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Sunday, December 13, 2015

Two Years Ago & the Dream is Coming True


Mark wrote this two years ago for his Mom's memorial service. I have thought much about the words I hi-lighted below, as the money has come pouring in. Mark spelled out his dream in this letter to his Mom and it is going to happen... It just seemed appropriate to share this letter on the morning of the two year Anniversary of MIL's passing. 
After all, the stars all seem to be aligning. Scott's vision has been a huge success & we have found a few Selmer Mark VI tenors right here in town for Mark to try out. Actually, he has one on loan right now & played it at a gig last night! There is so much to be thankful for in our life together, we have been Blessed by good friends and much love. But watching my sweet husband get something that he never saw as a possibility, well, that has been a true joy!  
Congrats my love, because, in the end, the money donated was given by many people who believe in you and that is the greatest gift of all. 



Dear Mom,

I will never have to look very far to see or realize the lasting effects of your life on mine.  From the car I now drive, to the saxophone I play, to the Christmas music I enjoy, and even to my wife’s name.  And though the Toyota will someday be traded in and I might move on, the good lord willing, to a Selmer Mark VI tenor, I will always have the music you put in my heart.
 
So many Saturday afternoons of my youth were spent listening to Will Moyle’s Essence of Jazz show on WXXI, during which you would inevitably hear a tune that inspired you to walk over to the piano, pick out the right key, sit right down and launch into the song, singing and playing, filling the entire home with a joyful noise.
 
Sunday mornings meant off to this very church, good old Mt. Rise, to worship God, and to sing with the choir.  Again, your beautiful voice would fill the sanctuary, and though shy, little Markie was often embarrassed by the fact that his mom was up there, seemingly singing above all the rest, I secretly was so very proud that you had such a beautiful, sweet, yet powerful and commanding set of pipes.

One might think that a young boy who had lost his father at such a young age, as I did, might have unpleasant memories of his youth.  And yet, I have none of that.  Our days on Red Fox Run were, in my memory, filled with happiness. And while I was well aware that the makeup of our family was different from almost everybody else’s in the neighborhood, I did not long for anything more than what we had; what you worked so hard to establish.

And perhaps the most meaningful lessons you taught me were in your last years.  When you first came to live with us, I thought to myself,  “this will be cool; Mom can hang out downstairs, do what she wants, we can visit with her and we’ll have a built in babysitter!” 
I soon came to realize that that wasn’t the case. Taking care of you was often difficult and time consuming.  But the experience was also rewarding and consequential to myself, Ellie jr., Beau, Teale and Gwenn.  We learned that families ought to stick together, we learned to give back and we saw the grace of God moving in countless others who would out of the kindness of their hearts pick you up and take you to choir, out for lunch or to a concert. 

Mom, I owe you so much.  And yet if you were here I know you would say, “don’t be silly.”  I will be eternally thankful for so many life lessons you passed on.  Until my dying days I will remember the good times: Our yearly camping trips, waking up Christmas morning with the sliding door shut, calling out to Scott downstairs through the heating vents to coordinate our joint convergence on the presents under the tree, seeing you in the hallways at Jeff Road, tap dancing to “Put on a Happy Face”.  God is good.  Thank you, Mom. I love you. 

Sunday, December 6, 2015

Thank You!

Two days ago my brother in law had a genius idea to raise funds for my sweet hubby to get the sax of his dreams. Neither Mark or I knew of this plan & if we had, I'm not sure we would have approved. After all, the world is full of people who truly need things. Mark's dream of owning a Selmer Mark VI tenor sax has always seemed frivolous in our life of many challenges. But as life has gotten somewhat more stable, Mark has had more time to play in more bands. His Yamaha tenor is a fine instrument & has earned Mark much respect, but Scott is right, Mark deserves better. He doesn't want for much in this world. He's one of the nicest men and this I can say with true conviction, because I'm the lucky woman who gets to share life with him. I know there are many needs that families have, heck, we basically live paycheck to paycheck, so there are times I'm not sure how we'll pay our living expenses. Mark's gigs aren't frivolous to our family, they are much needed income. There have been many expenses in our life with our special needs daughter, Teale. Some of which are tough to explain. Money that disappears before our eyes & sometimes I'm seriously just not sure where it has gone. The biggest loss has been a steady earning income. There have been many challenges & changes we've made to keep Teale home in our care. My being able to take her to all her appointments & be home for after school & school vacation care has not only been nice, but a necessary need. Mark has the abilities to make "extra" income by using his gift of music. The new horn will give Mark the power to compete for more gigs, which will equal more financial stability for our family. So in closing, it may appear crazy to own a $5000 sax, but it has more earning power. So my sincere thanks to Scott and the many contributions from all our friends, known & unknown! We are truly the most Blessed couple I know!

https://www.crowdrise.com/aninstrumentforahero

Sunday, November 22, 2015

Posts from Facebook, to quickly update our Blog followers



Update on Teale's kidney issues;

Kidney function is not returning to normal. Also there is thinning of one kidney wall. At this point we are unsure if it's all from Lithium damage?
Official diagnosis is Chronic Kidney Disease.
High blood pressure med starts ASAP...
Eco cardio gram to check heart b/c high blood pressure could have caused damage.

Teale is at respite for the weekend. The quiet of the house gave me time to reflect on the latest medical news.

Second morning with Teale at Respitewood, somehow life without her here is both peaceful & painful.
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 what she should have been.
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 & 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.
I've told the following story to some, but the latest medical issues have me thinking about this much again.
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 & invited me to a healing circle with other Native American Indians.
Mark & I went on a Sunday afternoon to a round house in Fishers. What happened there has never left us. There were ceremonies we watched & 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.
Some of the statements have never left us; She had 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 & divides us. She centers us & helps us to believe in our abilities to help her. She teaches us the most & tests our patience & 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 & hopefully we are learning the lessons well.

Prayers are all we need. We don't know the path this will take us on, but to be surrounded by love & light will keep us strong. 

