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Thursday, December 29, 2016

Listening to those Nudges

In 2015 Mark was gifted over $7000 in a fundraiser. His brother started it for him, knowing Mark's Dream was to own a Selmer Mark VI. Here is some of the story on how he found this rare sax.

 If you know me well, you know I believe deeply in listening to those "little" nudges you get to do something, not do something, etc.
One day last week I should have been working on Christmas stuff, as I was quite far behind, but I felt a strong urge to look on Craigslist for a Mark VI sax.
I dropped what I was doing & started searching Craigslist, not only in Rochester, but also in surrounding cities, Buffalo, Binghamton, Utica, Syracuse, Toronto, Albany.... & there it was, a mint condition Mark VI in the Albany area. It had a "good" serial number, it looked great & had had the same owner many years. I sent the link to Mark at work, his immediate response, "looks promising."
I then decided to call the owner myself, to make sure it hadn't been sold & to see if it was worth pushing Mark into moving on. If you know Mark, you know he rarely moves quickly on anything!
The man had owned it since the 70's & because he was getting up there in age, he was switching to playing the alto more. He had a deep love for the horn & some obvious regret about possibly selling it. Calls of inquiry had so far only come from far off places, like CA & SC. He was psyched Mark might actually come see the horn.
As you know now, this was the sax! Mark called to feel it out & set up a day to make the trek. Everything would fall into place easily, his brother could join him, a sax tech in the area could evaluate it with Mark & the owner on a Sunday. The money was perfect & the sax would have the tone Mark was looking for.
I don't think it's a coincidence I listened to that nudge... Thank goodness I did! Congrats Red, such an unbelievable journey this has been!

Wednesday, December 21, 2016

The Rest of the Story

This is a Facebook post from December 21, 2013;

One of the longest days ever... Teale had one of the worst rages ever in the garage when Mark & I should have been on our way to his Mom's service. It was so horrid, he & I were actually screaming at each other b/c he wanted me to just go to the service & I wanted him to. So not us, but we've already laughed about it all. In the end we got there & Teale was great, no one would have believed what we had just survived...

