I have 2 sisters. One would be considered "normal" by society's standards and the other considered "different." Let's call her "P". Since October is Down Syndrome awareness month, I'll tell you a little about P. Yes, that means she has Down Syndrome and she is mentally retarded. She is in her mid-30's and lives in a group home in Montana.
I'll tell you about childhood with P another day. I'll be honest - it was tough and they didn't have near as many services and/or programs for mainstreaming as they do today. My mother suffered from mental illness and my parents divorced - all adding to difficulties with P.
But now - P is a productive and fairly happy adult. Three of the behavioral characteristics with Down Syndrome are: having a very loving nature, being strong-willed/stubborn, and thriving on routine. All three are very true of my sister P!
She is so loving - everybody loves her and thinks she is amusing. She always has a hug for you (unless you've totally annoyed her!) and gets very excited about things like going to lunch, the latest teen magazine, and visitors. She gives a friendly hello to all those she knows around town. And she tells me that if nothing else works out, she will be marrying the guy from the car wash. Poor guy - probably didn't realize that by telling her "maybe someday", he would be locked in! :)
She truly is strong-willed and stubborn. If P doesn't get her way, she will pout and cross her arms. She might even give you the silent treatment for a bit. She has definite opinions on things and wants you to agree with her. P has my Dad wrapped around her little finger and he will do most things that she asks for. I don't let her get away with as much when I see her because she is still just a sister to me!
She really does thrive on routine. P lives in a group home where she has her own room and helps with cooking and chores. She also goes with the group to work everyday and works on different jobs for the community. P currently does shredding. She is also involved in Special Olympics (swimming and bowling) and other fun activities with her group. My Dad picks P up and takes her to his house for 2-3 days every holiday. She loves it but is always very happy to get back to her place and her routine. There is no tearful goodbye - she walks off to see her friends and barely even waves!
I see P every summer when we go to visit and we always take her out to lunch. She is happy to see us and enjoys the little bit of time we spend together. But she is always just as happy to get back to what she was doing when we got there. We kiss and hug and tell her that we'll send pictures.
That's just a little about P's life. You might be surprised to find out how many people you know are related to or know somebody with Down Syndrome. Most people (including me) don't bring it up in casual conversation. Maybe we should.
Let me get up on my soapbox here (doesn't happen often on my blog!) and say that I am shocked and appalled to discover that at least 90% of women in the US who find out that they are pregnant with a Down Syndrome baby have their pregnancy terminated! Babies are being killed simply for having Down Syndrome? (I know, babies are even being killed for lesser reasons). My mother would never have had an abortion even knowing the trials that she would experience with my sister - and I am sure that she experienced far more trials with me - a "normal" child.
If my mother had had an abortion, I would have been deprived of a wonderful sister who is a very productive member of society and brings joy not only to her family, but to her friends and even perfect strangers. She is a blessing! I also would not have learned much about disabilities or that being "different" is OK. We are all different!
You can ask P if she has a good life - she will tell you yes! Just because her life is different than mine doesn't mean that it isn't good. And for those that say people with Down Syndrome will use a lot of resources - if you call teen magazines, Crocs, and hamburgers with lots of ketchup a lot of resources (bought with money from her own paycheck)- then I guess you are right.
I discovered this website a few months ago: Reece's Rainbow, a nonprofit helping people to adopt international orphaned Down Syndrome children. What a wonderful cause! I pray that all these children will get adopted.
It's time we start realizing that ALL life is precious with value and purpose - none of us are perfect. If you find out that you are pregnant with a Down Syndrome baby - first I would say that you have been specially blessed, but I would also encourage you to talk to parents of Down's children before you make any decision that you will regret.
OK - off of soapbox now. :) Thanks for sticking with me through a serious post!
Do you know somebody with Down Syndrome?
I loved learning more about you my friend. Feel free to get on your soapbox any time.
ReplyDeleteI remember when they wanted to do that test to see if there was something wrong with my baby when I was pregnant and I just looked at them and said,"So what if there is? " It's amazing how lightly people take abortion. Like getting rid of the trash or something. But don't get me started on that.
I truly loved reading your heart this morning and it made me smile my friend.
Hugs.
When i was pregnant with my 2nd son they saw something on the echo screen that was a marker of downs and wanted to do an amnio. I refused as the results wouldn't have made a differance anyways. I spent the first 5 years of my life going to work with my mom who worked at a group home that helped people with a range of "different" problems. I cherish my time there because it gave me a very "different" perspective of life. Everyone is special and no one is perfect. We are all ABNORMAL in this perfect universe!
