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Thursday, December 8, 2016

Pass it Forward in Teale's Name

Mark & I ask each other all the time ~ "If you knew it would be this difficult, would you have married me?"
I'm not a person who thinks the grass is greener on the other side, but truthfully, at really tough times, I sometimes struggle to say "yes."
I wonder what life would be without without the challenges our unique family faces. I know we are a very Blessed couple, with more friends & support than I probably even realize. Often I try to focus on the good, but all of us wallow sometimes.
Today I'm letting myself feel the pain, the loss & the sadness of Teale's birth. Eighteen has been a tough one, independence is not ever going to happen for Teale. She will always need our support & our care.
Having to apply for her guardianship was a process no parent wishes for when they first find out they are expecting. I, personally, found it to be very sad & somewhat degrading. I gave birth to Teale & I have always tried to do & get the best for her. Mark, Beau & I having to get fingerprinted to be her legal guardians was offensive to me. I understand the reasons, the legalities, but that doesn't take away the hurt of the process & what this action actually means..
Please "pass it forward" in honor of Teale's 18th Birthday. All I've ever wanted is for Teale's life to be a positive influence on the world & I hope & I think it has been. But your good deeds, no matter how big or how small, will lift MY soul.
Please share below your "pass it forward" story.... No hurry, take your time & lift the world with acts of love & kindness, in Teale's name. ❤️

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." 

Saturday, October 22, 2016

Comfort

As the world gets more and more used to "our special kids" growing up in it, my dream is for comfort. It may not be a word you would immediately think of, but it is one I can see or not see when you interact with my Teale. I have joked much over the last few years about Teale being my "bar buddy." You see, my husband works for the state by day, but at night he is a musician. He can be seen  playing in several bands in our community. Music is his passion, but at this point in our life, it can't support our family. Mark has been able to balance a full time job & his music, which also helps to make ends meet. For years he was on hiatus from the music scene, life was too busy with work and family to pursue his passion. He still practiced his sax much & kept his chops, but didn't play as many gigs as he does now. When Mark started picking up more and more public gigs, I would go, getting sitters for the girls. It was my time, friends would meet me & it was a great break from the everyday. In my life, sitters aren't always easy to find. It takes a special person to be willing and able to be with Teale. She can be moody & explosive. Not "getting her" or reading her cues can create a situation that may be difficult to turn around. There are few people I trust to be alone with my "kids." One gig, when I couldn't get one of those brave souls, I decided to take Teale with me. It was a bar he had played much, there was food & I decided I would just buy Teale dinner. She could eat & hang with my friends & I, plus we'd get to see her Dad play. If it didn't go well, I could just leave. It was worth the try anyway, after all, what did I have to lose? Well, it's been over a year since I took that step & now Teale is my "bar buddy." If the gig is early enough & they serve food, Teale just comes with me. She loves the experience, my friends are all fabulous with her & I still get to see Mark perform. It's a win, win in many ways. I have always felt like every experience helps Teale to grow. Social experiences are especially important. Her learning to be in public at her Dad's band, has more lessons than I could express. She's learning restraint, not bugging her Dad while he's on stage. She's learning how to have give and take conversations with my friends. She's learned how to maneuver through crowds of people who don't know her "special needs." So many skills are taught by the experiences we "give" our kids. For Mark and I, we've always pushed to have Teale be a part of the community and not kept her isolated. It's risky and we've failed much, but the times it works are more important. Teale is able, just by living her challenges publicly, to teach compassion. Comfort is my goal, I want people of all walks of life to be comfortable with my severely developmentally delayed daughter. By taking her to events, where you generally would not be exposed to this population, we are teaching "comfort." Teale is the best "life teacher" I've had. I love that Mark & I have the same visions for her. I love that we have decided the rest of the world needs to get used to her being part of society. Many families isolate & protect their special needs family members from the world. I understand why, I've had many of those moments when someone has broken my heart by not caring or showing understanding, but without exposure, people don't get comfortable. So even though we are only one family, I think we can help educate, by just living in as typical way as possible. Teale will probably be my "bar buddy" for many years to come, here's hoping she teaches "comfort" to many. 