But here is the rest of the story...My memory of "why" it started is gone, but I can still picture the scene. Mark's Mom had died from complications of Parkinson's & Parkinsons dementia a week before. I know we were in the garage when it started, our safety in danger. Teale was in full fledged rage, going after Mark and myself. When she rages, she has no filter, getting her to her safe place is our only saving grace. Generally, as she matured, if you could get her to the couch, she would stay there. Our house is a raised ranch, seven steps to her safe place and at about 200 pounds, we weren't going to be able to carry her. Our garage was a mess, dangerous stuff within reach everywhere. Teale grabs whatever she can to chuck at you, when in a rage. Many things have been broken over the years. We both have been the target of her near perfect aim. At one point, being bruised was my norm, she hurt me often & it just was, what it was. That day, we tried to reason with her, we even tried to wrangle her, but her adrenaline was out of control. She's stronger & extremely feisty in a rage. At one point, we called in Beau, our 18 year old. Usually I would not ask Beau for help, I've always had a thing for not involving my typical kids in rages with Teale. But this day was different, the clock was ticking and we were late for Mark's Mom's funeral. As our anxiety and frustration escalated, Teale probably got worse. I'm sure she could feel our emotions as we were not our usual very calm selves. All I kept praying was not now, please let my husband have peace. The whole situation was bizarre, we were overwhelmed, sad, angry and confused. Why, why now? As we decided to try and get her to the couch, the three of us surrounded Teale, who was on the filthy garage floor in her good clothes. Trying to figure out how to hold her, without any of us getting hurt, was discussed. She'd pull hair, gouge eyes, bite, the person near her arms and head. The person near her feet could get kicked in the face, we needed a strategy to carry her inside and upstairs, but then we just tried. We went in and she managed to out trick us, slipping and stripping out of her coat and her dress. Poor Beau didn't need to see his sister naked, the plan a failure, we gave in & let her down, somehow redressing her in the freezing cold garage. Her screams were probably heard by many neighbors, it was all so unbelievable. I kept imaging the people wondering where the hell we were. Why would anyone be late to their own Mom's memorial service? Teale was still full of adrenaline, going after us, threatening to throw stuff, screaming, biting herself, etc. I was scared for myself but more scared Mark would miss his Mom's service, so I started pushing him to just go, I'd be fine. Her behavior so irrational and dangerous, he refused. We got louder, tempers rising, not at each other but at the situation. I was screaming at him to take the other kids and go. Mark was screaming at me to do the same. We were out of hand, yelling over Teale, anger over not being able to just grieve normally, having to deal with this situation on an already horrid day. Mark wanted to protect me and I wanted to protect him. As I told him again to go, I'd deal, he again told me to go. It was ridiculous to me that he thought I could go to HIS Mom's funeral without him. Mark doesn't swear, so in turn, out of respect for Mark, I rarely do either, but at this point, I've lost my mind! I'm screaming at him, "Sure Mark, that would be fucking great, I show up at YOUR Mom's funeral and no one will hate me for leaving you with Teale! I'll look like an asshole! That's a fucking great idea!" My sarcasm flowing. "Mark, Just go!" I plead, "You can't miss your Mom's service, you'll regret it forever!" "I'm a grownass man, I'll do what I want!" He screams at me....
At this point I realize we are not moving forward and need a different plan. So we calm, regroup and start actually talking again. Mark admitting to Beau and I that I am right, I can't go alone, everyone will hate me. So I finally tell Beau, get Gwenn, take the van and go. Tell the family what's going on, try to stall. Send us help, if you can think of someone who can help us. Beau pulled out of the driveway and that was the trigger. Teale realized he and Gwenn were going to see family and she was missing it. She started to calm, people were texting me, asking where we were? Friends were worried and rallying. Teale was finally showing signs of decency again, I was hopeful. Then suddenly we were cleaning her up and in the car on our way. Many frantic texts being responded to on the ride. We got to the church and the first face I saw was my sister in law, Val, I fell into her arms, a puddle. Sobbing, but not for the reason everyone who saw me thought. I had just been through a war. I was completely worn, a bundle of emotions. So strange, the reality of what we had just gone through and then to see Teale now, happy and content with her cousins. No one could understand the hell of only moments before. Teale stayed with her cousins as Mark and I walked into the sanctuary, hand in hand. We were going to be able to pay our respects to his Mom. The entire service went off without a hitch, Teale was perfect, hanging with her brother, sister and cousins, just a few rows behind us.
Did she need to rage.? Was that how she was mourning? Was she feeding off of our emotions? Did that have to happen, to bring us back to the here and now? Was it a reminder to us that Mark's Mom would want us to take care of ourselves and our family? And to not worry or mourn her passing?

We walked out of the service at the end and greeted friends and family. Few of them knowing the scene in our garage, even fewer of them knowing Mark and I had had a rare moment of insanity toward each other. My girlfriends, who had been texting me during all of it, kinda knew. As they approached me in the line they handed me a Starbucks coffee, but it wasn't just coffee...

The moral of this story;  Mark is a grownass man, girlfriends rock, we are a resilient family, we are surrounded by love and laughter really is the best medicine. 