Wednesday, September 16, 2015

Day Date to Lilly Dale ~ part four

It was shortly after listening to the woman in the yellow shirt be given a message, that a new medium was brought up. She said to Mark ~ "You, in the brown shirt." I'm sure our surprise was apparent, it had so been my dream he would get a message today. Mark is kind and caring to me, he brought me here today, even though the drive was a bit daunting and I'm sure he would have been happy to kayak or do something else, closer to home. I can't explain the pull, but I needed to fulfill this longtime desire to go to Lilly Dale, so although I wanted to say to him, as we were discussing our Day Date ~ "That's ok, we can go another time." I bit my tongue and hoped for the best. This was the best I was hoping for. You know that old adage about loving someone so much, you wish happiness on them, more than on yourself? I can't come up with the wording, but that is how I felt, it was fine if I didn't receive a message at Lilly Dale that day, but boy did I want Mark to receive one! When he was called out, my heart skipped a beat, would it be a message from his Mom or his Dad or both? I was hoping for both. Mark turned fifty this past Summer and he had reflected much on his life, on our life. He had lost his Dad suddenly to a heart attack, brought on by damage to his heart from a childhood illness of rheumatic fever. Mark was only two years old on that fateful day when his Dad dropped at a NYSMA conference, he was a music teacher and was out of town with his students. Mark has always wondered what his life would have been, had his Dad lived, he has always wondered what his Dad thought of him. His Mom on the other hand, adored Mark. After all, what isn't there to love? Mark had been a caring, devoted son, he and I had taken Mom into our home for most of her last years of life. In those years, her dementia got worse, but our love got stronger as we cared for her together. So a message from her would be nice too, we miss her and wonder about how she felt about her passing. We let her go, as a family, a decision I have no regrets about, but a small part of you always wonders how your loved one felt about your decision. We had done it once before, my Mom had had a severe stroke in 2006 and my family chose to let her go. With both our Mom's the decision seemed fairly easy. They had both been very independent, strong woman, neither would want to go on in a helpless state, needing constant care. Mark and I had been privileged to both be at our Mother's passings. It is something so surreal, so indescribable, that I truly can't explain how honored and blessed I felt to be with each of them and my dear Mark, by my side. There is much to both those stories, but back to Lilly Dale. The medium began her message to Mark ~ "As you walked in there was a Mother figure with you." I think my tears began immediately, we have felt both our Mom's with us much since their passings. Mark and I are very similar in our beliefs about after life, God and spirits. We both believe in a heaven, in a God and in our loved ones who have passed "looking after us." The message wasn't long and some of the images the medium brought up seemed "off," but some, some were so perfect and only things his Mom would know. The tears ran down my face as the medium spoke, I could barely look at Mark's face, for fear I would completely start blubbering. It is tough to put into words, but I'll try. First of all, "Mom was very surprised that Mark came to Lilly Dale." That seemed very Mom~ish, she was probably my polar opposite in many ways. Never in life would I remember her believing in things like mediums and if she did, she certainly would not have admitted it! That made me laugh out loud, I had pushed Mark, that is why he was there that day. The medium went on to talk about animals and the source of laughter it brought on the other side. Another thing Mom and I did not share, I love animals and have never lived without some, she ignored them, even when living with us and our sweet cats, she never enjoyed their company. Apparently on the other side three animals (the medium said small dogs, Mark and I think it is cats, as we lost 3 cats in our marriage) follow her. I can totally see my Mom's laughter in this irony, my love of animals is from her and I know my MIL not liking animals always seemed strange to my family. The medium went on to talk about Mark's driving and his need to be careful. She would say, it's not like something bad is coming, but you need to slow down, there was a message about a stop sign and paying attention. Like I said, the messages come at you quickly and the wording is tough to recall. But I found this as humorous as the animals following her, because if anything, Mark is a slow driver and it drives me a bit batty! He became an old man driver long before he became an old man, is one of our inside jokes. Then she talked about his not filling the gas tank, leaving it to do another time and his "pushing this often." This is SO TRUE! I will often get in a car and find it on empty, frustrated because I didn't know I needed gas and I am always running. We have never been a couple that sticks to driving "our own car," we switch around much. So it is common for us to switch cars for the weekend, depending upon who is driving the most or the least, as we have a large conversion van and a small four door. Anyway, Mark has left me and himself, on empty many times and then realized it when there is not much time to get gas, let's just say, he pushes it often! A funny thing to latch onto and not something I would have thought his Mom knew about him. She also talked about Mark being a good son, about him giving to others much and not taking enough time for himself. The message went on to say something about Mom going quickly at the end and wanting it that way. She had been hurting and wanted the pain to end. At the end of the message Mom left us with a whopper, a sign it was really her delivering the message through this random stranger we were listening to... 

Some background may help you to see the significance of the final message. When I married Mark, I soon realized that The Bradley clan would be pretty easy to work with when it came to sharing holidays. They had very few traditions around the "three holidays, that I would consider the big three family times;" i.e. Thanksgiving, Christmas and Easter. They only had a strong tradition around Thanksgiving as a family. It was spent with out of town relatives coming in from Florida and from MA. Mark's Mom's side of the family would come into Rochester to be together. She is one of five siblings and back in the day, all of them would gather at my Mother in law's home. I had missed the bigger Thanksgivings because Mom's Dad had passed just a few years prior to our marriage and Mom's sister, Ramona and her husband, Gene, hardly ever came anymore from Florida. Her brother Bob and his wife, Joyce had stopped "religiously" making the trek too, but did come a few times. Still, early in our marriage, we generally started the weekend of the Bradley family on the Wednesday night of Thanksgiving weekend. The arrival of Aunt Dee and Uncle Richie (Mom's younger brother) with "kids in tow," Debi & Randy, (Mark's older cousins, neither of which were married or had kids of their own) would drive in from MA and the festivities would begin. Mark and I would at least go greet them at Mom's on Wednesday night, after closing up our daycare. We may share dinner or a couple "fingers" of wine. (Another Mom~ism, she would ask for more wine, but almost always say, "just a couple fingers," holding her fingers sideways and showing just a few.) Mark, Randy and Mark's brothers would sometimes go out, it's a big night for music in bars. Thanksgiving weekend, back in those days, started on Wednesday and ended on Sunday. After all the festivities of Thanksgiving Day, Friday would be another big gathering of leftovers and family. Saturday might include shopping or a craft fair outing.  Of course there was also music, lots and lots of music would be played on the weekend. All of Mark's family is musically talented and would gather together to share their passion for music. Football was played if the weather cooperated, walks and intimate talks amongst each other would take place. In general it was a catch up weekend, to learn more about each other and our lives as the fast pace of daily living was stopped to gather together. There was a final goodbye, with a cup of coffee and bagels on Sunday morning at Mom's house. Bradley goodbyes are long and the standing joke is to start your goodbyes at the beginning to get out in a timely manner. We would gather to sing a goodbye song and stand outside waving as Uncle Richie drove away, tooting his horn playfully.
So, as you can see, Thanksgiving was and still is, the big Bradley gathering. The demands on other holidays have never been there. We have spent all 25 years of our marriage with Mark's family on Thanksgiving. I believe I have only missed one time, because Gwenn was quite sick. I stayed home with her, so Mark could still be with his family.  Thanksgivings have changed over the many years. Aunt Dee passed and Uncle Richie remarried, Jackie, a wonderful person, who has embraced the holiday also. All of Mark's siblings married and had children, our kids have grown and a few now live in other towns, attending colleges or in careers and are not always able to come home on Thanksgiving. Cousin Randy married and hasn't made the trek every year because of other commitments with his wife, Tammy. Uncle Bob and Aunt Joyce find travel in the Winter difficult as they age. We have held Thanksgiving at a variety of places over the years, as our crew got bigger and Mom's house got smaller. My family (siblings, nieces, nephew, etc) has joined us upon occasion, as have other in laws, but the core of the holiday is still the same, the Bradleys and the Valles (Mark's Mom's maiden name) gather together for at least a part of the Thanksgiving weekend. Much food is eaten, music is played and bonding happens.

Mom passed on December 13th, of 2013, just after celebrating her last Thanksgiving with us.
The message from her was simple, she told Mark ~ "life is short, eat pie for breakfast and on Thanksgiving have a piece of pie for me."

~to be continued....

