Sometimes when in the stress of pregnancy post-diagnosis, a negative comment can send us reeling, and may actually drown out the many positive comments we hear. However, there are extraordinary people out there. People who rise to the occasion and give a piece of themselves to give genuine, loving support. Focusing on their words and their actions, their support can help build our confidence and reinforce the knowledge that the world is a welcoming place for our children.
Sometimes that support comes from friends and loved ones who dive in to learn more about Down syndrome and the available resources so that they understand our children a little better and how to help them achieve their potential. Other times that support comes in the form of friends visiting the hospital and bringing blankets, stuffed animals, and candy to the Newborn Intensive Care Unit. That support can also include comments that welcome our children into the world, like the nurse who says "Congratulations! You're baby is precious," or comments that shape our understanding about disability, like a friend who shares, "My cousin has Down syndrome, and she's an important part of our family. We love her."
Friends and family can read more about how they can offer this kind of positive support in our booklet, "Your Loved One Is Having a Baby with Down Syndrome."
See also: Sharing the News with Friends and Family chapter in our book, "Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome."
The Best Things I've Heard as a Mom of a Child With Down Syndrome by Maureen Wallace
Sample Letters of Thanks
Below are sample letters of thanks for friends and family who have offered particularly meaningful support during your pregnancy, one for a present pregnancy, and one for a past pregnancy. Edit as much as you need to match your circumstances.
Current Pregnancy Letter of Thanks
As you know, I am currently __ months pregnant with our baby boy/ girl name. I was upset when you told me (or I found out) that ____ has Down syndrome (and name other issue if applicable). We have been adjusting, and learning, and hoping.
I have had a tough time with the reactions of some people, and that has been difficult. But receiving amazing support from others has helped me so much.
You are one of the people who helped me. (Explain how this person helped you. Examples: When you told us the baby has Down syndrome, you said, "...." When I told you the baby has Down syndrome, you did . . . . Or, alternatively, in trying to envision our future, I remembered . . . (something about your memories of that person or her family that help you now). Try to provide some details.)
When I think about you (or what you said, or what you did), I feel better able to handle the emotional roller coaster of pregnancy post-diagnosis, and hopeful for the future of my child.
You have made a difference to me, to my baby, and my family. I will never forget your kindness. Thank you.
Past Pregnancy Letter of Thanks
As you may remember, I received a prenatal diagnosis of Down syndrome (and other medical issue) last year (or other date). I gave birth to my beautiful son/ daughter Name on Date. I was upset when you told me (or I found out) that ____ has Down syndrome (and name other issue if applicable). The remainder of our pregnancy was an emotional roller coaster, but I am happy to report that (some details about your child).
During my pregnancy, I had a tough time with the reactions of some people, and that was difficult. But seeing the amazing support from others helped me through that time.
You are one of the people who helped me. (Explain how this person helped you. Examples: When you told us the baby has Down syndrome, you said, "...." When I told you the baby has Down syndrome, you did . . . . Or, alternatively, in trying to envision our future, I remember . . . (something about your memories of that person or her family that help you now). Try to provide some details.)
When I think about you (or what you said, or what you did), I feel so grateful for the support you gave me.
You have made a difference to me, to my baby, and my family. I will never forget your kindness. Thank you.
Reflections from parents about the comments, words, actions, or attitudes of those who gave the best of themselves and in turn helped them cope or look forward to a bright future.
(Note: We recognize that some things that bring comfort to some people may not help others because of the diversity of the personalities and beliefs of our expectant parents. Supporters should tailor their comments and support to match what they know about the personalities of the expectant parents.)
From Jess, talking about the support she received from another friend whose child has a disability:
Another comment from a mom with an autistic son: “No matter how they turn out, they are still a blessing.” That was a nice thing to hear.
From Jeff, describing how a conversation with a friend made him feel happy:
I called a close friend the day after my daughter was born and told him the news that we had a baby girl. We talked for a little bit about how it was going to be nice to have our children playing together growing up together (he had a child of very similar age). After awhile I said, “I should tell you that our daughter was diagnosed with Down Syndrome”. His response was honest and immediate: “so?” He continued on with the conversation as if the information carried very little meaning and went on to talk about all the other things we would look forward to with our children. I’m not sure if he knows it was the first time that someone didn’t have the hidden, “I’m feeling sorry for you remark”. Still makes me happy to think about.
From Megan, saying she appreciated the support from her medical providers and friends:
We had great support. From our genetic counselor who told us to cling to each other, then called back the next day with all the “to do” information, to friends who just told us that they love us and that they love our daughter, I think we really lucked out. Our doctors were wonderful.
From Lisa, talking about the medical professionals and friends who helped her:
We had so many great friends and medical professionals in our lives — and some not so great ones, too — but my favorite was when I called a friend far away to say, “I’m pregnant …. and my baby has Down syndrome” and she was relaying my words to her husband in the background as I spoke them. Before she could even say anything he said, loudly, for me to hear: “A baby is coming. That is a beautiful thing. Congratulations!”
From Amy, describing how her outstanding medical professionals and teachers have made a profound difference:
Prenatally, the Down Syndrome Clinic at Children’s Boston was a real lifeline – they provided my first opportunity to talk to another parent and gave us some great resources.