Sunday, December 18, 2016

A Memory of MIL

One of the most notable things about my MIL was how none of us "in laws" were good enough for her "kids." In most of my marriage I was not ever really sure if Mom liked me. Mark says I'm crazy, but truthfully I never knew, she was not a person who wore her feelings on her sleeve. In my family it was truly the opposite, my Mom used to joke that "God forbid" something ever happen to Mark & my marriage, she was keeping Mark. :)
MIL & I were very different personalities. I'm open with my feelings & share much about myself. Many people would probably say I share too much. I push others to get to know the depth of their souls, not just the surface stuff.
Mom's life was changed drastically when she lost Bill at such a young age. I spent much time with Mom alone, both in the beginning of our marriage when we lived with her during her recovery from breast cancer & the end of her life, when she lived with us b/c of the progression in her Parkinson's & Parkinson's dementia. In both those times of her life, we talked about her early days alone after Bill died. I pushed her to hear her stories, to get to know her in a deeper way than she usually allowed. She would tell me that in the beginning right after Bill died she "just couldn't think about him, because it hurt too much." She told me her kids got her through b/c she had to be there for them. And that little Markie kept her going. He was just 2 years old at the time & would ask for his Daddy often, not understanding he was gone forever. An image that still breaks my heart. As each of Mark & my children turned 2 years old, I remember thinking about how it would feel for them to suddenly have their hero disappear.
Mom & I spent many hours alone together in her final years. Many stories couldn't be told by the end, as Parkinson's stole much of her memory & her voice. She taught me everyone deals with loss differently, some shut down their feelings & march forward. It probably isn't how I would deal, but that doesn't make either of us wrong.
I am grateful for the time with her & the memories we shared. I know I pushed her in a way she might have been uncomfortable with, but in the end I think she knew I loved her & just wanted to know more about her. I think although I would never be good enough, I think she knew she was leaving Mark in good hands & I would love him through all of lives challenges. Thank you Mom for sharing, when you probably just wanted to forget. Life stories teach us more than any academic curriculum does & you were a great teacher. Mom, enjoy your reunion with Bill. I hope you know I loved you and most importantly, I promise to take good care of your baby boy. Till we meet again...

Monday, December 12, 2016

The Son I haven't Met

It would be difficult to write what Mark & I experienced at Lily Dale last week, but the strengthening in my beliefs are profound.
We were told a few times that we were meant to be together & the events we have lived had to happen, to increase our bond, so we could deal with the challenges.
I have always believed in a God & a spiritual connection to our loved ones who have passed, but after ruminating over the information that was shared with us last week, I have felt the presence of those we've lost even more.
The book, Heaven is for Real, although simple, had moved me when I read it a few years ago. I especially connected with the part where the boy met his unborn sister, who his Mother had miscarried & never told him about, when he visited Heaven.
I have often felt the presence of a child I miscarried, between the births of Beau & Teale. Although society may not believe that child to be "real," because it was early in my pregnancy, to me, he was & I've always missed him.
At that time, that loss was very difficult, I, like most, felt a strong, instant connection & had hopes & dreams, as soon as I found out I was expecting. Mark too suffered the loss, but he was strong & supported my grief with much love & respect.
That baby was due on Mark's Birthday, so every year, while celebrating my sweet husband, I have also thought about the baby I never met.
The medium saw him, our baby, who I've always known was with me. He spoke to her & told us "he had to be," to make way for Teale. He strengthened both Mark & I, physically & emotionally, to deal with what was to come.
The bond we developed over that loss made our marriage more "meaningful." Mark was fabulous at supporting my grief & has never once made me feel like I am over exaggerating that loss. It was & is real for me, I still shed tears wondering who that child would have been & how different our life would have been with that child here & Teale never born. Teale was conceived after the miscarriage, but before the due date of the baby we lost, making her birth impossible, if we had carried that baby full term. The birth of Teale was welcomed, because we had "lost" & knew the gift of a baby to be a true miracle.
The medium said ~ "We were truly touched by an Angel." She knew details only Mark & I understood & she gave me, through Mark, some justification for the feelings I have had all these years.
Ironically the message was really given to Mark, not to me, but maybe that was our son's way of letting Mark know that he is with us, because, the truth is, I already knew.

Friday, December 9, 2016

Holland

Eighteen years ago today we arrived in Holland. Our trip had been planed for Italy, but that's not where the plane landed. Over the 18 years, I have learned to mostly love Holland. The journey has been full of ups and downs but as I've walked it, with Mark by my side, I've grown in many ways. I've learned to see good in the bad. I've learned that all people need love and acceptance. Life is more meaningful and my marriage is stronger. My family knows more pain and more joy than most will see in a lifetime. Miracles have happened before our eyes. I'm especially grateful for all the many people we've met in Holland. To imagine life without them would be impossible and ever so empty. Holland was not the trip I wanted to take, but in the end, it was the trip I needed. Eighteen years ago, I arrived in Holland and although I have dreamt of Italy, Holland is where I have blossomed. 