Wednesday, September 9, 2015

Day Date to Lily Dale ~ part 3

As we walked, we talked about our experiences. I was surprised by how different they were, somehow expecting there to be a method followed. My healer prayed over & with me. Mark's seemed to ask him more questions on what he "needed." It seemed appropriate we got who we got, no accidents in life has been one theme I've seen again and again! Anyway we chatted & walked, Mark suggesting we check out the forest temple & then a path to the beach. Mark & I are both water lovers. Walking toward the beach, thoughts of times on bodies of water & beaches come to mind. I know if we had the money, a place on a lake would be both our dream. Mark likes lake swimming more than ocean swimming, maybe because we grew up in the Finger Lakes area? Much of his Summers were spent at his Aunt & Uncle's cottage on Canandaigua Lake. I know Mark likes the cold calm of a lake, I love the sand & waves of an ocean, but lake living would suit me just fine! Anyway, as we approached the water, my cell rang. I recognized the name and number and even though we were on a date, I answered. Curiosity had the best of me, it was a call worth taking and I'm sure in the future I'll end up sharing more. Mark was patient as I took the courious phone call. He waited & researched our day in the pamphlets we were given at the gate. That has always been Mark's "thing" in our relationship, he researches & plans our days, I tend to "wing it more." We compliment each other well, because I get him to be more spontaneous & he gets me to plan. There are other parts of our life where I am the researcher & he is more the "wing it" person, but when it comes to vacations, Day Dates, or just an activity with the family, he tends to research. So, by the time I was off the phone, he had much figured out. We walked back toward the main area in search of lunch, as we were both pretty hungry. Our first stop was a coffee shop, which, much to my surprise had many gluten free items (I'm Celiac) but we quickly realized one of our mistakes, we had forgotten to get cash. I had known cash was needed, but it slipped my mind on our way out of town & neither of us had much. The cafe people directed us to an ATM. After getting cash, we decided on a lunch spot, the coffee place seemed better for dessert, so we went to Monika's Delights. We had a nice meal outside and talked more about what was next. There was a group meeting at Inspiration Stump at 1pm, so we kinda needed to rush to get there. There would be several mediums brought up to the stage and they would do short demonstrations of medium readings of audience members. I so wanted this for Mark. He had really "given into my desire" to come to Lily Dale and my deepest hope would be for him to get a message from his parents. There were several "messages delivered," but during one of them, I was especially moved. A woman in the audience who had lost her son, Peter. Peter had a message for her that he was well in the afterlife. The illness that plagued him in this life here, was gone and he was free of the constrictions of his body. Details were kinda vague, but it was apparent he had been disabled, I believe from birth? The thoughts of losing Teale have been stronger over the last few months than in any other time in recent history. Her sudden diagnosis of kidney failure had taken both Mark and I aback. Teale struggles with much both physically and mentally, but I would not consider her medically frail. The scariest medical issue is her seizure disorder and that has been stable for years. She has always been at risk, because of medications, mainly the Lithium, for extreme illness and even possible death, if she caught anything severe, like a flu. When we made the decision to put her on Lithium all those many years ago, we were intensely warned about illness. Teale's ability to fight a bad infection while on Lithium would be very difficult because of the way it can very quickly dehydrate a person. The flu, every year, has been a huge fear in our house. Her pediatrician and I have a very close relationship and he has been vigilant about Teale's care since the day I met him. So, at the slightest time of concern, it is him I contact. Dr Dave is our rock, he has returned texts on Sunday mornings, he has called me way late into the evening or much before office hours. The instructions have always been very clear since leaving the psychiatric hospitalization with Teale as a six year old, if she shows signs of any dehydrating illness, we are to go to the emergency room at Strong hospital ASAP. She can not afford to get dehydrated on Lithium because it would be a very quick decline into critical, if she did. The fear of the flu, every Winter, has haunted me and yet, somehow, we have kept her healthy! I could try to claim it's because I am such a good housewife and my house is free of germs, but anyone who knows me, would know I am BSing you. I am, though, pretty vigilant about hand washing. Leaving public places, in my car, etc, I use hand sanitizer often. Coming into our home, especially in the Winter/flu season, I push everyone to wash their hands  before touching anything. My line has always been, "we can not afford for Teale to get the flu." It is one of the few ways I felt I could control the likelihood of an illness coming into my family. I doubt I will let up on that now that she is off Lithium, after all, it has possibly worked for ten years! Back to the women getting the message from her son. I was moved to tears listening to the message, everyone's biggest fear is to lose a child and it was obvious this loss was horrific and life changing for this woman. I remember memorizing her look, knowing I hoped to approach her and share a hug, one special needs Mom to another. The bond between parents like us is unspoken, but very unique, strong and real. Only "we" truly get the pain we feel on a daily basis. I so wanted to acknowledge this woman's loss and if she wanted to, hear more of her story. Unfortunately, that encounter would never happen, but that women in the yellow shirt, with short gray hair, has been on my mind much since.

~ to be continued....

Saturday, September 5, 2015

Day Date to Lily Dale, part 2

The rest of the ride went quickly, we were there just in time to go to The Healing Temple before the session was over. I was glad I got that advice or we would have missed the opportunity. Rushing to The Temple, I really had no idea what we were about to experience. A beautiful tree greeted us and as we got closer, I realized it was draped with short, different colored ribbons tied together. Some of the ribbons had writing on them, mostly names from what I saw. Walking inside The Temple, a women approached us with a gentle voice, explaining there were three people ahead of us. We explained it was our first time there and she explained further the process, that we could sit and watch, deciding if we wanted healing. Mark and I are no strangers to "out of the box" healing methods. After we discovered Teale's issues in utero, we had many different "healings" done. I saw a massage therapist many times who did "laying of the hands on me'" and our most unique experience was to attend a Native American Indian healing in a round house. Many people "laid hands" on my stomach and then told us about our very special baby inside me. Their "visions and messages" about Teale (and from Teale) were very accurate and we still refer back to that time, amazed at the experience. So to walk into this Temple, I knew we would both be open to a healing. We watched, read the pamphlets on the best ways to receive the healing and when the woman came to ask us if we wanted to go, Mark took the first spot open. I didn't have long to wait, until another spot was open. As the women quietly spoke to me, she asked no questions, but prayed with me, my hands in hers. I could feel that she understood me and the worry my heart has been holding. Then she let go and with my eyes closed she began moving around me, hovering her hands over different parts of me. I was aware of where she was, as sometimes she softly touched me or sometimes she just "hovered." Suddenly I was overcome with emotion, tears welled up in my closed eyes as I tried to concentrate on "receiving the healing and being calm in spirit and mind." I struggled though, as I could hear quiet sobbing and felt the pain of that person. Interestingly, after the healings were complete and I asked Mark about this, he had not heard the sobbing and I never saw who it was. My experience was fairly short and very emotional, I felt a release of pain I have been trying hard to surpress. The last few months have hurt my spirit in many ways. A loss of hope and confidence for Teale's medical well being has created much fear in me that I have found difficult to express and admit to anyone. The truth is, I have been scared, far more than I had ever been before, that I was losing my Teale, slowly. The tears fill my eyes as I type this, the pain has been kept deep inside me, terrified if I admit my fear, it will somehow come true. So as the tears ran down my face, the release of fear seemed to leave my very soul. Mark would share that he felt a surge of energy as his woman laid hands on him, but for me, it was all I could do to not sob, like the woman I thought I heard.

to be continued.... 

