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Thursday, September 1, 2011

Filled with Hope and Fear, part six...

We are finally in the home stretch, we will be to Mark's Aunt and Uncle's soon and then what? Will it work or be a disaster, making me wish I had just stayed home with Teale? Surely the cousins will be a  source of entertainment and a good distraction! I love how they have embraced Teale as they have aged. There were years it didn't seem like they "got her" or would ever understand Teale's disabilities and how they effect her in so many different ways. There were times that the hurt cut right through me. Somehow I always expected more from family. After all they were there from pregnancy on, they were given the most candid information of anyone, they were blood relatives. Mark and I don't hold back much, well he may, but I am very open about our life. I was once told by a family member, "I can't think about your pain, what you guys go through, because it hurts too much." Well, that hurt, sticking your head in the sand doesn't make our life easier, but it does make you unaccountable. It takes the pressure off you to help. There used to be comparisons of Teale to her cousin who is a similar age. There were expectations that Teale would develop at the same pace when they were both very young. As the gap got bigger, as Teale's personality developed, the understanding got better. Still, there are times I feel like family would rather not have to deal with Teale. She is the epitome of when she is good, she is very, very good, but when she is bad, she is horrid. When Teale is ruining "their time" together, I feel self conscious, like I should be able to control it. When she is exploding at Christmas because the excitement is just too much. When she wants to hear the same song played by Mark's musical family over and over again. When she asks the same questions, tells the same statement and when she interrupts constantly, I know her behaviors wear on them. They wear on me too, but I have very little choice but to deal. Sometimes with others though I feel the pressure to fix it, to get her to stop whatever it is. If it goes into a huge meltdown, I feel the pressure to get her out of sight. I sometimes feel like people just don't want to have to deal with my kid and the reality of what our life really is. Because our life isn't always pretty and even I want to run sometimes. When others see what the tough times are like, I often remember what our church family minister said once "They are only seeing a snippet of what you live daily." This somehow centers me, takes away the frustration I feel to fix what basically I can't fix. Family is human, they feel what they feel, it is not good or bad. Just because you are family doesn't mean you embrace Teale, that has taken me years to realize. We all struggle with how Teale's behavior effects us, I do, Mark does too. My perceptions have changed, I no longer hold family more accountable or feel more hurt by their inability to understand what we go through. I just see them as people. My life has taught me, some "get it" and some don't. Some people want to support you and some want to pretend your struggles are not that bad or not their concern. I think no mater what, Mark and I often present well, like we are holding it together. Even in the most wretched times, only a few will really know our pain. In some ways this may be hurting us. We are not as strong as you may think, we hurt often, it is a deep hurt that never truly goes away. We worry constantly about her future, but thankfully we have each other to lean on and God. Teale has taught much more to our friends and family than probably many realize or acknowledge. Just by being Teale, by being Teale's family or a friend of ours, you will learn about being faithful, devoted and loyal. As she ages, I see relationships change. I see family and friends who I think will be there for her and the ones who probably won't. As her cousins grow, they give her gifts of laughter, love and joy. What they get from her is hard to put into words, but it is amazing none the less. She will always need them looking out for her. As they start their own more traditional lives, I hope Teale will always be part of them. So maybe we won't be the best company in Massachusetts this time. Maybe the explosions will be frequent and intense, but we are part of this family. We are loved and more and more as Teale ages, I believe we are accepted, as is. As we pull into the driveway, I try hard to focus on that. The door opens and I step out of the van, keeping in mind a phase I often use, "It is what it is!"

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