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SPECIAL NEEDS, SPECIAL LIFE

Welcome to a mom's blog about life with her special needs daughter, Angela Maria. This is a unique blog for you to explore and hopefully gain insights into living with and caring for a child whose needs go way beyond normal. My name is Carol and I'm ready to share our story of 43 plus years in the hope that it will help you. 
 

Angie's life story is really a huge part of my own story and through the experience of caring for her, I have gained a much better understanding and greater insight into how to live joyfully and happily in the moment while at the same time coping with a great number of challenges. I'm delighted to have found a platform where I can post my story and share my passions, thoughts and experiences with you, my loyal readers. I'm writing this blog with the help and support of my sons and family. Read on, and enjoy. Feel free to ask question too.

Newer post Are at the the top so if it's your first time here start At Angie's STory

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  • Carol Weidner

Ronald McDonald House

There is no way I can tell you about Shriners Hospital without sharing stories from my home away from home at the Ronald McDonald House (RMDH). This “home” in Lexington, Kentucky, like all Ronald McDonald Houses, provides families with a home-like atmosphere. You have a bedroom with a private bath, a shared kitchen area with 4 separate stoves, microwaves, sinks, and storage, plus dining areas, both inside and out. In addition, there are various living areas with televisions, games and a children’s playroom. Parents from the University of Kentucky Medical Center and Shriners are eligible to stay there while their child is either an inpatient or receiving outpatient treatments. Even siblings of the patient can stay in an effort to keep families together during challenging times. Personally, I found balance and friendly faces when I left the hospital every evening and went “home” to the Ronald McDonald House. The manager of the house in Lexington at that time was Miss Sally B. King who made the place home for everybody. She was a minister who had chosen to work at the Ronald McDonald House as manager and counselor. She was knowledgeable and helpful and an important resource for us parents who were making decisions for our children. Most evenings she was available to talk or play games with anybody who needed her wisdom or wanted to play. I was almost always willing to join the fun. In addition, she managed to organize Thursday evening dinner by inviting a church, scouting troop or a community group to bring in a meal for all the families. She was fun loving and encouraging and made the house a real home and encouraged us to support each other. We became true friends and we kept in touch for many years. By having the RMDH as my home away from home and sharing life experiences with so many people offered me opportunities to offer support and empathy while sharing our children’s situations. We created support systems by necessity.  For example, there with a lady who came all the way from Pakistan with her two sons who had polio.  Both of her boys were at Shriners for treatment while Angie was there. During our time together, we got to share our cultures and offer support when we or our children were having a difficult time. This friendship made me aware of how those early childhood diseases which seem easily managed here are simply not addressed in other less developed countries.  

Another unlikely friendship I developed across cultures was with a 21-year-old mom who was living at the RMDH with her toddler who was receiving chemotherapy.  As she was sharing her story of being married off at age 11 to a 21-year-old man, I found myself shocked and challenged to relate to her experience. By the time she was 21 she had had four children. This very young woman had so much courage.  Again, I was amazed and saddened that there were cultures in my own country where life was incredibly difficult in spite of all of our apparent progress and social services. Finally, I remember a very private Amish family that was at Shriners with their 4 or 5 children. Both the mother and father accompanied these kids and both parents spent the days tending to them, but in the evenings one parent was required to leave. It was the father who left every evening and needed a ride to the RMDH. Since I was heading there anyway, I offered to bring him back every evening. It was only then that he would engage in guarded conversation with me. I never learned much about him or his family and found that extremely interesting too. I wondered if it was because Amish men generally don’t talk with women who aren’t Amish or perhaps he was just terribly shy around me. In the end, the point is that Shriners and the RMCH bring people from all over the world together, from various cultures and makes them feel comfortable and at home.

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