Friday, September 4, 2015

Day Date to Lily Dale

Mark and I took a Day Date to Lily Dale this week. It had been on my bucket list for years but the couple times I mentioned it to Mark, the drive seemed too daunting to him. Two hours away on a precious Day Date means four hours of the time spent in a car. Somehow I knew he didn't really want to go, yet the urge in my heart was strong and well, if I really want to do something, good luck holding me back! Mark and I run our marriage this way, we always have, the most passionate about something, wins. So I asked Mark to take off a day that we would have until 6pm, because Teale would be in school and then at her after school program, we picked her first day of school, September 2, 2015. Getting her on the bus was easy. Teale loves her school and was happy to go see her friends, add in the fact  she got a favorite ex-bus driver back to take her and she was thrilled! After she was safely off, we packed up a few things and hit the road, just me and my best friend, off for the day on an adventure. I was super excited, knowing in my heart Mark would enjoy the day also. We hadn't prepared real well, I had looked at the website and so had Mark, but I didn't really understand how "it all worked." A few friends gave us advice and I had called a medium, inquiring about possibly doing a couples reading. The woman was very helpful and actually ended up discouraging me from setting up a reading. Her advice was to get a "healing" done at The Healing Temple and go to a few of the group readings. She said there was a lot to do and for the first visit, we may want to just explore. She really could not have been more correct in the end. The two hour drive went quickly, there's not much I like more than being "stuck" in a car, with Mark to myself. We talk easily and the time to "catch up" is precious to me. I never feel like there is a lack of things to talk about, our family is complicated and we both have much going on outside of each other. I've never truly gotten over the fact that we no longer work together. Our days doing daycare together were so much fun and I still miss the continuity of that life together. Often I am scamming, (at least in thought) trying to come up with a new way to work together, but alas, I lack the all important college degree. Anyway, the car time, to me anyhow, just seemed to fly. We made one quick pit stop at a unique rest area on the NY State thruway that brought back memories of car trips from years past. The rest area is actually in the medium of the thruway and you walk in an inclosed bridge to the center from either direction. As soon as we pulled up, it sparked memories of trips we have taken in our twenty seven years together. We have a lot of memories together and as we age, it's funny and ironic how difficult it gets to pull those memories back up. Much pre - Teale is lost for me, she takes so much of my thought and my energy, it's almost like I let go of memories before her to make room for the many medical and educational things I need to know. As we walked the bridge to the middle of the thruway, some of those old memories started flooding my mind. Moments like those are so bonding for me. The years we have spent together are what strikes many, (we are fairly young to have been married 26 years) but for me, it's all the fun we have managed to have in those years, amongst the challenges and the pain. Mark is truly my best friend, it may be cliche, but he is my rock. Mark is the person I most admire, respect and love. We know we are Blessed, we know we are unique, so the trip to Lily Dale was bound to be special.

to be continued...

Tuesday, September 1, 2015

The Irony of Humor

Laughter has gotten Mark & I through much. We are both a tad twisted and laughing at our circumstances helps us to keep the tough stuff, light. If we let the pain and frustration take over, we drown in misery. Finding humor in life is our way of coping, but not everyone would agree with this. Many months ago, a man who I had known 12 plus years, a man I had welcomed into the most intimate parts of our family, failed me. He had been a rock for us, a person both Mark and I trusted and deeply respected. We have had many loses in this life with Teale, services for her are constant and ever changing. We've walked this road with specialist after specialist, many for only short periods of time and then they disappear from our world, leaving me to wonder if we made any impact on their lives? People come and go in all our lives, but possibly more so in the life of a child like Teale. From the very first moments we found out her "issues," Teale and our family has been surrounded by people who "knew more than we did." Specialist were brought into our world constantly. These people  often brought us hope but sometimes, they brought us to our knees, explaining sad realities about Teale and her future. The information we were thrown by these professionals (doctors, therapists, teachers, education administrators, behavior specialist, etc.) was often a mix of "what it is & what it may become." There are and have been so very many people welcomed into the very complicated folds of our family. We have shared our vulnerabilities with complete strangers, hoping for help in areas we struggle. Teale makes me think, not just a little, or once in awhile, but constantly. My mind barely ever lets go of how to improve on my care and in turn, improve Teale's quality of life. I am a Mother of two other children, who also flood my mind, but I can honestly say, they do not monopolize my thoughts the same way my middle child does.
So back to the professional who brought such pain. He was part of our lives much longer and much more intimately than any other professional besides our pediatrician. He was a trusted part of our team of support. I'm not sure I'll ever truly know what went wrong that day or why, but a regular appointment became a game changer that would have ever lasting effects on my family. Humor seemed to be what set the disagreement in motion. Humor, the very essence of how Mark and I cope was being questioned like we had performed some heinous act. Mental illness is a very difficult field of study. It is often very subjective, making the doctors in the field very powerful. Their opinions are but, in my opinion, just that, their opinions. If a family is thriving, judging how they thrive, is uncalled for. Mark and I are doing just that, we are thriving. Amongst the bad we have managed to keep a loving home, a strong marriage, friendships and even our own personal interests. Our two other children are also thriving, sure there are many sacrifices we all make, but to criticize how we cope, after years of knowing us, it was horrid how harsh he was. I'm not going into details and if you ask the name, I probably won't share. Many of the people who are close to us know the whole story. I can't hate him, he really was there for us for many years, but something "snapped" that day and our team was divided. A person I trusted was suddenly attacking my husband and myself. So as I calmly stood up and told him I was leaving, "because he wasn't himself," I won't deny, my heart broke a bit. I was walking out of his office, but I also knew I was walking out of his life. Humor was at the core of it, humor was being questioned, like Mark and were very mentally ill for being able to find the the good and the humor in our very complicated family. I'm still confused by that day. But since then, there have been many changes for the good. My walking away, may be the reason God put me through that pain, maybe it was part of a bigger plan? Maybe change was needed to complete it? Another loss in the professional world, but I refuse to view it as a loss. It was a relationship that served it's purpose and then suddenly, it no longer did.
I learned much from the experience, but probably the biggest things I learned are; how powerful I am, how strong we are and how little all those professionals really know.  Mark and I are the only ones who truly matter. We are the glue that holds the family together...

Sunday, August 30, 2015

Strong Willed

It's been several weeks since the nephrologist threw at me the words "kidney failure." The shock in that moment, more pain than I could share. It took me days to process and move forward. It took weeks before plans got set and we knew how we would begin to get our daughter healthy again. There were no guarantees, if anything, the doctors were actually preparing us for the worst and not giving us much hope. Would her kidneys heal? Would she be able to live a typical, healthy life or was this the beginning of a very long and painful road? Mark and I have faced fear before, fear of not being able to keep Teale healthy and stable has been a constant for both of us. I mostly struggle with whether I'll be able to continue to give quality care to my daughter without risking my own wellbeing? She's much bigger and quite frankly, stronger than me. I often think about if I can keep up this level of care, forever? But, if you know me, I am nothing, if I am not strong willed! I believe that's just a nicer way to say "stubborn and strong!" It's gotten me through this life with Teale though, so I'm not putting a bad spin on the words. A weaker soul may have crumbled under the stresses. For me, it just made me dig in my heals and fight harder. Teale is much like me in this way, "strong willed," has saved her life and brought her through many challenges. So here we are, weeks later, through, what I hope, was the worst of it! Teale seems pretty stable, mentally & physically. I'm hopeful some healing has taken place and we can put the words "kidney failure" behind us. Now if I could only get past the feeling of "what is next" in this incredible journey as Teale's Mom? 

