21 Things I Want You to Know About a Down Syndrome Diagnosis


Has your baby just been diagnosed with Down syndrome? First of all, congratulations on your pregnancy or the birth of your beautiful baby. I’m also a parent of a child with Down syndrome, and here are 21 things I would like you to know:

1. You may be feeling shocked, scared and alone. It’s OK, so did we. It will pass. What you may be feeling now is transient. Your life has changed for the better, you just don’t know it yet.

2. Your baby may be more like you than different.

3. There is no “one size fits all” with Down syndrome. Your baby will be unique, beautiful and very much their own person, just like you.

4. Your doctor may present a negative view about Down syndrome and paint a bleak picture. I promise you that life with a child with Down syndrome is not bleak. Far from it. It’s bright. Very, very bright.

5. You might think the other children in your family will be impacted in a negative way, but they will love and accept their sibling and may be changed in ways that will make you burst at the seams with pride.

6. You might have to look within yourself and be open to transformation, because your baby might transform you and open your eyes to a new world.

7. Your baby may have some health issues associated with having Down syndrome. I know it can sound scary, but medical treatment is excellent these days. Your baby may have no issues, but you will have help at hand either way.

8. Your baby might take longer to reach milestones, but they’ll teach you patience, appreciation and courage along the way.

9. You might become part of a community of other parents and therapists who will be an extension to your family. They can support you, celebrate with you and grieve with you. They will be with you always.

10. Your marriage or partnership could become stronger. You will grow together and be challenged. You will bond over the baby you have made together. You must be strong and you will be.

11. Your baby will amaze you each and every day. Trust me.

12. Be proud when announcing the birth of your baby. Friends and relatives will hopefully take your lead. There might be negative comments that will sting and hurt, but hold your head high and don’t let anyone steal your joy.

13. You may have to reach out for support when you feel overwhelmed. Take one day at a time and enjoy your baby.

14. Don’t look too far into the future. It may seem like too much to think about, so just focus on the now.

15. I believe there’s never been a better time to be born with Down syndrome.

16. Your baby will grow into a child who will go to school and may excel with support in place.

17. You might look at other kids with Down syndrome with the same wonderment as your own child because you know how hard they have worked to achieve their milestones.

18. You may look back at the time you found out your baby had Down syndrome and wonder why you were so sad.

19. You never have to be afraid to stand up to a medical professional who may have a poor bedside manner — ever.

20. Remember that “comparison is the thief of joy.” You might get caught up in comparison, so trust your child’s own journey.

21. You can do this. I believe in you and need you to believe me, too. Your baby with Down syndrome may be the best thing to happen to you. Have faith, dream big and love your new life.

Ange Longbottom, baby with parents' hands

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