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Tuesday, November 22, 2016


Most of this is a post from FaceBook that I am elaborating on. Teale will turn 18 years old on December 9th. Birthdays are always a time of reflection, but 18 has been somewhat tough to swallow. Teale will not have the freedoms of an adult, ever. We will always be making the tough decisions for her, as we apply to be her legal guardians. The legal process is a necessary evil, but in my opinion, it is evil. My husband, myself and our 21 year old son all had to fill out the necessary paperwork and get fingerprinted to become Teale's legal guardians. The application goes to court and we will be called in front of a judge before it is finalized. Beau will be our standby, if, God forbid, something were to happen to both Mark and I. Otherwise, without Beau, she would become a ward of the state.

Reflecting on the everyday things I do for Teale gives me much angst. I feel the need to write down everything that I just know to do, but never verbalize. The many doctors she sees, the medications she takes, those things are fairly easy to track. But then there are the personal care needs, the details people may not realize, the funny terms she uses for things she wants. The tweaking of medicines in Fall and in Spring, if a manic state hits, is second nature to me, but without this knowledge, it would be a tough stretch for Teale and a caregiver. The way Teale likes to be put to bed and the routines we just do automatically that give her comfort. I know Teale can be flexible, but a sudden loss of Mark and I would be an unthinkable challenge for Beau. As I reflect on her birth and the upcoming Birthday, I realize Teale may outlive us and I am both grateful Beau will care for her in our absence and I ache to protect him from the challenges he will face.

There's never a day that goes by that I don't have at least one fleeting thought, wondering what she would have been, without the brain damage occurring at birth. Many may think that such yearning is wrong. Many may think I should let it go. I'm open & honest about our life with Teale, so I'm sharing this very deep feeling about me. I may somewhat have let go of what Teale should have been, but I have also accepted that it doesn't make me a bad person to sometimes grieve those losses.

I wonder if she would have been musical, what her talent would have been? Would she have had a beautiful voice or played a mean sax? I wonder if she would have had many friends at PMHS, played sports, wanted to go to a college far away or nearby? I wonder what she would have become as an adult and if she would have been a wife or a mother?
I may never totally except my daughters fate in this world, but that doesn't make me not except her.

When I was pregnant with Teale we knew she'd be born with gastroschisis. A friend of ours did some healing massage & Reiki on me several times. Our friend was Native American Indian and she invited me to a healing circle with other Native American Indians.
Mark and I went on a Sunday afternoon to a round house in Fishers, NY. What happened there has shaped us as parents and as people. There were ceremonies we watched and then I was asked if I was open to having a laying of hands. With the exception of the one friend, I had several "strangers" lay their hands on my pregnant belly. Some touching, some just hovering. After several minutes people shared what they felt the spirit of our baby was telling them.

Many of those statements have never left us; She has a strong, incredible spirit & much energy. She chose Mark & I as her parents. She chose her path. Her gastric issues would be a low priority of the many other issues that would surface.

Teale is the heart of our family. She both bonds us and divides us. She centers us & helps us to believe in our abilities to help her. She teaches us the most, tests our patience and our tenacity.
Remembering ~ "Teale chose her path" brings me the most peace. So even though I often wonder "the what if's." I also know we are living a life with a spirit who wanted to teach us and hopefully we are learning the lessons well.

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