The next concern I had was how my mom was going to handle our news ... She was driving down from her home and didn’t know anything yet! She had been absolutely crazy in love with Kristen and had a very tough time with her loss, too. When she walked into my room hours later I was holding Sean in a sweet little outfit Kim had gone to the gift shop to buy for him. Grandma was holding an “It’s a Boy” balloon and she looked so happy ... she said “Ooh, what do we have here?” and I said, “We have a little boy, but we have some problems.” She said, “WHAT?!” as she reached to take him from me, and I said, “He’s a little Downsie.”
She hugged him close and said “Oh, but he’s sooo cute! Who couldn’t love him?!” And I will cherish my mom forever for that moment, because it made the whole situation so much better!
A short while after that I noticed Sean’s skin looking a little blue-grey color and thought he might need some oxygen. I called for the NICU nurse to come and see him ... she took him back to the unit and they ran some tests on him, and put him on some IV antibiotics to be safe. His blood was very concentrated though so the neonatalogist put an IV line in his umbilical vein to remove a small amount of his blood and help it circulate better. Sean also had a clubfoot that had sort of taken a back seat in the delivery room, but the orthopedic doctor came and put a cast on to try to help straighten it out, so by now Sean was pretty wiped out and didn’t want to eat. That’s fairly common with little babies with Down Syndrome, so the nurses put in a feeding tube and Sean got his formula while we cuddled him.
I was talking to Sean’s daddy often throughout that first day and we were both bonding more and more to Sean as the day went on ... Edward didn’t even tell anyone at his wedding that Sean had been born because he didn’t want to cry, but we were both very upset when we thought he might need oxygen, or possibly had an infection, and he was becoming more and more “ours.” When Edward came in after his wedding and got to see Sean looking pinker and cuter, and saw how sweet he was, he was finally able to hold him close, and rock him and smile! My mom stayed with me and Edward went home, and we talked on the phone nearly the entire night! We decided that Sean had come to the right family, and that we would enjoy life right along with him as he grew up! We live on six acres with hundreds of cypress trees and an alligator pond, and have a lot of pets and wildlife so it was going to be the perfect place to bring Sean up!
And yes it has been! Sean is now fifteen years old and the coolest kid in town! He has a twelve-year-old sister and they adore each other and tease each other just like other siblings. Sean reads great and loves to play computer and Wii games. He runs the remote control and the satellite programming like a wiz. He rides the school bus and loves his CD player. He calls us the Shrek family “because we live in a swamp.” I am Fiona, Edward is Shrek, Sean is Puss-in-boots, and his sister, Amy, is Donkey! Now my dear mom has very advanced Alzheimer’s and lives with us and Sean calls her “the Queen” ... He says, “Oh Arlene, you are so sweet!” because she doesn’t answer to Mom or Grandma anymore. But she and Sean still have a very close bond!
We have taken Sean and his sister on a family cruise every year, and for Sean’s fifteenth birthday we went to New York City to see Broadway shows! We saw Phantom of the Opera, or as Sean calls it, Fan-Tom of the Oprah, and Mary Poppins. Sean got our whole family the VIP tour of the Long Island Railroad Train and rode with the conductor the whole way in to NYC from Long Island. As a little boy he was on the Ricky Lake Show ... he loves Miley Cyrus, Demi Lovata, Dakota Fanning, High School Musical, Hair Spray, Peter Pan, Wizard of Oz, Mamma Mia, and Nick TV... and he can quote most of the scripts for everybody in shows and movies! Sean says “I love that man!” about Jesus, Santa Clause, and President Obama. He still loves Barney and the Wiggles and he is very gentle with babies and little children. He is in the ninth grade now and he says he wants to be a “baggie” at Publix. He has the biggest heart and gives awesome hugs!
We are so thankful to have Sean! And our life is very blessed! Please help save the downsies!
Thank you sincerely, Debbie Moore
(Part 1) | Part 2