We have received stellar care since Abigail’s birth – 8 years of caring pediatricians and specialists all with one goal in mind: keeping her healthy and happy. With new providers, I make sure to introduce our preference for people-first language, and this has really enabled me to feel that my child is understood as a person when they use her name or “other kids with Down syndrome” instead of “my Down’s patients.” I feel like younger docs she sees are less resistant to changing their language, and that definitely enters into who we select for her care.
Another key source of support has been Abigail’s teachers and peers at school. This year especially, we have a true partnership – the teacher and aide write daily to us about what is going on in the classroom and ask us questions about modifications for assignments coming up. Her reading teacher sends home next week’s spelling list on Friday so we have the weekend to begin to get familiar with the words before instruction starts on patterns etc … Abigail has good friends to play with on the playground or during other social or group reading times. The end result is a huge improvement in reading and math this year and true engagement for both Abigail and us in her school community.
From Sarah, saying it was very helpful when her mom jumped into research about Down syndrome:
One of the most supporting things was when my mother asked to borrow some of the materials we had received about Down syndrome then brought them back a week or so later with notes. She had gone over the various resource lists, made calls and let me know that when we were ready we should call XXX to start early intervention, where the nearest Down syndrome clinic was, and more. She did the early legwork for me that I wasn’t ready to take on.
From Heather, talking about how her dad made her feel comforted by offering compassion and confidence:
My dad said that he felt bad for me but that he knew I would be a great parent. Coming from a guy who usually says things like “Pull yourself up by your bootstraps, honey” and “Oh, it’s not so bad," I really appreciated that, just for a minute, he just got in there and felt my pain with me. He then asked me what I needed, what he needed to do, where he needed to be, what he needed to know. Another break with his usual MO … he didn’t tell me what he was going to do but he let me take the lead. He didn’t know it at the time but he was communicating to me a key thing I really needed: “You got this, honey! I believe in you” His support made me really believe in myself and how important is was that I believed in myself.
From Stephanie, describing how her spiritual leader offered wise advice that acknowledged her son's individuality:
One of the best things anyone said to me was our bishop. I remember being distraught and not knowing what it would mean to have a son with Down syndrome. Our bishop wisely said, “Your son is responsible for all he can learn, and you are responsible for teaching him.” I really loved this more and more as the years went on because he really acknowledged Andy’s individuality, humanity, and ability to learn and grow.
From Missy, telling about a customer who gave her a thoughtful card:
A customer of ours sent me a congratulations card with the words “Gifts come in many packages! Congratulations on your new addition.”
That meant so much to me, for some reason – I will never forget his kindness and perspective.
From Nancy, explaining how her medical team was prepared ahead of time and created a party atmosphere when her daughter was born:
My obstetrician has a busy practice, and pregnant women see all of the doctors as a rule. But post-diagnosis, she kept me to herself, and said she’d deliver the baby whether she was on duty or not. The cardiologist was kind and gentle, and set up a meeting with cardiac lactation consultants. They and my perinatologist were so supportive, as were their support staffs.
At Gabby’s birth, the extra medical people were excited and it was a party atmosphere. Hugs and congratulations flowed freely. The next day, when all was quiet, I went to the nursery, looking for a nurse to give me my baby. Instead I saw her getting an echocardiogram. The cardiologist looked up with a grin, waived me in, and said congratulations, that Gabby was beautiful.
So many other people were wonderful – our parents, our siblings, our neighbors, our friends. It’s so easy to replay in my head the negative comments over and over, but they were outnumbered by the positive comments and support.
From Mark, discussing the positive words of support from his pediatrician and older brother:
Our pediatrician came into our hospital room after examining our daughter in the nursery. He began by saying, “Well, let me first say, you have a healthy baby girl.” That very first sentence framed how she should be viewed and referred to for me.
My eldest brother, who is normally a very stern person, perhaps because he is a surgeon, was entirely caring and supportive, sharing how he had treated individuals with Down syndrome, had seen them with their families, and told us we were going to be fine because we were loving parents.
From Ellen, describing the important support she received from her husbands and medical providers to help her welcome her son:
After we had my son’s diagnosis confirmed when I was 16 weeks pregnant, my husband and I went home and sat down and talked things out (and I cried a bucket load!). The first thing my husband said was “I think this will make us better people, and I hope it will make us better parents." The thing that hurt me the most was the idea of the social isolation he might experience – I just didn’t want him to have a lonely life. The second thing my husband said that night was “this is just a baby that needs extra love — and we can do that”. It meant so much to me to know that my partner not only had full faith in our ability to parent our son, but it also didn’t change his desire to parent our baby. We had some bad experiences with healthcare providers and also some really great ones. The best were the ones who took their cues from us – we were just looking forward to being parents and they embraced that and didn’t treat us differently – the worst felt they should warn us about every negative aspect of Down syndrome and asked intrusive questions and made all sorts of assumptions about our decision not to terminate. What really helped too was our wonderful friends, who didn’t pity us at all, but celebrated with us, and visited us and told us we would be great parents.