syndrome Coalition) https://www.facebook.com/InternationalDownSyndromeCoalition
My daughter’s third child was born with Down Syndrome. Shortly after Molly arrived a friend came to visit and said, “People are going to notice you and your children now, and I can’t think of a better Mother for them to watch.” I’ve often thought this was the perfect thing to say — and the best compliment!
Sharon, I think it depends on the person, this would not have been encouraging to me. I am not more gifted than the mother next door, and I already felt pressure on how I reacted to the diagnosis because I am a pastor’s wife. I could think of a lot better parents than me to handle a child with a disability, but that is not what God had planned for me, and now, 7 years later, I still know there is nothing special about me, this is simply my plan, and we do what we have to do. 🙂 But like I said, it depends on the person, I did not like to hear, “I am sorry” either (most people don’t) but I had a friend who wanted to hear that, because she said it was an echo of what she felt and it made her feel like it was okay to feel the way she did.
While my son does not have Down Syndrome he does have Autism. I know for myself the worst thing ever said to me was by a parent of a child with Down Syndrome who’s son sees the same OT as mine. One day in the waiting room I had my youngest child along with me. On seeing that I had a younger child then my son with Autism she said, ‘ How could you have another child after the other one is how he is.’
I’m sorry to say I had not a single thing to reply with. I was shocked. Just the statement of ‘after the other one is what he is,’ alone struck me dumb. What he is is the most loving kind and beautiful boy I know. What he is, is my heart and soul just as all my children are.
And while I know it’s hard to hear things like God chose you because your stronger or special when you maybe don’t see it or feel your nothing more or less then the next parent I do believe some children are luckier then others by being blessed with parents that have the understanding, or the willingness to learn about their child’s difficulty and do the most for them, with their unyielding love and comfort. There are going to be days when as the parent you are going to go to your room and cry and ask why, it doesn’t make you less, it makes you human.
Just to clarify, when I say some children are blessed to have understanding and or willing to learn parents, I don’t just mean parents their born to. I don’t believe having a child simply ‘makes’ one into a parent. I believe the nurturing care, support and love do, be it natural born, relative, foster or adopted.
Jean, I’m so sorry, that would be so hurtful. I can only imagine that mom was still grieving her child’s diagnosis, and her comment was more about herself than your child. At that time, she probably thought she could never have another child with a disability.
Eight years ago our daughter was born with Down syndrome. I had one friend that was babysitting our older daughter just walk away. And another friend gave me the god gave her to you because you are special. We still talk some. But our friendship has never been the same.
I think the thing that hurt the most was that my sister could not except that I had a daughter with Down syndrome. She lives in Kentucky and in eighty years has never meet Savannah. She would talk about everything else but her on the phone. It was like I never had her. So I just quite calling her. We have not talking in 4 years.
My mom was the best! The first thing she said after getting the news after her birth – was that we can still love her can’t we? And yes that’s what we have done. And our little girl is doing great.
The light at the end of the tunnel don’t have to be a train. I could be a ray of sunshine. All you can do is your best. And thats what we try to do each day. Some days are better then others. But at the end of the day when you give that little one a kiss goodnight. Just thank you had one more day to love the gift he gave you to care for. Because every life is a gift. Some are just more special then others!
I think we should recognize the difference in culture. The author may be right in one culture, but may be improper in another. For example, in another culture to say “I’m sorry” could be welcome as a sympathy, but “Congratulations!” could be considered as offensive.
My friend has a son with DS and I truly don’t know what to say to the parents. I just treat the son as with other boys, like I take photographs of him and his father, or of the entire family, as I do normally. In short, I show that I treat them normally, not too cool and not too warm, but I render help whenever I can. I think the parents are grateful for such actions.