WELCOME TO HOLLAND


by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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 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


Saturday, October 1, 2016

Sharing....

A week ago I was asked to share some of our story, as a family, raising a daughter with Special Needs. It was very difficult to condense all I would want to share with this class of students at a local private college. The class was small and therefore a very intimate setting. I sat in front and just told highlights of life with our daughter, Teale, the good, the bad and the very ugly. There was much I missed and or skipped over, because, as it was, I went far over the time allotted. The "kids" got an earful that night and my hope is that they learned much about how families like mine really live. Our challenges are many and often, they are constant. 
I am sharing their reflections to help me to remember:

                We can't be ashamed to tell our stories,     they could be the key to someone else's success.









I've waited a few days to post on the blog because after class I was left speechless. I was blown away at Ellie's compassion, and her resilience to make sure Teale has everything she needs and is happy. When she spoke of her family and everything they have been through, it gives me so much hope. The strength this woman has, and her will to never give up is absolutely inspiring. I checked out her blog "We Are God's Entertainment" where I read some more stories about their family and I'm still struggling to explain how amazing and how genuine this family must be. 
   I have not personally seen a severe seizure take place, however my older brother has had his share of rages and outbursts, and I have felt the gaze of people looking at our family when we are in public, but as Ellie said quite well, it is almost always overshadowed with kindness and support. After hearing some statistics of parents with special needs, I'm so glad that there are families that do not follow them, never knowing this statistic I am also grateful that my own family is still together and happy, and now learning of more and more families that are the same, I'm not quite sure how to put it but it truly is incredible the bonds people can form and maintain despite the challenges having a special needs child may bring.
  I have so much respect for Ellie and her family, and hearing about their trouble with some school systems really encourages me to do everything I can to help students with particular needs, because each student deserves the best efforts from their teachers, and letting them down just doesn't seem like an option. 
Again, I am so grateful for have the chance to listen to Ellie, and even after trying to type this out and put my thoughts into words, there's still a part of me that feels like I can't quite capture it. 




Listening to Ellie Bradley share her experiences with us was certainly powerful and moving. Through the presentation I went through a whirlwind of emotions, and after class I really had to sit down and let my mind process everything. Something I found particularly powerful was that we were told the story starting before Teale was born and everything Ellie went through up to the present. A really emotional part for me was when Ellie was talking about having to train her kids go to a safe room if things ever got out of hand. It is no doubt that having a child who has special needs is a lot of work, but this example told by Ellie really illuminated just how crazy things were. And for her children to have to go through that as well must be extremely difficult. I checked out her blog, “We Are God’s Entertainment” and I really love reading her posts. By the time class ended I really just wanted to keep hearing about her experiences, and now I can read them! I find writing this blog really challenging, I just feel like my words are not evocative enough to do Ellie’s presentation/this topic justice, even so Ellie’s presentation was so moving and really eye opening for me about just how extreme the lives of the parents/caretakers of children with special needs can be.




Hearing what Ellie had to say was pretty earth-shattering and eye-opening. We all know that these issues go on in our world, whether it be learning disabilities, mental disabilities, and physical disabilities. But when we hear personal stories from someone who has been extremely affected by such things, it really grabs your attention. I think I cried once! It was when she was talking about her son, Beau, and how he stepped up to the plate to advocate for his sister, which ultimately changed things in their lives drastically. Her words really stuck with me, and made me feel for all the crazy things that she has had to endure in the past seventeen years. When she was talking, I made a lot of connections in my mind of her and Debra Chwast, Seth's mom. They are similar in the way they advocate and care so deeply for their child. Overall, I am very glad we got to hear from Ellie, and I wish we had more time to listen to her!