Friday, August 21, 2015

When Fear Overrides Faith (part two)

The daycare changed, life changed. Our focus was tough to miss, our daughter became a job within herself. As time consuming as a baby is, nothing compared to the amount of work it took to care for Teale. She was in the NICU for two months and all the while we still cared for all the other families we had in our daycare. Coming home wasn't much better, doctors, therapists, meetings on early intervention, sleepless nights, tests, doctors and more doctors. It was hard to believe this tiny infant needed so very much. We were run ragged and if I had it to do over again, well, it might be different. I look back on the early years, the beliefs we would change what the doctors said about Teale and I wonder, did I need to fight all those fights? I believe she is far better because we fought hard for her and exposed her to much, but I also wonder if I could have sat more, loved her more and just been present, as a Mom? Did I need to argue for that extra half hour of sign language instruction? Did her PT coming four times a week instead of two or three make a ginormous difference in Teale's abilities? Could I have done more, done better, could I have tried more homeopathic remedies, could I have traveled far and wide for healing? Life became about Teale, it became a lot of work and thought to parent her. Our family focus was on making her the best we could. I often wonder how Beau survived, how our marriage grew, how we didn't all retreat into ourselves and the loss we all experienced. Were we kind to the many people who held us up? Did we thank you? Did you know how much we appreciated your rides to the hospital, your home cooked meals, your visits? Did you know you were not just helping, but you were holding us together, like the duct tape of life? There was so much love offered to us, it's tough to recall, all the gifts, not just material ones, but especially the prayers and the time given to us. My sister took endless vacation days to help us in our daycare so we could go to the countless doctor and educatioal meetings. It wasn't like we just needed a couple months of help, we've had crisis after crisis and every time, people have stepped up and helped us! I think about how shell shocked I was in some of those crisis times, often I became stoic, just pushing through. Did I thank you, did I even acknowledge your sacrifice for my family? I wish I could go back and tell each and every person who showed up on our doorstep ready to roll up their sleeves, how very much I believe you are the people who changed what Teale could have been, to what she is. The prayers from near and far, the notes and words of encouragement, they lift us and keep us going. When my faith falters, my friends and family lift me. My fear was more than I could even put into words this past Monday. Teale was horrible, she was edgy and uncomfortable in her own skin. Her anger constant. I was looking at a school break alone with her and the fear was taking over my faith that I was going to be able to do it. I then asked for prayers on Facebook and whether you believe it or not, I believe that was a game changer. This week has been nothing like I feared. Sure there were a few tough moments, but faith finally took over for the fear I had felt. Faith has carried us through so many challenging times. Mostly because so many of you, believed in us and gave us faith in ourselves. I know I owe so much to so many and quite frankly, I also know our needs for support will probably never end. Keep the faith friends and when you can't, just know you can reach out to others and be lifted until you believe again.

When Fear Overrides Faith

When fear overrides faith, I woke realizing that was what had happened to me on Monday. The kidney issues, possible failing kidneys, possible Diabetes Insipitus, had brought my husband and I to the only choice of weaning Teale off Lithium. We had to wean Teale off her Bi-Polar medication she had been on since she was six years old. Lithium was the only medication we had known for the last ten years. We knew she needed a slightly higher dose during typical times in the year that Bi-Polar people went manic. We knew it had stabilized her and brought her back to us. We saw hope in Lithium, we saw peace in our daughter. We knew the side effects, we knew the warning signs if it was too high or too low in her system, we knew Lithium. Life without Lithium seemed pretty much unfathomable.
So when it was first suggested that Lithium was the cause of physical harm to Teale, we had to make what seemed like a choice between, mental stability and physical stability. We chose physical, hoping we could also someday get her back to mental stability. For both Mark and I, it was an obvious choice, but with this decision, I believed we were in for a very bad ride on the mental health roller coaster. I believed it could be an extremely long time before we achieved the mental stability we had finally achieved about five years ago. The cocktail of drugs (medications) Teale took was specific to only her. The Lithium had helped, but it wasn't until we found an antipsychotic medication about five years ago, did Teale seem the best she might be able to be. It's never been perfect, but if you knew Teale before medications, you know we made the right decisions pursuing the right combo of medications.
Our journey to get Teale mentally stable started when she was about four years old. The explosive behaviors were confusing and tough to manage. Her violence was dangerous and very scary. Doctors "admitted" children with cerebral palsy can have a very tough time regulating moods. With the brain damage being so severe in Teale, no one was sure "what these violent outbursts were?" It could be seizures, something she was not in control of. It could be just the inability for her body to regulate moods because there was no connection between her two lobes in her brain. It could be frustration, over her lack of good communication? It could be her lack of using her right arm caused frustration and anger? There were hundreds of things thrown at us, mental illness, our parenting, her need for more structure in her life, being in the wrong program, our lack of learning sign language fast enough, seriously, the list was endless. Of course the most difficult possibility was that her explosive behaviors were somehow our fault. Blaming Mark and I seemed like the easiest, most obvious answer for many around us. Statements like, "All she needs is a little discipline" will forever run through my head, destroying my confidence. It's hard to believe I took such a cruel, ignorant comment to heart, but Teale was my first crack at a severely brain damaged kid. She was my first child with Cerebral Palsy, Epilepsy, profound hearing loss and a diagnosis of being legally blind.
My girlfriend recently drilled a statement into my head that I think about much, "You only know, what you know." A child like Teale, I had never known. Let that sink in. I had a child I had to try to figure out, without the knowledge of child development helping me. Mark and I had run our in home daycare about ten years when Teale was born. I had been a Nanny, a babysitter, an Aunt, for years before that. I had over fifteen years of working with young children, years of a deepening understanding of the "proper" ways to help develop confident, happy, well adjusted children. I took several child development classes, I read many articles and several books. I educated myself in new ways to help achieve success in my chosen career of childcare. I wanted our daycare to be nurturing, safe, loving, a well run home, where children could feel free to be themselves, so long as there was respect for others. Our daycare was an extended family, each and every child there had a piece of Mark and my heart. But then Teale was born....

(part one)

Monday, August 10, 2015

The Path to Health

Is there anything more exhausting than worry? It consumes and shows it's ugly head in so many ways. For me, worry pops up in my sleep and eating habits, I sleep less and I eat more. I look for energy in foods that ultimately just drain me of energy. I crave sugars and mostly "comfort foods." Right now I hate my body and basically that feeling seeps out in many ways. I'm so uncomfortable in my own skin and find it difficult to dress daily. Right now, not much fits me, so I stare into my closet of clothes wishing I could wear this or that. I've heard cortisone levels go up with stress, I kinda doubt mine are ever "normal." There are few, if not, no times, in our life that there isn't some amount of extra Teale stress going on. School breaks are tough, holidays are tough, everyday living has many unforeseen challenges. Everyday tasks that need to be accomplished with Teale, can be fun or they can be a nightmare. Her moods change on a dime. She is sweet and cooperative one minute and the next she could be raging for what appears to be "no apparent" reason. I'm a stress eater, always have been. I guess I make excuses for my stress eating. My mind makes excuses ~ "Eating is better than some of the other bad habits I could pick up." I've seen much alcoholism and many drug addictions in my lifetime. I've also seen a lot of generally miserable people, lost in their own worlds of depression and self medicating. Maybe they don't have support or love? Who knows why some of us deal with life in one way or another? I often feel blessed because I have Mark, he helps keep my spirit from falling when the pressures mount. He doesn't criticize or judge the many thousand times my body has changed in the course of our lifetime together. The only thing important to Mark is my well being. He loves me and shows that deep love always. The catch though, is that he knows I am happier when I am healthier and a size I am comfortable in. So as we go through all the new medical and mental issues with our daughter, I have decided that as stressful as it is to get back on the path to healthy, it is more stressful, not to. 

