Sunday, July 28, 2013

Moments of our Lives (Our Kiddos' Bucket List)

Moments of our lives (Our Kiddos' Bucket List)

All four of our kiddos, including Kayli, have been given a fatal prognosis in at least one point of their life.  It has made our family look closer at how we choose to fill the days of their lives.  This is a list of things we wish for our kiddos to experience before they pass on.  It is important to us, to give them every opportunity to share such joys while they are in our care here on earth.  Our kids taught us it is the simplest joys in life that should be celebrated. If you can think of any other lifetime moments that you think a child should experience, please feel free to comment, and we may add it to their list!!

1.  Sit on Santa's lap
2.  taste/eat candy
3.  go to a pumpkin farm
4.  ride a pony
5.  have their own bedroom, decorated personally for them
6.  dance
7.  watch fireworks
8.  go in an ocean
9.  fly in an airplane
10. get tickled
11. fall asleep in Mommy/Daddy's arms
12. pet a dog
13. dress up for halloween
14. get rasberries on their tummy
15. feel rain on their face
16. smell a flower
17. take a train ride
18. blow and/or catch bubbles
19. lay on Mommy's chest
20. dress up
21. build a train set
22. swing
23. go for a walk surrounded with God's beauty
24. watch fish swim
25. see flowers blooming
26. throw a snowball
27. give something of theirs personally to charity or someone in need
28. play in a pool
29. watch a parade
30. toast a marshmallow
31. put up Christmas decorations/decorate the tree
32. go to a drive in theater
33. be a part of the crowd at a sporting event
34. watch a bonfire
35. see a sunset and sunrise
36. have a birthday party
37. color and find Easter eggs
38. take a bubble bath
39. do a good deed for someone else selflessly
40. receive mail
41. color in in coloring book
42. Go to a zoo
43. go to the circus
44. wish upon a star
45. get kissed on the forehead
46. hold hands
47. laugh
48. see a rainbow
49. feel loved unconditionally
50. make a snow angel and build a snow fort
51. see/hear a live band play
52. see a movie at a drive in theater
53. go to a car show


  1. Go to a petting zoo, ride a bike, fly a kite, bake cookies with mom, have family game night.

  2. lay in the grass and watch the clouds, play in the rain, make a snow man,

  3. I just saw your video and there aren't words to convey how it makes me feel. My own daughter will be three in April. During my high risk pregnancy she was find to have the markers of Down Syndrome. Family and doctors alike insisted I find out via amnio so I could "make a decision". I explained I had no decisions to make. I became pregnant when I'd been told after a violent assault at age 12 I couldn't have children. God made the decision to give me my daughter. I was going to love her however God saw fit for her to come into this world.

    For the remaining Six months of my pregnancy the people arpund me suffered with worry while I was content. My daughter was born perfect as she would have been with it without Downs. My daughter just happened to not have it. She did spend afew months in a specialty hospital, transferring there from the NICU. She simply refused to eat. She had an NG tube placed (learning to place it was awful I hated causing her that pain in her throat) and after a few weeks the doctors INSISTED she have a G tube surgically placed. I refused. This particular hospital had the highest rate of patient G tube surgeries and they PUSHED to have the surgeries done. However, they also refused to allow us to try something as simple as a different sizes nipple. They only used the thin small nipples and my daughter did try to breast feed nut just lost interest after less than two minutes. I suggested we try a larger nipple. They refused. When my mother brought one in they treated it as contraband! We were made to sign a behavioral contract. The place was awful. Our second day there a child life specialist dropped a baby. I wasnt leaving her anyway but after that I refused to sleep outside the room where I had been sleeping while her father stayed in the room.

    Eventually we were cleared to bring her home on the NG tube. Within FOUR DAYS of being home I removed the tube. She was Sucking on bottles like shed been doing it her whole life. All happened when I have her a large nipple bottle. I was thrilled but also angry. We could have been home weeks before. Those are days well never get back. Like her first night alive, my IV was misplaced and I received no pain meds after my c-section. I ended up in the ICU. Well I was TOLD I was going to the ICU where the babies were not allowed. They took her to the nursey as they told me I was about to go to the ICU. See they had pumped with so much dilaudid they thought i would go out. My IV wasn't in and my arms were already swollen so they didn't know the IV was blowing. All the meds they gave me I got none of. The physical pain I felt after the cesarean was unimaginable. After they took my daughter I stoppedc trying to focus and was in snd out ofv awareness untilI fell asleep. When I woke up, I realized they'd never taken me tobthe ICU! I was in the labor and delivery recovery area. My daughter had spent her first night in this world alone. All because I was TOLD I was going to the ICU and didn't. The next day my daughter was placed in the NICU. My chance to hold her her first moments were gone.

    I cannot imagine going through the mistakes you have. You're strength is amazing. I just can't imagine.

    If I'm not being rude in asking, what were your sons prognosis'?

    I wish you and yours the best. Kayli truly is an inspiration and so much more. I cannot imagine beingtold my daughter was gone and having her come back to us.