Thursday, October 13, 2016

Finding Light in the Dark

The tough times have somehow always strengthened Mark and my relationship. I've never understood the "key to our success." I just go with the Blessing that it is.
A few weeks ago I struggled with illness, but I'm stubborn and a bit pigheaded too. I hate to be controlled by circumstances and often won't give in to such. Waking up, I knew immediately I was in trouble. The room was spinning and I was nauseous. No, I had not had "too much fun" the night before. Mark and I had been out on an unusual night date with another couple, but two glasses of wine in a four hour period should not make me spin! Anyway, it was quickly apparent I was in Vertigo and needed help ASAP. The vomiting was violent and I couldn't get control of my emotions on top of it. So much pain and confusion ran through me. The spinning was fast, like being on a small carousal going in double time. Mark called my PCP who directed us to urgent care. The thought of getting in a car was far too much for me though, so I refused, instead asking Mark for a nausea medicine I take when I'm in migraines. That wasn't kicking in though and the vomiting was just too much. So I finally agreed to let Mark help me to get dressed to go to Urgent Care. The three of us went, with no care for Teale, it was the best solution. As we drove the nausea increased and I sobbed, poor Teale couldn't stand seeing me like that and was begging her Dad to do something for me. Moments like that, when looking back, give me much pride. Teale is compassionate and has learned to care outside herself. This is a skill we never knew if she would be capable of and it still blows me away every time she displays such compassion.
By the time we hit Urgent Care the medicine had kicked in and I was doing better. They really didn't help me, but luckily I had inadvertently helped myself a lot. The nausea medicine I had taken was in the same class of medicines they prescribe for Vertigo. They did give me a shot for pain and another for nausea, saying I should go to the hospital for an MRI. I refused, just wanting to go home. I slept off the afternoon and woke Monday, not a hundred percent, but better. Pushing through and starting my week normally, I had much to accomplish. By afternoon I was struggling again, but both Tuesday and Wednesday I would push through. I had much gardening work to accomplish for friends and deadlines to meet. I'm not one who handles disappointing others well, so I got what I wanted to get done, done. Unfortunately, I also paid a price for it. My body was revolting and the dizziness and headache were back. Thursday morning I couldn't drive Teale to her nephrology appointment and Mark had to take the day off. He was done watching me struggle and vowed to get to the bottom of it. Mark is my hero, when things aren't right, this gentle giant will move mountains for me. He took Teale to her appointment and arraigned a doctor appointment for me. My girlfriend was my chauffeur until he could get to me. The doctor diagnosed vertigo with a migraine. She said the vertigo had either brought on a migraine or it actually was part of a migraine? She also concluded I was having a bad reaction to the medication that commonly controls vertigo and I had been taking all week per Urgent Care's instruction. Just to be sure, my dr ordered blood work and an MRI with and without contrast. She gave me a script for Valium to relax me and help me sleep, plus set me up with a PT to have The Eply Maneuver performed on me. The mystery would get solved, come hell or high water. Mark would take the next day off to get me to appointments and care for me. He would take on the kids, the house and all that that entails, while I healed. He would get further and further behind at his job, but tell me it didn't matter and that I was his priority. This is where we shine. We care for each other and get each other through every glitch life throws us.
I would come out of my illness with knowledge and understanding. I would know nothing serious was wrong with my health and how to deal, if there was a next time. It was just a glitch, a moment in our life together as partners.
Another chance to strengthen us for the next challenge and so on and so forth. Blessings are easy to see in the light, but when you discover the Blessings in the darkness, your whole world brightens. 

If Only

If only you could see yourself through my eyes
You would see, strength, courage, intelligence
If you could see inside my heart,
You would know love, compassion, understanding
If you could see the future
You would know this moment will pass
If you knew your own power
You would be amazed by what it can accomplish
If you saw what others see
You would see beauty, talent, depth
You are the one who controls your destiny
You are capable of all you want
You just need to want it