Saturday, August 8, 2015

3AM

I think this is the third time this week I've woken at 3AM and could not fall back asleep. The other two times I ended up on my phone reading news and scanning FB. I know getting on a device can just cause you to stay awake, so I usually avoid it for awhile if I'm awake. But my mind was flooding with scary thoughts, so I figured it was a distraction. I'd get sleepy again, set it down and then my mind went back to my fears. I'm not sure how Mark is sleeping, maybe he's waking too, during the hours I sleep? I lay there listening to him breathe, thinking how grateful I am to have him as my partner. We've been challenged much, but it never effects "us." We are still able to have fun when given the opportunity and be a comfort to each other. It's been a rough month or so, finding out our daughter's kidneys are failing, that she is probably struggling with a condition called Diabetes Insipitus and knowing we must get her off Lithium ASAP. She's been on Lithium since she was a mer six years old and for the most part, it's been a good medication for her. Her first manic stage was horrific, at six, she only slept approximately two hours a night. Because of her severe developmental delays, one of us was up with her at all times. The exhaustion built up and we were barely functioning as this continued and days turned into weeks and months. Of course her doctors were working with us this whole time, but you have to understand, sleep deprivation causes your mind to not believe everything. We questioned whether we were crazy and she was sleeping more than we reported? We tried several sleeping medications under her doctor's care, but still she was awake and functional all but two or three hours a day. Mark and I doubted ourselves as the sleep deprivation took hold of our minds. It was like we were in some conspiracy theory, other people doubted what we were saying, doctors, Teale's school, friends, family. No one could believe she was only sleeping a few hours, yet had so much energy day in and day out. You stop believing yourself when no one listens or you just stop even trying to tell the truth. We were sure, sooner or later, she would HAVE to sleep and or one of the many medicines would work. It wasn't until Teale started having unique seizures during the day at school that anyone finally really took note that something was wrong. Sleep deprivation causes seizures in people with Epilepsy and Teale had never had day seizures. He brain damage has somehow only shown it's ugliness at night, once she is in the sleep cycle, her seizures appear. At that time in her life, her seizure disorder was not well controlled, but it was not out of control either. Day seizures and the type she was having were totally different from her normal. In seizure disorders, generally people only have certain kinds. If the seizures change, it causes alarm, so at this point doctors were concerned and realizing we needed a better plan. I knew Mark and I were at the end of our rope, working all day and watching Teale all night was frying us. I remember turning to him and saying, I know I won't do it, but I'm as close to suicide as I could be. The whole truth was that I was fantasizing about taking Teale and driving into a truck or something, to save Mark from the pain of life with Teale. I knew I was getting psychotic because it all made sense and seemed merciful. Sharing that with my husband and Teale's doctors got action. They decided we had to hospitalize her, so someone else could evaluate her 24/7 and so we could sleep. This is why my fears are so high right now, ever since that hospitalization, Teale has been diagnosed with Bi-Polar Disorder and was put on Lithium. The Lithium worked and our daughter started to sleep again. The validation that she was not sleeping helped Mark and I immensely. We no longer thought we were the crazy ones and understood our daughter's severe brain damage had caused mental illness too. It would not suddenly be easy with Teale, but it certainly helps to know what you are dealing with to treat it. Ten years later, her kidneys can no longer handle filtering the Lithium and we are weaning her off. It's ironic my fear is showing up in inability to sleep. I know Mark and I are stronger, more educated and we trust ourselves much more as people and as Teale's parents than we did ten years ago. I know we will make the best decisions and we will survive. I also know, I'm scared, I'm mad at God for allowing Teale to suffer more and I'm tired. So if you get the chance, please lift us in prayer, because in my heart, I know I will feel your love and support and Teale will be ok. 

Monday, August 3, 2015

Sharing, just because, her smile is contagious!




Sometimes you just need to see the joy....

Special, Even in the Special Needs Community (part 2)

Trying to figure out how to do that, I suddenly knew I was in deep. I grabbed her arm into a twist behind her back to lead her to the couch. I knew Gwenn was in danger if I didn't act quickly. I was picturing cookies flying, Gwenn and her friend attacked, maybe a counter 'being cleared,"my strength grows in such a moment. Protecting others has always been Mark and my main goal. He and I can take the physical and mental abuse, but we never want her to "get others." It may be because we know her attacks will pass and in the end, he and I still love her just as deeply as before the rages. The thing is, we just don't know if others are capable of that kind of forgiveness? I'm sorry to sound like a martyr, that is not what I mean, it's just that Teale is ours and we get the pain she lives. Often in those horrific rages, my mind goes to picturing her brain scans, they are severe and picturing the compromised brain helps me to remember compassion and love and most of all, forgiveness. This is not her fault, she didn't choose this life and neither did we. Doctors's errors caused her brain damage and those doctors, well, they have no connection to the pain we live because of incompetence. I grabbed her arm to lead her, but she whipped around and tried to bite me, so I had to grab the back of her head, her long thick hair in a fistful. That way her face stayed forward and I could lead her out of the kitchen, past potential hazards and to her safe place, the couch. It's an awful way to treat a human being, but we could get severely hurt if I am not strong and firm while getting her safe. In those moments, I have no choice, I must use all I have to keep us all safe. Sometimes Child Protective Services goes through my head, Mark and I have been in situations where our care has been questioned. Our doctors would and have backed us, but still, it feels wrong to have to grab my 16 year old daughter like that. After all I'm an ex daycare provider/nanny and one on one special education aid. I've been trained to always keep an eye out for signs of abuse in children and I've been a mandated reporter. The difference with my situation is that there is NO FILTER for Teale, once her rages kick in, getting her to safety, even if it is forcefully, is the most compassionate way to help her. So, that day, I got her to the couch, strangely, once there, she goes after me, much less. She will bite herself, scream and rock back and forth on the couch, but generally, she will stay there. She will try to grab whatever she can to throw at me, so we try to always keep the area sparse. That day she went for a photo book, I was picturing it flying at my face or her tearing the pages, so I went in to get it away from her. As soon as I did, I was the target, my face was gouged, almost getting my eye and I narrowly avoided a bite into my arm. After pushing her face away and getting out of her grasp, (which left all five finger print bruises on my arm) she managed one last good slap on my chest area, her whole hand print showing immediately. The next week I would be getting a mammogram and I knew the bruises and gauge on my face would raise a red flag. I've had the questions before, "Are you safe at home? Do you need help?" Awkward, to say the least, I've wanted to answer with a "No, I'm not safe!" because the truth is, I am not always safe, but they mean my sweet husband, so I explain Teale. Anyway, all of this goes through my head as I pull away and listen to her screaming. "Stop looking at me!" She screams repetitive phrases over and over. "I want my iPad back!" "You hurt me!" Many phrases are tried and true, she repeats the same ones in rages. Her arm is bloody and raw from her biting it badly. She starts another diversional tactic/phrase, "I need ice!" I answer with "Yes, after you are calm." I can't leave the area, she will destroy if I do. Teale has broken many things over the years, much I truly care about is tucked away, someplace safe. Then the "I'm DONE!" usually starts... My heart rate feels like it is increasing just writing this, PTSD from way too many rages. Fear kicks in, but I'm strong and I've done this many times, so I stay alert and near her, trying not to engage with her until the calm sets back in. Often, I just pray, because "if God leads you to it, He'll lead you through it," but sometimes I hate God for what Teale lives. I waffle though, there are other times I believe everything has a reason and I can see the good Teale has brought me. As I stood there waiting for her to calm, I could feel the sting of the gauge on my face, it was n a tender area, right under my eye, the warmth of blood dripping and seeing the look on Teale's face, the realization she had hurt me was in her eyes. She knows it's wrong, to some extent, but in those fight or flight moments, she has no control over herself. That may be the biggest statement I say to myself, as I watch her suffering, it's not her, it's not her fault. I'm pretty darn calm, most of the time, I've snapped, but the few times I've reacted, ie,  to being bit & slapped her to release me and/or out of the shock of the pain, I have felt like I was two inches tall. She's brain damaged, I'm not and should be able to keep my decency. So, I mostly I rely heavily on God. I'll also text Mark or a friend for strength and sometimes I'll post on FB, hoping prayers will lift her & me through the crisis. At some point in the middle of this rage, Mark finally heard the screaming and came to check on me. Beau had heard Teale through the open windows above the noise of the mower and the weed whacker. It always sounds like we are killing Teale, even if we are not laying a finger on her, to say she has a loud voice is an extreme understatement. The windows being open is often a huge embarrassment, you wonder who hears her screaming, you wonder if the cops will show up? So as Mark stepped in, covered in grass, sweat and dirt. I looked at him and he saw the blood under my eye and the bruises starting to show. I told him to just go back to finishing what he wanted too, because at that point, she was calm enough. Also, I try to maintain strength in front of Teale, I can't have her thinking that I can't handle this without Mark. I need her to know I will see her through these battles and I will love her still... So the calm finally set in, there is a change in demeanor that tells me we are safe again. We then pick up the pieces and move on. This is life with Teale. 

