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Tuesday, November 22, 2016

Reflecting

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.

Sunday, November 13, 2016

My Heart Aches

As opinions and feelings are coming out about the election, many of us have  been quiet. We are not apathetic, we are contemplative and trying to understand our own feelings.
I write because it's cathartic and I'm still trying to understand. I write for me first, to learn and to remember. Writing helps me sort through my confused feelings and often, solutions come to light.
So if this is your first time here, I have a daughter with severe, multiple disabilities. Her life has taught acceptance, grace, humility and deep unconditional love. She has challenged my family more than anything else. 
This election has rocked me, my confidence in a caring community has wavered. I am completely unsure of the future for my daughter under this government. 
I am struggling with what I used to think I understood and what I now realize. I am struggling with what I believed about society and people everywhere. I am struggling with how the most vulnerable, can be overlooked and ignored. 
I thought my daughter had a village, a community of people who care about her. I've gotten support and love from people who have looked into our faces and seen our struggle. I've been forced to rethink and reevaluate each one of those faces. I'm no longer confident about my journey here. 
I'm mourning the fact that I may have been delusional and care came only in theory, when it didn't get in the way of what people really want. Is her life  and wellbeing only important to my face, but not in action? 
I'm challenged by the fact that my President, a grown man, can make fun of someone with disabilities. That those actions don't resonate the same sick response in all, as it does in me. 
How can you not show a deep respect for a man who lives with challenges and has been so successful. My daughter, like that reporter, uses only one arm. I understand the obstacles this causes her every single day. I see every success she has, to be monumental. Teaching a child who uses one arm opens your eyes to how blessed you are to have two working arms. Disrespect of a person with different abilities just mortifies me. How in anyone's world could it be ok to make fun of others, especially as a man running for President of The United States? 
I'm mourning the fact that so many who know us, who know my daughter, could ignore a man's blatant hate and disregard toward a whole community? That community includes my daughter & if you have never had the honor to be part of the special needs world, you are missing out. 
I'm mourning and many throw around how we are being whiners or over sensitive. Many protect him and say he didn't mean it, but I've seen the videos and my heart aches.
My heart aches because I understand what it's like to love people who are challenged and I feel sorry for those of you who don't. 

Friday, November 11, 2016

Good Intentions

Recently I was "questioned" about Mark's schedule. Our weekends are often filled with gigs. The friend said ~ "So you never get a weekend?"
The question seemed negative & accusatory. Although, it may not have been meant that way, it did get me thinking about my life with my "weekend musician."
Weekends have just not been for us, what they are for most. Our "living for the weekend mentality" died about the time Teale became explosive.
She has always been tougher on weekends & school holidays. Being out of schedule & not in school or programs would create anxiety in Teale. Often her behaviors would escalate & no doubt, in general, she can be tougher for Mark & I, than for any other person or program. We have had to "divide & conquer" in our family much. Mark has protected Gwenn, Beau & me against Teale's explosive episodes by being her primary caregiver whenever he could. I have, in turn, had much more time with Gwenn. Dividing our family has been tough. Mark & I rarely saw each other on weekends in the most stressful days of Teale's behaviors. Dividing our family this way has created some problematic dynamics, but our intentions were always for the good of all.
There was a time Mark wished to never have a weekend. He would say he would gladly give up his weekends & work seven days a week, if Teale would also be able to go to school seven days a week. He saw her as happier & more stable, on school days. He yearned to create that consistency for her & a break for our family.
Life with Mark is just that. He is selfless, loyal & loving.
So as opportunities started opening up again for him to pursue his music, timing was everything. Teale had become much more stable, life was "easier" & more predictable. It was his time & I was thrilled to see him in his passion again.
As Mark started playing gigs, I saw him lift people through his music. I also realized how much he received in return. His renewed energy was contagious in our family & in our friends. Mark brings joy through music & with that, we get, far more than we give up.
As for me, I don't get a lot of clear weekends, but Mark makes up for that everyday. Day Dates have become our escape & in many ways, those days are far more renewing to my spirit than weekends ever were.
Thank you Mark for putting me first. As I heard you tell someone recently ~ "We are lucky to have each other."