What Every Parent Facing a New Down Syndrome Diagnosis Should Know

When I was around 20 weeks pregnant, an ultrasound scan showed my baby had several markers for Down syndrome. When my daughter was born, her diagnosis was confirmed.

Looking back, it took me a while to see my baby past her diagnosis. I was constantly “aware” my baby had Down syndrome. When people expressed she was beautiful, I wondered if they could see “it.” As she got older and it became clear she would be behind in her development, her diagnosis seemed ever present.

I cannot look back to a specific time and say when things changed, but I do know eventually I didn’t care my daughter has Down syndrome. I didn’t care she was behind in development. I didn’t care about the many things I worried about when we first had a confirmed diagnosis. I’ve changed. She changed me.

I believe my daughter was instrumental in teaching me to love unconditionally.

She’s a feisty, charming and determined 10-year-old pre-teen. I can say Down syndrome is something in her I love and appreciate. The cliche phrase, “If I’d known then what I know now,” rings true. I wish I’d known as a new parent that the sadness over the diagnosis was part of the journey, yet thankfully most of us move past our ignorance of disability and towards love and appreciation of who our kids are and what they bring into our lives. There is a reason so many of us who parent kids with Down syndrome say our kids have changed us for the better. There is a reason we learn to love big and fierce and why we move mountains for our kids.

For any new parent facing a Down syndrome diagnosis, you are not alone. Many of us have gone before you, and now that our kids are older, this is what we want you to know:

1. “You can do it, if you want to. Single or not. Don’t listen to anyone, even the many doctors, if they tell you different. I did it, alone, and I love where I am, where she is, how she has grown, who she is. I know who my guide was and I would do it all over again. I knew nothing about Down syndrome when she was born. The first year and a half are a blur, she will be 28 years old next month.” — Natalie B.

2. “[You] are blessed beyond explaining by the knowledge and resources available now. Our daughter with Down syndrome was born in 1961. My husband and I were very recent college graduates. Even though we lived in a large city, there were no helpful resources available. We had two choices: huddle up at home and with God’s help do the best we could. Or say, ‘Hello world! This is our daughter and we are going to do everything in our power to help her be all God means her to be.’” — Alice P.

3. “I always remember telling myself (and now new parents) that whatever feelings they feel, positive or negative, are OK. Because most of them will be temporary. There will come a day Down syndrome will not be the first thing you see when you look at your child. And you’ll both be fine.” — Ashley O.

4. “Remember that just because someone graduated medical school, doesn’t mean they know it all. So if you are informed of your child’s diagnosis by someone with sorrow or doubt in their voice, I urge you to dismiss them as an ignorant fool instead of giving any weight to their opinion. Your child is exactly who he was meant to be! Your child is a unique and precious soul, who has just as much right to this world as any other kid. Your child can have a career, get married, be a writer, anything. Not even just that… those 8 pounds staring back up at you will bring out a love and tenacity and fight in you that you never knew was there. This blessing you’ve been given is your strength. Maybe it doesn’t seem like it now, but I guarantee you that this tiny person will change everything for the better.” — Britt S.

5. “I would have wanted to know that he’s just like our other boys; things just take a little longer to master. He’s just a baby; he needs the same things. Outreach to your local Down Syndrome Association because they will become your greatest friends and knowledge gurus. And this is your chance to enlighten others to this great gift that is your child.” — C.

6. “[You] just entered a really cool community. T21 families are awesome and super welcoming.” — Jeannie K.

7. “All of our early intervention therapists were so vital in preparing my son to be the boy he is today. Get involved early with early intervention services, even speech therapy, because having a child who can communicate effectively in this society is so vital for long-term successes.” — Paul L.

8. “If I could go back, I would enjoy my son as a baby instead of focusing on his having Down syndrome and trying to constantly work with him to keep up with other babies. He was a sweet little baby with a beautiful temperament. I had no clue what was in store. I have met amazing teachers, parents and individuals with Down syndrome. I would not change my life. My son is now 40. He is fun, creative, confident and enjoys life to the fullest. I am a better person for having my son.” — Evelyn S.

9. “Parents should know of resources. Most of us have found out through word of mouth. If early intervention has therapy for parents, do it. P.S. Every OB needs sensitivity training for the birth!” — Selissa J.

