NATIONAL DOWN SYNDROME MONTH: Growing Up With An Angel

[The month of October went by so fast I didn’t complete my blog series for National Down Syndrome Month.  So before beginning November’s blogs for National Adoption Month I submit Part 2 for your reading enjoyment and enlightenment]

 

Growing up with my “Angel-Sister”, Kim was an experience with which I have nothing to compare. Although she’s my sister, with the age difference and her “differ-ability” our relationship was/is not a typical sibling relationship.  Being an adoptive parent never having given physical birth to a child, in many ways I feel that she is my child of whom our mother was the surrogate parent. J

As excited as I was to have her, I would later realize and understand there were many other emotions my mother may have had having given birth to her.  Not only did she not expect to become pregnant in her forties; neither did she expect to give birth prematurely to a special needs child.  I recall over hearing conversations she had with others questioning what she may have done during her pregnancy, like drinking beverages with artificial sweeteners, to cause my sister to be developmentally disabled.  She wasn’t aware at that time that Down Syndrome is a condition in which the baby has an extra chromosome. As an adult therapist now, I can understand the guilt, fear, amongst other feelings she may have experienced.

Just purely elated to have my baby sister I didn’t question or even care WHY she was the way she was.  In my eyes, and heart, she was just perfect the way she was.  I recorded each of her developmental milestones in her baby book, and wasn’t bothered that she didn’t walk until she was two years old.  The only times I remember feeling that she was “different” was when I saw classmates’ siblings of the same age were doing more things than she was.  But I didn’t dwell on it.  (BTW, NBA player Gary Payton’s brother and I were classmates, and Gary was born the day after my sister. J)

Before Kim was born I’d met one young man with Down Syndrome.  He was the son of a family friend and was about the same age as me.  I remember being told that he was “deformed”.  Although he lived out of state and we didn’t visit often I always had a special affection for and fond memories of him.  I don’t really remember explaining Kim’s “disability” to others.  I took her almost everywhere with me and she was always accepted without question.  Probably because she was just so darn cute!  J

Leaving home to go away for college was probably the most difficult thing in our relationship for both of us.  I intentionally chose a college which was only an hour’s drive away, so I wouldn’t be too far away from her. Before then we had really only been separated from one another once, more than overnight.  We actually took our first vacation together, without our mother, the week following her first birthday.  We flew to Los Angeles and stayed with our “play Aunt and Uncle” for three whole weeks!

The first few times I came home from college it was hard because when I’d leave and not take her with me, she’d cry and most of the time I’d cry too. My mother would call to see if I made it back to school alright and ask me to speak to her because sometimes she would still be crying “I want Twee-Twees” (her word for my middle name, Louise).

Some of my most fond college memories are taking her to stay with me during the Summer.     My friends and classmates adored her!  I attended U.C. Davis where the primary mode of transportation was bicycles, so I would put her in the child seat I had attached on back for her and we’d ride to and around campus!  She LOVED it!  If I had a class one of my friends would meet us on campus and watch her while I went to class.

One of the funniest and most fun times was when an older classmate and I decided to throw a birthday party for his daughter and Kim.   We invited our friends and we all had birthday hats, whistles, food, cake, crepe paper, pin the tail on the donkey—the whole works!  Kim and my friend’s daughter looked at us as if we’d lost our minds!  We had!!! 😀

Still today, if I run into anyone from my childhood or college years, the first question is “How’s Kim?”  Even in our adult years my identity is established as “Kim’s Sister”. Wherever I/we go, someone will say “Oh! You’re Kim’s sister!”  J Sometimes people we’ve not seen in a long time will look at us and not recognize me until they look at her and put two and two together.

