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50 Ways My Life Has Changed Since Having a Baby With Down Syndrome

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Our world changed when we received the prenatal diagnosis. We were scared and filled with worry and didn’t think we knew how to raise a child with special needs. We took the time to get educated, and we surrounded ourselves with a wonderful support system. Although we didn’t expect to be on this journey, we embrace it and are thankful for our beautiful children, who bring so much light and love to our lives.

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As I travel along this journey with my family, my life has changed in the following ways….

1. I need a calendar.
2. I plan my day around therapy and appointments.
3. I laugh a lot.
4. I cry a lot.
5. I worry a lot.
6. I think way too far into the future.
7. I savor milestones.
8. I cry when milestones are met.
9. I want to make the world a better place.
10. I look both ways multiple times when I cross the street.
11. I feel my heart fill with love when I look at my children.
12. I watch my children sleeping and I listen to their breathing.
13. I avoid play places during cold and flu season.
14. I don’t take life for granted.
15. I snuggle my children too hard sometimes.
16. I think about the challenges my daughter will have to overcome.
17. I think about all of the good people in the world.
18. I think about all of the haters in the world.
19. I worry about the first day of school for both girls.
20. I get mad that my daughter has Down syndrome.
21. I love Down syndrome.

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22. I see the love between two sisters.
23. I go to bed too early.
24. I want my children to see the world.
25. I want my girls to take care of each other but live their own lives.
26. I love the attention my daughter gets when we go out as a family.
27. I get bothered when people stare.
28. I want to put my children in a bubble.
29. I’m a helicopter parent.
30. I detest the word “retard,” and if you use it, I will call you out.
31. I savor quiet moments.
32. I love when the girls scream in excitement.
33. I love my new friends who have my back.
34. I love my childhood friends who love me no matter what.
35. I think about if my daughter with special needs will find a partner and if she will get married.
36. Since giving birth, I can’t jump on a trampoline because I pee my pants.
37. I spoil my children.
38. I love that my daughter only sees her sister and not Down syndrome.
39. I love when the girls wrestle and play dolls together.
40. I never expected my life to be filled with so much love and gratitude.
41. I want to run up to families who have a child with Down syndrome and tell them that we are on the same team.
42. I cry watching commercials.
43. I admire bands and celebrities who take their time to appreciate our children.
44. I find it really hard that the girls are so close in age.
45. I love that the girls are so close in age and that they enjoy the same things.
46. I am tired.
47. I want my daughter to know that she has filled my heart with love since the very beginning.
48. I love that the world is making shifts — inclusion, acceptance and seeing the ability.
49. I’ve learned that beauty comes in all shapes, sizes, colors, religions and abilities.
50. When I was growing up, I knew I wanted to get married and I knew I wanted a family. I never expected my life to take the turn that it did. An unexpected diagnosis. An unexpected journey. We hope and pray for healthy children and a journey that doesn’t involve trials and tribulations. We hope for the easy road, one filled with flowers and beauty. We have visions of the perfect family, the white picket fence. We don’t think about how life may take us down another path, one we never expected or hoped for.

The journey we were presented with was at first too much, too scary, filled with uncertainty, fears and worry. We soon came to realize this was the plan, this was our journey, our own personal story we get to share with others. We soon came to realize that as a family, we will climb this mountain, we will take in all the amazing and beautiful moments. We’ve been blessed with two healthy and beautiful girls. We’ve been given a life filled with so much love, light, joy and happiness. Our plan took a slight curve, but let me tell you, I wouldn’t change the journey, I wouldn’t want my life to be any different, I wouldn’t want the path with no bumps, no hills, no stumbling blocks. This is our life, our family, our story.

Follow this journey on A Perfect Extra Chromosome.

Originally published: August 7, 2015
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