I am just loving this class! the speaker last night was amazing, I immediately wanted to be apart of their life (in a professional way). I have such a big passion for special education and the arts. I think that is why I felt so passionate about her story as well. What really stuck with me was how strong of a woman Ellie was and is. My day at BOCES (6hrs) is a very long and stressful day, so I can understand at least some of her exhaustion. She spoke about her daughter and her life with such power- I loved it. She did admit how hard time could be, but never gave up. Her and her family stuck together and did everything they could to help each other out- you really don't hear that too often. I was also blown away by the school district giving them such a hard time about their daughter leaving. Schools, teachers, and principles are in that profession for a reason.. to help students. It took her 16 year old brother to break down in front of adults for them to listen, I cannot believe that. I hope I am never apart of such a situation, as a teacher I would have fought with them and their daughter. Ellie and her family are truly special, I appreciate her coming in and tell us her story- I don't think she knows how touching and inspirational it was. I honestly think that she should write a book about her experience or even go around being a speaker, she could help many people and families! 





I found our speaker tonight to be incredibly moving and inspiring.  My mom has always worked with students with disabilities, from minor, to extremely severe.  So I have been around kids with intense needs before, but that hasn't necessarily made me comfortable with how to act in scary situations when medical needs arise.  I was helping out at a Christmas party once, at my mom's school, and a girl started having a seizure, and I was quite young, but I remember feeling very scared and helpless because I didn't know what to do, even though trained people were there to help.  I have often wondered since then what I would do if I was the parent of a child with these kinds of needs.  The panic I felt would never equal that if I was the mother, or sister, of someone going through that kind of trauma.  However, after hearing Ellie speak, I feel incredibly moved and inspired.  She exhibited such strength that I was in awe of her ability to care for herself and her family.  I was stunned that doctors pushed her to have an abortion, possibly because of my personal beliefs, and have so much respect for her holding her ground from that point, on to every time she had to advocate for herself, and her family.  She truly had to fight to provide the best possible resources for her daughter, which was heartbreaking but inspirational at once.
I also found hearing about her family life to be incredibly comforting.  It gave me a glimpse into what it's really like to have an intimate relationship with a person who has special needs.  I was so grateful to have heard her share what goes on behind closed doors, so candidly.  The team her and her husband make gave me so much hope, after hearing the statistics on how these situations can affect relationships.  It was such a testament to their love and resilience.  I also loved to hear what it was like for Teal's siblings.  The two perspectives were so raw and genuine, that I felt truly moved by each of them.  I am trying to imagine myself in their shoes, and have a deep respect for what they each must feel.  





Overall, I am so grateful to have heard her story both as a future educator, and as a human being.  I feel better equipped to deal with my own insecurities about interacting with people different than myself, and with my ability to provide for such students in my classroom.  I never want to be the teacher to let a student and her family down, as Ellie experienced.  I feel more determined and capable as a result of her talking with us, and am honored to have heard her.


Monday, September 26, 2016

I Forget...

Writing escapes me from time, to time. I forget how much it centers me. I forget how much it helps me feel at peace. I forget how much I get from putting words to problems down, instead of just letting them fester in my head. I forget how much I will appreciate remembering a small moment in our life, long after it's gone. I forget how sharing, may help others to learn. I forget that taking time for me helps my family. I forget that I enjoy writing.
So here I am, with not much & way too much swimming in my head.
Last week I shared "our story" with a class at Nazareth College. The class was made up of college kids pursuing Special Education. My friend, who teaches the class, had asked me to share some of our journey, as a family, raising a daughter with multiple special needs.
Trying to condense the journey would be tough. I would talk too long & leave, knowing I hadn't shared all I hoped to.
My note card quietly folded away in my purse. I had decided to just go with my heart. I've always believed sharing would help someone, somehow, someday... When we are open, we possibly help others to find the easier path. We help teach understanding & compassion. When we share our stories we bring people together & we don't feel so alone.
So to the "kids" at Naz, I want to thank you for listening. I hope someday when you are teaching a child like my daughter, you remember that behind that child, there is a family. There is a history of pain & joy that got them to where they are. There are people who probably didn't choose this path, but walk proudly anyway. Please walk with us, not against us. We need you to believe in our children and we need you to believe in us. 