10. “It will be OK, and they will teach you more than you teach them. You will need to be a Momma Bear to stand up for them, to get what they need. Most of all, you can do it. They still eat, sleep and poop, and they are your child and need your love.” — Robin

11. “Enjoy your baby — live in the moment. Try not to worry about the future. It will come soon enough.” — Lisa B.

12. “Enjoy your baby!” — Mara B.

13. “It’s OK to be sad or mourn the child they thought they would have. Everyone was so positive and optimistic with me when we received the unexpected diagnosis, but I wasn’t ready to hear that… I just wanted someone to tell me that is was OK to be sad. Of course, now I wouldn’t change a thing about my son, but I think my initial feelings were valid and part of my process.” — Julie L.

14. “He was the child I didn’t even know I needed. He is my best teacher and greatest blessing! [He will be] 21 next month.” — Shannon R.

15.“Don’t be scared. It’s going to be the best experience of your life! Even with any challenges you may be faced with, you will find that your child with Down syndrome is amazing in more ways than you ever imagined. We can say this to you and you may not believe it now, but it’s true.” — Bonnie M.

16. “In the year following your child’s birth, you will learn so much and grow immensely as a person. Your baby will awe you every single day. You learn to enjoy every milestone, experience and life in general on a moment-to-moment basis. I wish I would have known how wonderful this life is!… I would educate hospital staff on how to inform a family about Down syndrome.” — Amy W.S.

17. “It’s OK to feel scared and cry. Your child will lead you on a journey you would have never imagined. The support system/friendships you grow into, because of them, is amazing. These friendships become family. Don’t underestimate your child. He or she is capable of so many great things. Life will be different than you once expected, but it will be an incredible journey.” — Mariely G.

18. “You are not alone in this journey. You have so many others who are walking this same journey. Though every child is different, there is definitely another child very similar to yours whom you can learn from. You will have so much support if you accept it and embrace it. It is what they have, not who they are.” — Debbie T.

19. “It’s so great once you realize you’re not alone, and there are people nearby who understand what you’re experiencing.” — Lainey M.

20. “Do not listen to the negativity. I was told by doctors that my daughter would not be able to do much and how floppy she would be. I was also asked if I thought about aborting [during] my pregnancy. Nobody should ask a mother that just delivered a baby with Down syndrome if they thought about aborting. My daughter was in the NICU for a couple of months, and I was so scared to bring her home because of the negativity. She is now 1 and thriving. Evie is doing things that all babies do, and she has taught me so much about myself. I am stronger than I ever realized and feel so blessed to be this little girl’s mom. I did it my way and didn’t listen to those that said Evie would not do much. I never thought I would be on this path, but I would never choose a different one. I feel like I am one of the lucky ones. There is amazing support all around you and never feel like you are alone. There are several families that have been blessed to raise a child with Down syndrome. Take it one day at a time!” — Natalie O.

21. “It’s OK to cry and be scared. But make plans to have fun. My girl is 3 now. She makes me laugh every day with her mischief. Her courage is incredible. She is a climber and prankster. She is affectionate and gives the best hugs. She is an absolute joy, as all my children are. And she is so loved by friends, family and especially me.” — Kim L.

22. “Yes, it is scary and nothing like what you expected this journey to be, but this will pass and you will know the most amazing joy every day. I was sad and angry at first, but this child of mine makes me laugh every single day. She is everyone’s cheerleader, she is completely amazing and loving. Yes, she gets angry just like any other person, but it never ever lasts, and I work to be more like her. She has the biggest all-forgiving heart of anyone I have ever met. Yes, there will be hard moments or days, but it is so very worth every tear to be a part of that child’s life.” — Cim T.H.

23. “Never compare [your] child’s milestones to any other child. Every child is different and will do things in their own time with support. You are your child’s best advocate and you will know your child better than anyone else. Do what you think is best for them and your family, trust your instincts. Most important of all, enjoy every minute with them, soak it up and take lots of pictures. One day you will look back at those pictures and show your child how much love they brought into your life. The journey is definitely worth it!” — Liza K.

24. “This child will teach you more about unconditional love. He/she will show you the world in a whole new way.” — Chantelle K.

25. “The good days will far outweigh the bad. Find a community, there is lots of support. Check out the article, ‘If People With Down Syndrome Ruled the World.’ And learn all you can about Down syndrome.” — Andy S.

26. “This life will be complicated but beautiful! It will change you in the very best ways. Your child will teach you far more than you will teach them.” — Amy W.