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Thursday, October 13, 2011


How to balance the love and time I give to others is often of concern. Whether it is the new friend in my life or the man I have slept next to for the last 22 years. The people in my life are important to me, they make me who I am and they make this journey much more interesting. When my niece introduced me to Facebook years ago, I didn't get it, what is the point was my reaction? I am admittedly a FB addict these days, but if you really know me, this should not be a surprise. I truly enjoy people. I find it amazing that we can live all over the world, come together on FB and learn we have something in common. My sharing of my life with Teale has connected me to many people otherwise I never would have. I get lots of private messages from "friends" who may or may not be ready to share their struggles as openly as I do, but they feel a certain kinmanship because I have. Many of these people I would not have guessed had similar situations, many keep it hiden. I have never really figured out what or why I decided to start sharing so openly. I knew I wasn't alone and maybe I just needed the release? Maybe I needed to have more people know the truth of what Mark and I live. I know I felt a nudge to do so, a spiritual nudge, knowing that my sharing would connect people. Often in my life, people have shied away from how difficult our life can get. Both family and friends have stepped away when we have needed them to step up. Some of this I am sure is our "fault," as Mark and I put off an air of strength, even when things are at their worst. When Mark's Mom moved in with us a year ago, one of the things Mark said was "This isn't going to be perfect, let's face it, you will be living with Teale." Truth be told there are times both Mark and I wish we didn't live with Teale. It never occured to me how much of an eye opener this would be for my Mother in law. Afterall, she had seen the challenges, she had come to the NICU when Teale was born. She was a teacher and knew much about child development, so she must have seen the slowness of Teale's progression, right? My Mother in law is dealing with her own progression of a disease, which is taking her slowly from us. So she may have known we struggled but truly she had barely ever stepped up back when she could have. Now as she lives our life, her understanding becomes more clear or at least as clear as it can at this stage of her life. There are times I have heard regret that she didn't know how tough it was in our home. Sometimes I have regret also, regret she didn't show her son, my husband, more compassion and care. I believe he has needed that from his family, but rarely has he gotten it. For his Mom it is all but too late, now she needs us to take care of her. The times that she could have helped us are in her past. Her occasional compliment though, that helps both of us know she may finally understand our life. Unfortunately or fortunately, Mark's Mom is not who she was as a younger person. She says hurtful things that imply Teale is just a nuisance in our life, that the old way of "putting away" a child like Teale may be best. She also says kind things about our strength, courage, patience and perseverance. She sees how much energy it can take at times to just keep going, fighting for a better life for Teale. She was not able to step up and help us, for whatever reason when she was more mind and body abled, we were not who she chose to help. She is not the minority either. I have found it is difficult for many to step up and help those who are closest to them. I have seen it in our life and in several of my friends lives, especially those who have children with challenges, often their extended families shy away. It strikes me as funny how people will voluneer for this, that or the other thing, but ignore the people closest to them who are suffering. I know I am not imune to this either. I love volunteering, I would spend much of my time in schools, old folks homes, working on fundraising or dreams for The Dream Factory or persuing many of my other interests. I have family and friends who I am sure would benefit from my giving to them, but often giving to a stranger is easier and somehow more rewarding. Balance, the definition is a state of equilibrium, mental steadiness or emotional stability. We all strive toward this,  in our family, in our work and in our relationships. We may come close at times, but more than likely we miss the mark and don't see the needs that are right before our eyes.

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