Throughout adulthood, no matter where I’ve lived, she has come to stay with me for extended visits.  She enjoyed the independence I’d allow her in doing things for herself, and at one point I asked my mother to allow her to come and live with me, but she wouldn’t.  In January of 2000 I was planning a weekend visit for her over the Martin Luther King holiday weekend. I called our mother to verify the time I’d be picking her up and asked when did she want me to bring her back, she said “never”.  I figured she was joking as she often did.  However when I arrived to pick Kim up, she had many of her belongings packed in suitcases!  I was totally shocked and unprepared for this; but I felt that if I didn’t seize the opportunity then and there it might be my only chance.

It took a lot of juggling during those first several weeks to work out a plan; however, Kim was in her own words “very very happy”—so much so that when I drove the 30 miles for her to spend the night with our mother while I attended a conference she refused to stay.  So…when we’d made the return trip and drove into my driveway she said “I live here”. 

We have now lived happily together for over 12 years now.  I’d be lying if I said it was ALL “angelic” because she can be VERY stubborn at times, and has some other difficulties, but I wouldn’t trade her for anything!  Yes, it’s a lot of work but we’ve gotten a system down which works for us.  The greatest difficulty is not having any back-up for emergencies, or even spontaneous outings for myself; but God has provided, and gratefully we’ve had interim care takers whom she’s liked and I’ve trusted.

Our mother passed 5 years ago and although Kim will occasionally say “I’m sad; I miss my mudder” and shed a tear or two, she hasn’t skipped a beat and is very clear that “I want my tister”.  One of the last things I told my mother before she died was to not worry about Kim being a burden on me, because out of all the things she’d done for me, giving birth to her was the most cherished.  I think that really “released” her, and I meant it.

I’m frequently told by friends, strangers and extended family that she’s so lucky to have me, and that I will be blessed for caring for her.  What they don’t know is what a blessing she is in MY life.  It is an indescribable joy to have her express gratitude for some of the basic care, like say “Thank you Ebelyn” when I’ve given her a shower; or just walking up to me and giving me a hug and kiss for no particular reason. As tired or low as I may be feeling at the time, those words and actions melt my heart and remind me that I have been given the special responsibility and privilege of taking care of one of God’s Angels.

Sometimes she will say or do something totally unexpected which throws me totally off guard—and most times causes me to crack up laughing. It seems as if sometimes she can read my mind. I can be thinking something and she will either make a comment or ask me a question about it, without my having said a word. We continue to have that special “connection” and sometimes when I look into her eyes and embrace her I experience the same feeling I had that first day I saw her in that incubator 44 years ago.

Another one of my greatest joys is watching her dance.  Like me, she has always loved music and dancing (yes she even knows when Stevie Wonder is singing J) After watching the praise dancers from our former church, she told me she wanted to dance.  The leader of praise dance team was happy to work with her (she also had a brother with special needs), and even made dance attire for her. Because she wasn’t able to follow the other adult dancers, and didn’t really fit in with the children, she was allowed to dance individually.  It was beyond anyone’s expectations.  After that she would frequently tell us “I need to dance” and at times would be given the opportunity to do so.   Unfortunately, for some reason it was later decided that no one would be allowed to dance outside of the dance team so she didn’t get to dance anymore. 

She has danced in the talent show for her Day Program; and recently after quite some time of having not danced I watched her dance again.  After laughing at some of her antics, the tears began to swell up in my heart and run down my face.  I couldn’t help it as I was reminded once again of the fact that I AM entertaining an angel– aware.

I’ve posted a video of “The Angel Dancing”on my facebook page (https://www.facebook.com/msevelyn.theheartlady) for your enjoyment–if  you can get past the shaking and moving as I tried to hold the camera and contain my composure at the same time).

If you have enjoyed this National Down Syndrome Month blog series about “My Angel” I hope you will be interested in purchasing and reading more in my upcoming book “Entertaining Angels Aware” which is scheduled for completion and release in July 2013 in celebration of Kim’s 45th birthday!

Also, if you have an “Angel” in your life and would like to contribute your story to the book please e-mail me at Ms.E@forachildsheart.org or ME@TalkToMsE.com

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