Saturday, July 4, 2015

Special, Even in the Special Needs Community

Even in the "special needs" community, Mark and I have often felt "special." This past week has proven that feeling much. Teale was enrolled into a day camp with all special needs children this past week. Two of the five days, transitioning from us, to staff was not very pretty. Teale has always had far more behavioral outbursts with Mark and I, than with others. Her connection to us is strong and often with children, the worst behaviors are with those they feel the safest with. Having a daughter with severe intellectual issues, just exasperates this. What goes through Teale's head is anyone's guess, her rages don't always seem to have a rhyme or reason. Sometimes we can tweak it out to be caused by miscommunication or anxiety or exhaustion or even an illness not yet detected, but more times than not, we are only guessing. Teale was sixteen years old in December of last year, she is approximately four inches taller than me and far outweighs me. The inability to use her right hand is both a Blessing and a curse. I have often felt she would probably rage less, if the frustrations of only using one arm and hand were eliminated. I have also thought, thank God I only have one arm to protect myself and others from. When Teale rages, she has no filter and often goes after anything and anyone who is in her way. The attacks on me have been very scary and violent as she has aged. I have been fearful for myself and "our property," because I am not always able to predict her next move when she goes into these rages. She recently got me pretty good on my face, close to my eye. My eyes are often my number one concern, trying to keep myself safe, when she is angry, can be like wrestling a grisly bear. I often try to have a hands off approach to Teale's anger, but only if or after I get her to her "safe place." We have established our living room couch as the safe place for Teale's rages. If I can get her there safely, she often can calm herself. As you might imagine, getting her there is not always easy. We have the living room set up pretty simply, there is rarely much she can grab to chuck at me, once I get her onto the couch. Unfortunately, as I've said, life is unpredictable with Teale and we are not always vigilant about keeping the safe area, safe. An instance that happened recently started in our kitchen. Teale and I came home from a fun Birthday party for her girlfriend. Leaving any gathering or the end of any event is a horrible time for Teale. She does not transition easily or well at the end of something. Goodbyes are very difficult, I can not even begin to tell you how many family gatherings, parties, festivals, etc. we have "run from, with our tails between our legs," as Teale's behavior suddenly hits a wall. Anyway, as I said, we had just left a really fun Birthday party and true to form, Teale was very much on the edge of a meltdown. We arrived home to Mark and my son, Beau cranking on lawn work, Teale ALWAYS wants her Dad, so she got more edgy when I told her he needed to finish what he was doing. Then it happened, we walked inside to find Gwenn and her friend making cookies, in what Teale thinks is HER kitchen. Teale gets possessive over rooms in our house, for years and years it was the living room. She would meltdown if we came home to a sibling in the living room watching TV or on the computer. She would yell at any of us to go away, stop watching her TV or just wanting to sit on a couch in the living room. We tried for years to teach her that the living room was for everyone, we had several behavior specialist into our home to help us, yet, nothing ever really worked. Now it is the kitchen she thinks she owns, she sits at the kitchen table playing on her iPad and often growls at, gets angry at or starts to meltdown with family members being in "her space." Coming home to Gwenn and her friend, was the straw that broke the camels back, so to speak. She starting amping up and I knew I needed to get her to her safe spot on the couch before it went really bad.   (to be continued...)

Tuesday, June 30, 2015

My Only Hope is to Outlive Him

Yesterday I had another blog flooding my mind.
I often go on rolls like this when it comes to blogging, thoughts flood me and I write feverishly for a few days or a week and then its gone and my mind rests.


I had woke with a thought that only parents of special needs kids can understand, the pain and desire of wanting to outlive our kids. 


I'm not sure why it ran through my head, I remember thinking "only my friends, who also have a special needs child, would understand." Then as I waited for Teale's day camp bus to return, my friend said it. She and I were talking about our kids and who they have in their lives. I shared the fact that Gwenn was truly wanted, but Gwenn was also a tactical move in our life. The thought of Beau being alone with Teale after we were gone seemed unfair. Beau would need a sibling, someone else who understood and could help with Teale's care. I also wanted Beau to have a typical sibling to have a relationship with. I know Gwenn is aware of this, she was a risk, both my births were rough and I also needed her. I remember the moment I said it to Mark, "I feel like I will always regret not having a third." Mark being Mark, was slow to respond, but thoughtful, "I don't want you always living with regret." Gwenn has been both a blessing and one of my biggest challenges in life with Teale. Their relationship is practically nonexistent right now. There is hope it will improve with maturity, but Teale is just awful to Gwenn.

So as my friend and I waited for the bus, we chatted about our unique families and the challenges we face. She talked about how out of sorts her son is on "down times from school." I told her how Mark has said for years, he would rather work seven days a week, if it meant Teale was in school seven days a week, because weekends can be just that tough. We talked about how most people live for vacations and weekends and we live for school/work days. Then in our conversation about who will be there for our kids as we age, she said it ~ "My only hope is to outlive him." I wasn't shocked and told her I think the same, but this could "only" be said by parents like us, to each other. My typical friend parents are probably cringing right now, in shock we actually discuss such things. I said ~ "Yup, I don't trust the world with Teale after I'm gone."

I bet if you are a parent of a typical kids, you have never had such a thought. Sadly we both truly believe it is rational. This is one of the "things" that haunts us. We live with the fear of what if and what if "not." 