ReplyDeleteI certainly do know someone with Down's. She was adopted by a wonderful family who also adopted two other special needs kids. She was given all the love, care, and training she needed to be successful. It has been awesome watching her grow up to be who she is today.
ReplyDeleteThis is such a beautiful post honoring your sister! I agree...all life is precious, and it sounds like your sister is a sweet, fun-loving, warm person. I loved reading this, and I think, not only are you lucky to have such a great sister, she is lucky to have you!
ReplyDeleteWhat a great post! My senior year of high school I was nanny to a family of 2 monster boys and the sweetest 2 yr old girl with Down Syndrome. I loved her! She still had to be cared for much like a baby (she took a bottle, etc) because of problems with swallowing, and her speech was delayed, but she was such a loving, fun little girl! She loved to play peek-a-boo with me for the longest time, and after a bit she would cover her eyes with her hands and "peek-a-boo" them open when she saw me as recognition! :) Because of this child, I knew that if I ever had a baby with "disabilities" it wouldn't be easy, but it would sure also bring lots of joy and love!
ReplyDeleteOh I am so glad you posted about your sister. I have taught special needs children the DARE program and just like you said, they are so loving. I can not remember a day I went to class that I was not greeted with the biggest hug in the world. And I loved it! I have always said that we need to quit treating life as disposable trash. But people often treat marriages the same way. Sadly I was one of those years ago.
ReplyDeleteThat was a wonderful post Lisa - thank you for letting us "inside" for a personal peak. A Homeschool friend of mine has a DS daughter. They are missionaries in Peru at this time, so we haven't seen them in years, but when they lived here, I can say that she was everyone's best friend. She made me smile everytime I saw her. I know her parents and older sister have always seen her as a special and wonderful blessing from the hands of God. :)
ReplyDeleteLisa,
ReplyDeleteI'd like to build you a soapbox! Thank you for this post. It was truly a heartfelt post and a sweet tribute to your sister. Not to mention it speaks volumes on the subject of abortion which I am passionate about!!
Blessings to you today, sweet one.
Awesome, fabulous, fantastic post! Thank you so much for sharing about your sister. I actually do know someone who is mentally and physically disabled (not sure if it's DS), but I don't know them well.
ReplyDeleteShe sounds like a real blessing on this earth. I am glad that you have her in your life:-)
ReplyDeleteI have a sister who is physically disabled & slightly mentally disabled. She graduated from high school & has supported herself, living on her for over 25 yrs now. My dh also has a cousin who has a DS child, an adult now.
ReplyDeleteI think living with family members with disabilities has really helped
my teen be much more accepting of people who are different. The last wedding we attended had a Down Syndrome gentlemen in the wedding party. DS was one of the few who socialized with him during the reception.
Sharing your family story is just what we need. We need to hear about & meet people who are different to see just how much we're all the same & how much goodness there is in the world.
I'm a new follower of your blog so I didn't realize this wasn't a normal post! Thanks for sharing. Jen
Thank you all so much for your wonderful supportive comments!
ReplyDeleteOne of my friends growing up had (has) a brother with downs syndrome. We grew up with him and loved him and hung out with him like everyone else. We also participated quite a bit with the special olympics. I loved it. We also have a young lady in our church with DS and she too is a joy to have around.
ReplyDeleteI think it's so important to teach our children to respect and be honoring and how to relate (as I'm doing with my girls and this young lady). I don't think they really look at her any differently, and have no problem talking to her or letting her come and hug them....for a really long time (C:
Gorgeous, heartfelt post!! I so hearily agree with everything that you said. Sadly, we are a nation that thrives on perfection, so anything less than perfect is considered not worthy of being around. I abhor such a thought.
ReplyDeleteI might be dating myself a bit here, but do you remember the show from the late 80's and early 90's called Life Goes On. The main young man in it has Down's in real life. And he put it this way. "I look at it as Up Syndrome." What a thought!! Truly, there are no more loving people than Down's people. They love others like we all ought to love.
And I would say that not only are you blessed to have P for a sister, she is blessed to have you for a sister as well. A sister that loves her as she is and is not ashamed of her. Definitely, P is blessed to have you in her life.
Finally, just curious. You said she's in Montana. Did you grow up there? Just curious because I did. I went to high school there, and my family still lives there.
Have a lovely day,
patti