Monday, March 7, 2016

Wegmans, Not Just a Grocery Store


Published in our local newspaper, The Democrat & Chronicle, in celebration of Wegman's 100th Anniversary




Several years ago I wrote a letter to the editor about an impatient shopper at Wegmans. The person had not been impatient with me, but with my multiply disabled daughter. My daughter, Teale, has many hidden and not so hidden issues from a severe birth injury. Wegmans is one of her most favorite places to go and can often help her turn her mood around. Back when I wrote the letter to the editor, Teale was about 5 years old and her disabilities were less obvious. Teale is now 17 years old, but she still loves Wegmans. Almost every Saturday morning you can see her and her best friend, my husband, her Dad, Mark, at Pittsford Wegmans. They are a sight to see. Mark is one of the sweetest, most patient Dad's there is. He works a full time job durning the day and many nights he can be seen playing his sax or singing in local bands. But even if he was out the night before playing music into the wee hours, Teale still gets him for her Saturday morning trip to Wegmans. She will wake up extra early on Saturday, excited to get her day going with her Dad. I've often joked that the regulars at Wegmans on a Saturday morning must think he is a weekend Dad. Maybe they think he is divorced and out with his daughter for his weekly visit but in reality, Mark is an everyday Dad. He is very present in our lives, maybe especially when it comes to Teale. Wegmans has been a huge part of their bonding, it is their thing, a special time our daughter counts on every week. Sometimes you will see her with an American Girl doll in hand, kinda a strange sight, as she is about 5'6" tall. Often, Mark tells me, they see many of the same people, who, with knowing smiles, nod Mark & Teale's way. Wegmans has many routine based people, who, like Mark & Teale, come every week about the same time. Most weeks they start the shopping trip with a bagel together upstairs before doing the grocery shopping. They even go to the same cashier, Corie, who Teale is very fond of. The weeks Corie isn't working, Teale is disappointed and comes home telling me, "No Corie today." Whether she knows it or not, Corie is part of our "circle." She a person who understands our Teale and treats her with care and respect. Then there are the pharmacists and staff at the pharmacy. There is truly not enough good I can say about them. They are kind, compassionate and extremely caring. They may not know Teale's whole story, but they know she is on a lot of medicine and that we struggle at times. Teale has had many not so pretty moments at Wegmans. She has raged in the aisles, in the produce, at the customer service desk and in the parking lot. Teale has also laughed, touched peoples hearts and brought complete strangers to say kind things to us. We have been judged and some have thought she was just a bratty kid in a rage, but as we live this life with Teale, we are far more often surrounded by love and Wegmans has given us some of the best stories, good and bad. One I hold onto many years after it happened involved Teale in a horrible rage, still small enough that Mark could scoop her up, but not without a huge scene. He had her on his shoulders just trying to get out as fast as he could. I was there also, with our youngest daughter, Gwenn in tow. It was like the buzz of Wegmans had stopped and all eyes were on us. I stepped away with Gwenn, just hoping to get out "alive." As I stood in the produce area, near the exit, Gwenn by my side, an older woman walked up to me. I held my breathe...This woman had kind eyes, full of understanding and compassion. All she said was "Hold your head high Dear, you are doing a wonderful job." To this day I wish I could find her, her kind words still bring tears to my eyes. Wegmans may just be a grocery store to some, but for our family, it has been a place where some of life's biggest lessons have been learned & maybe a few have been taught.  