Monday, June 29, 2015

You Just Never Know

I sat in church yesterday thinking about the name of my blog "We are God's entertainment" came from my son. I actually explain how it came to be in my very first blog post. Deciding to write was cathartic, getting things out helps me to process and let go. If you are FB friends with me, I do the same there, in a "faster, less wordy way." Sharing has been my way to bring people into our life of special needs. It is a way to give a taste of a household, you may have never known otherwise.
When I sat in church yesterday, after many weeks of not going, I thought much about our journey. The preacher, Glenda, was a guest, a member of our church and a dear friend of mine. She was my very first connection to another Mother of a child with special needs. Her daughter, Katherine was a regular when Mark and I first started attending church. Glenda had asked me to come to the service yesterday, because of our connection and because of my last blog post. Glenda isn't one to mince words either, it's a heartbreaking journey being a family member of a child who is constantly challenged in life. Glenda lost Katherine a few years ago and the pain from that loss is always just below the surface.  Her sermon clearly stated this, she talked about how miracles in the Bible give her pause and enrage her. "If we believe enough, our prayers will be answered." Glenda knows I struggle with this too, we've discussed it in depth much.
There is plenty of guilt being the Mom of a daughter with severe disabilities. I will always wonder if it was me, something I did wrong, something I could have done? My husband, Mark, has tried to quiet these fears for well over sixteen years, but they are never far from my thoughts. Then you add in stories of great faith and healings and I wonder, is my faith not great enough? Glenda spoke from her heart yesterday to a small crowd at church, on a rainy, cold Sunday. I understood her words, I totally got what she felt, but did all of the small crowd that gathered? Did the family whose children grew at a normal pace and achieved success as an adult? I would like to say "yes" because Glenda and I have not been shy about sharing our stories and hopefully, that has changed some hearts?
Sitting there, in my church, I was struck by the number of people who have touched my family. We were brought to this small church, long before Teale was even a thought. Mark grew up there, with his Mom and siblings. Much of his life changed after the sudden death of his Dad, when Mark was only two years old. This church rallied around his family, I've heard many stories of love and friendship in that time of crisis. I've lived those stories too, people who I didn't even think noticed my family, have done amazing things for us in times of great turmoil.
Not all that long ago, I was moved more than I can say, by words spoken to me. It was a typical Sunday and I had been on a really good roll of making it to church most weeks. Teale always accompanied me, she mostly sat quietly by my side. The members of our church know not to "push" interactions with her. Teale is best left alone to interact with you, if she chooses to. Mark came with me, when he could, but one of his bands practiced on Sundays, so this had become Teale and my time. Passing of the Peace is the toughest time to be at church with Teale, most know not to touch her or push interactions, but not all. "New members" may not know our story and may even see it as cruel that so few people talk to this quiet teen by my side. Anyway, it was during "Passing of the Peace," that the words were said to me. A woman I had probably always assumed was annoyed by my being there with Teale. You see, Teale is like a ticking bomb in church and there have been MANY EXPLOSIONS over the years. I'm sure there are people who would (and did hope) rather we just not bring her. I know when she was younger, it was a constant battle over heart and mind for Mark and I. He was easily embarrassed by her behaviors in church, I had more of a God made her too attitude, most of the time. 
So on that Sunday, a women I've know since the very first day Mark and I walked into his family church, as a young married couple, stopped me during the passing of the peace. She told me how much she admired me and that she had wished she had told another member, who had died of a heart attack much before her time, the same. In that brief encounter, her words were sincere and kind, as she shared with me how much she thought of my family and felt a pull to tell us. It wasn't a long speech, but it lifted my spirit and I think about it much. Honestly, I hope I do not offend her, if she reads this, but she truly was one of the last people I would have expected to hear that from. People put off different vibes around Teale, "uncomfortable" is a vibe I feel much. They don't know how to interact and so they ignore or look through her. I think Teale makes people see something they wish did not exist. It's painful and forces them to either act or run, many run. We've had family members tell us that they "just can't think about the amount of pain Mark and I live on a daily bases." So to have someone who I just "never thought" reach out to me and share her sincere care, well as I said, it has barely left my mind.
"We are God's entertainment," and I hope someday I will understand this journey better, but for now, my sincere thanks to the people who touch us along the way.

Saturday, June 27, 2015

The Child I Dreamt Of

There are many things about being a "special needs family," that suck. Yah, I know, my Mom never liked the word "suck" & for the most part it's not allowed in our home. I'm sure there are way more eloquent words I could choose, but the truth is, a lot "sucks" about being the parent of a child with severe disabilities. Even though I usually try to look at the bright side, often I find myself defending my family. Typical families like to compare our lives, maybe somehow they think I don't see the comparisons fairly?

First of all, did you know Mark and I did not want to be living this life? We had aspirations of normalcy & expectations of greatness as parents! Mark & I didn't decide to have a child that demands society notices us, we would have preferred to be a "typical, boring American family," that blends in. We were not looking for more attention and to feel more special ourselves by having Teale. Teale happened to us and honestly, I would not wish the stress that accompanies raising Teale on my worst enemy.

I did decide to be "out there," though. I decided to honestly share the journey, in hopes it helps or touches others. I came to the realization early in Teale's life, that I could either wither up alone or I could take what life gave me & use the opportunity to make all the suffering somehow worth it. The attention our family gets, well, I would love for it to go away, but using that attention at least gives us some purpose.

When I share a story of Teale in a meltdown & a typical parent tries to compare it to their toddler or child, it enrages me inside. I may not react or share that such a comparison has no value, but for me it shows a lack of true understanding. After all I raised two typical kids, along with the countless other children through my childcare and Nanny career that has spanned over thirty years. Toddler's are not 235 pounds and 4 inches taller than me. Most of the typical kids I dealt with in meltdowns could be scooped up, Teale can not be. Mark and I have been dealing with these challenges for over 16 years, the game changes, but the fears are often the same. We don't know Teale's future, we don't know if she will be stable or if her moods will challenge us into old age. Yes, this too is true of typical kids, no one knows the future.

I'm sorry to sound so dramatic, but I'm worn. The care of a special needs child is different. I can say this with one hundred percent certainty, because I also have typical children. It shows a huge lack of understanding & compassion when a person tries to tell me "how their typical" child is the same. Sure, Teale does plenty of typical things and when she does, we acknowledge them and often, those behaviors give us pause; she rolls her eyes at us, she loves her Daddy far more than she loves me, she can be fiercely independent and extremely stubborn, she's "girly" like a teen, she loves shopping, sitting around watching YouTube and hating her little sister, Gwenn. Just to name a few "typical developments" of Teale.

One of the biggest differences between Teale and a typical child of 16 years old is that Teale has NO FILTER when raging! Most typical kids, even as young as 2, know that hurting their parent is wrong. When they are mad, they may do some horribly violent things, like hit, kick, bite & throw things, but they do not do it with the same force as our daughter. I am literally scared I may be hurt by her when she is raging. I often fear for my eyes being damaged & my bones being broken. Yes, a rage in public with any child is embarrassing, I have lived that also, but a rage in public or in private with Teale is a whole different level of scary. When your toddler rages do you consider whether you need police back up or if CPS will be called on you? We've been in situations where the police were called on us because people thought we were hurting Teale, when all we were trying to do was keep her and others safe.

So not to belabor the point, Teale's life is different, as are all families who live with a special needs person. As Mark said last week in a doctor appointment, we know that there are many people who have it way worse than us, but we also know how difficult the life we live is....

So in conclusion, please don't tiptoe around me, I want you in my life. But also, try to consider how much you don't know, we go through, day in and day out, as your children grow and mature and move on in their lives.... We are often struggling with some grief because the child we dreamt of, is gone...

Saturday, June 20, 2015

The Toast at our 25th Anniversary, Renewal of Vows.



My girlfriend wrote this toast for our 25th Anniversary party. I've bugged her for months to get a hard copy and just last week she finally gave it to me in a belated Birthday card... I want it here, so I can share it and keep it forever. Thank you BB, I love you much!!!! 

Happy Father's Day

To My Husband, Mark, the Father who makes me proud to be his partner!



HAPPY FATHER'S DAY My Love!


May You Always Know, We Noticed...


We noticed your love, unending and true.

We noticed your sacrifices, so we can have & do the things we need or just want.

We noticed your strength, fair and supportive, holding us up, always.

We noticed your devotion, to your God, those & what you care about and of course, your music.

We noticed your morals, that they are unwavering and always faithful to what you believe.

We noticed your giving spirit, to anyone, you are present with them and you are kind.

We noticed how fairly you treat others, teaching compassion in everyday living.

We noticed your work ethic, working hard is not just a motto, it is a part of you.

We noticed how you observe with love and loyalty so sincere, often just taking in a moment, without words.

We noticed how unashamed you are of showing real emotion, when pain strikes your heart, you share openly.

We noticed your love, unending and true.

We may not always say it, but we notice you.