31 for 21 Day 31.. 21 Things about Down Syndrome

Well as the 31 for 21 Challenge comes to an end I wanted to share 21 different things about life with Down Syndrome that pertain to my life.

1. Down Syndrome is NOT something to say your sorry about to new parents. Remember that at the beginning the child is just an infant that will require the same needs as any other child, if there are not other medical needs.
2. Down Syndrome is also called Trisomy 21 because the 21st chromosome has 3 cells.
3. Down Syndrome used to be considered a curse to many, and today I truly believe its a blessing.
4. Down Syndrome can be scary. Anything that is new and uncertain is scary.
5. People with Down Syndrome are not "always happy". My guys get frustrated, goofy, sad, adventurous, and misbehave just like my typical children do.
6. If you ask my children what they think about having twin brothers with Down Syndrome, they will tell you they think they are pretty cool. They don't see the disability, they just see their brothers.
7. Quote from my daughter Tristin "how are they different?"
8. Quote from my daughter Camille "they are hard workers and always have something to do"
9. Therapies do not have to be a bad thing. Not only do they benefit your child but you too.
10. I have become a Down Syndrome stalker. I love looking at new babies or children and interacting with adults with Down Syndrome. They are beautiful people.
11. Your life will be forever changed for the better, and that's probably not what you would have thought in the beginning.
12. If your pregnant with a child with Down Syndrome and considering an abortion, please remember there is a waiting list for infants with Down Syndrome in the United States. They are valued people and in demand.
13. Down Syndrome is pronounced just like that..NOT Down's Syndrome.
14. Here's a tip to PLEASE remember: People First Language please. People with Down syndrome are people 1st. Instead of “a Down syndrome child,” or "the Downs twins" please say “a child/individual with Down syndrome.” Down syndrome does not define my children..it's just a part of who they are as a whole.
15. Finding support is a major thing to understand your rights and regulations as a parent of a special needs child. Be sure to find support either locally or online.
16. Identical twins with Down Syndrome is VERY rare, and if your reading this blog and know of someone please put them in touch with me. pookeymom@msn.com
17. The Arc is a great organization to help support you. Each state has on and many many counties have one. Here is mine: The Arc of Jefferson County
18. People with Down Syndrome are not always classified as Mentally Retarded. Just like typical people, there are different degrees of learning ability.
19. Some days I wonder if its really that they have to many genes or we don't have enough. What would the world be like if we all loved and lived as people with Down Syndrome do?
20. Its encouraging to me to know that some people with Down Syndrome drive cars, hold great jobs, they get married and have families, they attend college, and much much more.
21. I thank God each and every day for choosing me to be the mommy of two amazing boys both with Down Syndrome. What did I do in my life to have deserved such a blessing :)

Thank you for following along this month as I tried to bring some awareness to my readers about Down Syndrome. If you ever have a question, a comment, or need more information about Down Syndrome, please feel free to contact me. I'm always up for good conversation about a topic so near and dear to my heart.

You Tube Video of twins with Down Syndrome

A fellow blogger friend Maggie from Take a Walk on the Happy Side: Down Syndrome Awareness, had a reply to one of her recent posts that was very interesting to me and I wanted to share it with anyone else who may be interested. Maggie is one of the few people I have found online who also has identical twins both with Down Syndrome. If you are a reader of my blog and you know of any other people out there that have twins both with Down Syndrome and you could share their blog with me please do, we are so very rare, and its encouraging to find others who may be traveling the same path.

Day 7 and we're FINALLY home from hospital

Today, (Tuesday) we finally made our way home. We are on steroids and albuterol treatments three times a day for the next week but by golly we're home. Now its time for me to get the house back in order after a week away....ugh!!

Here's one last photo of Caleb rocking in the chair before we left





Glad to be home!!

Day 6... one down, one more to go

Tonight Isaac got to come home at 8:30pm. He had to be off the oxygen for 24 hours before he could be released and the doctor felt bad releasing one and not the other, but he had not reason to keep Isaac. So Tom took him home and let him sleep in his own bed and then brought him back in the next morning.

Here are some photos from day six:

Both boys IV's stopped working today so they were free to get out of the bed and put on their shoes and play on the floor for a bit. Here's Caleb reading the book "The Wheels on the Bus"


Here's Caleb asking to watch Blues Clues for the 30th time in a week:



Here's Isaac saying his good-byes to brother for the night, he has that look like YEAH I'm outta here:



Here's Isaac blowing kisses before they left:

Day 4 in hospital....

Today was a better day. Boys watched ALOT of Dora and Barney, they have a much more productive cough and they seem to be eating and drinking a little more. Today was 80 degrees outside so it was hard to see the nice weather and be cooped up inside. The poor lil guys keep signing "car" they wanna go home. We got them out of the cribs today for a few minutes and walked them around the hallways in the wagon, so it was nice to do something with them today outside the room. Camille and Elijah stopped in for a visit and later Tristin came and played with them too.

Can I just say what wonderful friends and family I have. My friend Kristen has helped us so much with the older kids and my mom and sisters have all pulled together and been there for me when they can. It gets really boring sitting in the same little room for so long with nothing to do. I love the visits!!!

Here are some photos from today:

Wagon ride to visit Big Bird


Caleb's crabby face


Watching TV together


Visit from Camille and Elijah (Elijah spilled drink right before photo)



Caleb's nap

Day 3 with twins in hospital

Today we are trying to keep the boys entertained a little more. They are feeling better and wanting to get down and run, which we cannot let them do because they have IV's in. So we have been confining them to the highchairs and the cribs and watching LOTS of Barney, Blues Clues, and Dora the Explorer.

This is breakfast today, bless their hearts they both use their right hands more than their left for eating and they don't have the option.




And drinking out of sippy cups takes a little more thought and motivation:



Here is Isaac being funny with the crib today. I made sure housekeeping cleaned the cribs extra good since they're putting their mouths all over it....YUCK!!





And both boys right after having blood work and ready for a nap:

Isaac


Caleb



So we're still here, they are doing better but not quite enough to come home yet, we're hopeful for tomorrow and at the latest Sunday. They are eating and drinking better and their oxygen levels are right at 89 - 90 and they need to be 92 to come home.

Tonight Tristin is going with a friend of her's to a church youth group trip to a lock in at a movie theater, how fun is that!!! All the popcorn and soda she wants and movies all night long.

Something to consider.....

I saw this today on an online support group I follow and thought it was appropriate to post on my blog for family, friends, and strangers consideration.... Please watch:



Honestly, I'm guilty of using the word too at one point in my life and now being on the other end with having beautiful, smart, funny identical twins both with Down Syndrome.... I'm ashamed.... and hope to help others not feel that way someday