Tuesday, January 12, 2016

Soul Searching

I think I'm a very secure person in my relationship with my husband. He treats me well and I've never had cause for thinking he is not loyal to me. 
So my deep feelings around his removal of his Wedding bands for gigs has kinda shocked me. (Mark wears one on each hand. His right hand is his original, plain gold band from our Wedding. On his left hand is a ring I designed for him with a diamond from a friend. I gave it to him on our five year Wedding Anniversary. On our 25th Wedding Anniversary that ring was finally Blessed at our renewal of vows ceremony.)
Last night was not the first time he has removed his bands for a gig, saying it messes up his bongo/percussion playing. It also wasn't the first time I've wondered why it bothered me so. After all, I KNOW our marriage is strong and not based on wearing of rings or not. 
So when Mark questioned me and I had no logical response, I thought, I'm going to pray on this. Before I fell asleep last night I asked for understanding, for the "why" his taking off his Wedding bands bothered me deep within my core. When I woke this morning I had an answer. The answer rocked me, but made sense. I've had strong reactions like this before, in totally different situations, but again, the reason was the same. 
I was a young girl who adored her Father, some of the good memories are very clear; ice fishing, walks in parks, picnics, Honeoye Lake at my Grandparents place, Menlo Place and my Grandparents... Lots of memories flood my mind when I think of my Dad, but sadly one thing has challenged me the most, his affair on my Mom. 
I don't know the truth of that time, heck, I was just a kid and hardly know what their relationship was, the good or the bad.
I do know I was exposed to much a child probably should never have heard or seen. One of my most vivid memories has always caused me pause.
I was on a date with my Dad, just him and I going to a park for a picnic, or so I thought. We would "run into" a friend of his, a woman much younger than my Dad. She would be very sweet and as a young girl, I would enjoy the kindness and attention she showered on me. It wouldn't be until I told my Mom about the nice lady Dad and I saw at the playground that I would kinda catch on. 
I'm not sure if this will make sense to anyone, but in watching the demise of my parents relationship, I had a lot of guilt. As a little girl I thought somehow I had caused it, by telling my Mom about Dad's friend. One day far after the picnic my Dad married that "nice lady" from the park. 
I forever would juggle enjoying her company and not hurting my Mom's feelings, by pretending to not like her. It was very complicated... 
So back to my story, I believe my Dad's taking off of his Wedding ring to my Mom was a very traumatic event in my life. I think it was a deep, unresolved time when I realized my parents were breaking up. My Father's naked hand was the start of it all, at least to a little girl who didn't understand the complications of a marriage. 
Mark will tell you, I get very needy every time someone around us breaks up. I will ask him more than my usual for reassurance that we are ok and then eventually, with time and his patience, I go back to "my normal."
I have done much soul searching and I have gotten much counseling over these feelings. My Father died without Mark even meeting him. We had been married a few years when my Dad passed, but he had been struggling many years with mental illness and alcoholism, so for my own sake, I had stepped away. His death was hard on me though. I had much guilt that I should have helped him. I had to face those demons that had caused me to walk away from my Dad. I had to feel the pain that I wasn't going to ever get that "second chance" that I had counted on and I had to move forward. I worked hard at this, but obviously, I am not completely "cured" from this huge loss in my life or from the betrayal I witnessed.
Mark taking off his Wedding rings is not a big deal, but apparently it brings up a deep and sad memory for me, making it a big deal to me.

So for that, Mark, bear with me, I'm still trying to get used to the fact that you love me unconditionally, rings or not! XOXOXO

Saturday, January 2, 2016

The Lost Christmas Letters, 2012 - 2015




It's been since 2011 that we have done a year in review letter. So I decided to try and highlight some of the goings on since then.

