The Sibling Bond

Friends, as you know we are in the final count down to the 2014 ‘i have a voice’ International Gala We have had some amazing help and some new fabulous people join the ranks of GiGi’s Playhouse volunteer.  This morning we want to introduce you to Barbara, we are all pretty smitten with Barbara. I am going to zip it now and let her introduce herself and share a bit about her life. 

Who am I? I am many things – a writer, a creator, an original thinker, and acute reader of nuance in communication, an employee, a boss, a volunteer, a woman, friend, wife, step-mother, and daughter. Most of all, I am forever and always, the twin sister of a brother with Down syndrome. It has perhaps been my most defining role. 

“You are my sunshine, my only sunshine, you make me happy when skies are grey. You’ll never know dear how much I love you. Please don’t take my sunshine away.” 

I was born in 1957. I have been singing that song – our song – to my twin, my brother Brian for over 50 years. It is our song and intrinsically reflects the light he has been and he has brought to my life all this time. 

Being my twin, we have always had that twin ‘thing’ going on. Whatever separated us, we knew when one another was sick or feeling down. We laughed over the same things. We have never been for long apart even geographically. I couldn’t stay away. In later years, I didn’t want to stay away from him. In the end, I wasn’t born to be away from him or him from me. 

That isn’t to say I have been all nobility and grace regarding our relationship. I will accurately report that growing up in a small rural Upstate NY town, I don’t remember thinking Brian was different, until school began and other kids and their parents made me acutely aware of his difference. Brian rode the school bus to our middle school in town and then transferred to another bus that took him another hour away to a program in the nearest city – his ‘school’. But, oh, those delightful rides with the teasing and the remarks, and the ‘different by association’ bullying that had to be endured. Small town America all but lost its pastoral charm for me right then and there so many years ago. Walton’s Mountain it was not.

 Yet regardless of the slurs, the stares, the remarks, my brother was still MY brother. He and I teased each other, tickled each other, went to the library together, ate banana cake on our birthdays together, went shopping together, and in 2005 began to live together once again. It was the culmination of for years what I knew would happen – what for some years I had run from, for some ignored – but always since I was a child, knew would be – Brian came to live with me full time. The baton was passed, and I became the second generation caregiver to my brother. 

I would say here that I had wondered all my life who would love me, because not unlike being a single mother, I came into every relationship with another person, with Brian beside me. When I married in 1995, I knew I married a wonderful guy, and when the time came in a time of crisis in all our lives, I can remember kneeling on the floor and looking up at him in his wheelchair (primary progressive multiple sclerosis IS an ugly disease) and crying. I said, “Please don’t make me chose between you or my brother.”

 I needn’t have worried at all. Bob never did. Brian came on board and if ever there anyone who loved my husband more than even his own children, Brian loved Bob so very, very much. In our own unique, however weird way, our family – the man in the wheelchair, the man-boy with Down syndrome, and the wacky woman with the red hair became a family.

 I think Bob gave Brian a purpose. Bob needed him to pick up the things he dropped, to run and fetch, to be a guy with. Bob and his kids took him up to the family camp, which Brian fell in love with. There were restaurants and rides, parks and picnics, and every night, Brian would come up behind Bob and put his head on his shoulder and say, “I love you, Bob.” The answer was always the same, “I love you too, Brian.” 

There were a lot of hard times for us too. A lot of illness for both of them. A lot of times I was on my knees asking that this burden end for me, be taken away from me. And there were a lot more times when it was Brian who got me off the floor by wrapping his arms around me and saying, “Don’t worry, Bar-bar, it be OK.” And – it was. It was. 

Be careful what you ask for, for you might get it. My burden was taken from me. Brian passed away in my arms on June 21, 2010. Bob passed away in my arms March 14, 2012. In the Christian Bible it says:

 1 Corinthians 1:27 Translations 

But God hath chosen the foolish things of the world to confound the wise; and God hath chosen the weak things of the world to confound the things which are mighty; And base things of the world, and things which are despised, hath God chosen, yea, and things which are not, to bring to naught things that are.

 Both my husband and my brother together brought me – the something ‘naught’ into being. I know whatever is good inside me, whatever can be called brave, whatever can be called kind came into being by the love of Brian and Bob. I know – deep down in a gut/soul knowing way – I have never been more fully alive and more profoundly changed in how I view life and even what I want to do with my life. I have been born anew as a person on the shoulders of a person with Down syndrome and a person in a wheelchair.

 A long time ago in a high school English class, the teacher asked my class (after reading some long forgotten book), “What good are children born with disabilities? What good are children in the world broken mentally, physically, emotionally? What good are they?” Even I as sister to one could not come up with an answer at that time and I sat as silent as the rest of class at my desk.

 Today however I do have one – while it is all well and good to ‘stand upon the shoulders’ of giants in industry and wealth and touch success – to stand upon the shoulders of the love such as our children, our siblings, our friends with Down syndrome give so generously and unconditionally to us, is to be able to walk in the ‘sunshine’ forever. We will never ever plead, even in song, for it to stay. It will.

Barbara has been an amazing and much needed tool to our media crew. She has a beautiful way with words (as you can tell) and here is some good news, she will write for you. Bio’s, Press Releases….etc. You name it she can help. I think I even saw she was helping write Valentines letters! How awesome is that.  Barbara has been the most outstanding help in getting all our thoughts and passions into a working form to send to the press. We really could not be more thankful.  Her story and her heart are a gift to us and we are very very happy to have her apart of the Playhouse family. 

Please stop by Barbara’s Facebook page by clicking here, give her a like and let her know how glad you are she shared her story and her talents with us!