Saturday, October 2, 2010

Being a Parent of children with Down Syndrome

I thought it would be appropriate to blog about things that have changed for me since becoming parents to my identical twin boys both with Trisomy 21 otherwise known as Down Syndrome almost 5 years ago.  First of all, its hard for me to even say out loud that they are going to be 5 years old in 15 more days... THAT is incredible to me.  But here's the list of things I've put together in honor of October being Down Syndrome Awareness month.

21 Things that have changed for me now that I am a parent of a child with Down Syndrome:

1.  I now know more than ever, that God is in control
2.  I know that I need my faith
3.  I know that I need my family
4.  I am finding that I am stronger than I ever thought I could be
5.  I know that the twins put smiles on my face each and every day
6.  I know that the twins put tears in my eyes for both joy and sorrow
7.  I am learning what it means to advocate
8.  I fear thinking to far in the future as I don't want to assume anything
9.  I know have become an EXPERT at scheduling and they sure keep it full
10. I now know over 300 signs
11. I know what PECS are (Picture Exchange Communication System)
12. I now know my way around Pittsburgh Children's Hospital and how to get there
13. I appreciate internet so much more just to reach out to others for support and knowledge
14. I know what The Arc is and am proud to serve as the Executive Director of our local chapter
15. I know that there are many more "ologists" in the medical field than I have fingers and toes
16. I know that I can relate to any parent with a child with any disability
17. I have learned more acronyms that I would ever care to (TSS, BSC, OT, ST, PT, MT, DS, PDD-Nos)
18. I have learned that not all people with Down Syndrome are always happy.  My boys get grumpy, sad, mad, and mean daily.
19. I have learned that people with Down Syndrome are capable of doing so much more than I thought. 
20. I have learned that we take way to much for granted.  Its so easy for us to do so much that people with Down Syndrome have to work so hard just to do.  BUT they learn to do it with smile on their face.
21. I have learned, that I have so much more yet to learn.

My children have Down Syndrome but I expect them to have a wonderful future.  They make everyone they come into contact with smile.  They amaze so many.  They have taught many in their five short years here on earth that they are determined little guys.  Non-verbal and all, they let you know.  I am one happy mama!!!!

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