Mark's Mom moved in with us the Fall of 2010 and in December of 2012, she continued to live with us. We were in a good routine by that year, coexisting at Bromley Road as a family of five, plus Nana. December 2012 was rough though, with a few different emergency room visits and situations that took much of my time, causing me to let go of our annual Christmas letter. Sadly Mom's needs were ever increasing and a sharp decline was ahead of us. By late Spring of 2013 it became apparent, I could no longer keep up with her care and the needs of our own family. So by Summer of 2013, Mom would move in with Sue and Jim. (Mark's sister and brother in law) There were many pluses having Mom with us and I will never regret those years. We gained a lot of respect for each other and a deeper love. My children learned much from that time with Nana, about compassion for the elderly and sticking by those we love. She, in turn learned a lot about Mark and I, our special family and how our love has been deepened by life with Teale. Before she lived with us, her understanding of our everyday living seemed a mystery. I believe she discovered that we have much more love and joy in our life than she had thought. I know she often saw Teale as a burden before moving in with us. I believe it was part of God's plan to have Mom really get to know our kids, but especially to have her understand the deep love and connection between all of us because of Teale.
On December 13, 2013, Eleanor Frances Valle Bradley passed from pneumonia complications. The increasing dementia from Parkinson's Mom had was heartbreaking in the end. It had become almost impossible for her to talk, much less carry on a conversation. Luckily music moved her soul and that never changed. The last days with Mom were spent with family, jamming in the hospital room. All of us crammed around her bed, the sax, a guitar, a trumpet & voices. It was a very Bradley tribute and I've said to Mark, I only hope I go the same, with his sweet voice singing to me. There are many fond memories from the years with Mom in our care, but because of dementia taking much of her, Mark & I were at peace when she passed. The image of her back together with the love of her life, Bill Bradley, brings us all much comfort. We held her memorial service on December 21, 2013 and again, our annual Christmas letter took a back seat, but the service was perfect and filled with love, music and memories.

Beau graduated from Pittsford Mendon High School in June of 2013 and was accepted into St John Fisher College Nursing Program. His moving out that Fall was tough on all our hearts, but especially on Teale, who missed him very much. Luckily SJFC is only about ten minutes from our home, so we saw him fairly often. By August of 2014, Beau decided moving back onto the campus was not for him and he has lived home ever since. He is doing remarkably well in college, nursing seems to be a true calling for him. I believe his life experiences have truly made him more knowledgeable and more compassionate. After all, he not only has lived through the many challenges and medical issues of Teale, but also the time with Mark's Mom in our home. Beau continues to play sax. In the last couple of years he has played in a club at college, pit bands and sat in with some of Mark's bands. Beau still enjoys sports and staying active, so he has played recreational sports since graduation from HS. He continued to work at Tom Wahls and doing varies lawn work through the Summer of 2015. He has been dating Hope, who he met at Tom Wahls, since about January of last year. Beau is still a very caring big brother and we have appreciated his help with Teale especially over the past few years.

Teale, well there is always too much to say about her. If you follow my blog and/or my Facebook page, you are most likely fairly up to date. The years with Mom here were very meaningful for Teale. She and Nana spent a lot of time together; looking at family pictures, watching movies, walking around the neighborhood with Mark, singing, swimming or just being outside. Our meals together were very lively & after dinner we often played games together. Mom and Teale spent a great deal of time looking at American Girl Doll catalogues. They were truly like best friends at times and I appreciated the company for Teale and visa versa, for Mom. We've had many highs with Teale over the last few years, she's matured much and most of the time her mood disorder is in pretty good control. I still hate the mental illnesses that plague her, but for the most part, she is about as mentally stable as we ever hoped her to be. We did hit a real medical crisis this last year when we discovered Teale's kidneys were failing because of Lithium. Taking her off the only BiPolar medicine she has ever been on (Started it at 6 years old.) was terrifying, but she has done really well. The medicine we replaced Lithium with has been good, with the exception of increased appetite. It is tough to control Teale's diet, as she is quite insistent and independent at home. I'm sure before Teale, I thought I could manage this better and maybe I will figure it out someday, but most days we just work hard to just keep her mentally stable. She was diagnosed with Chronic Kidney Disease and high blood pressure because of the kidney issues. We are hopeful we caught things early enough and she will stay stable now. The high blood pressure medicines seem to be helping her in more ways than "just" lowering her high blood pressure. Holy Childhood continues to be a Godsend and Teale LOVES going to school. She is working at The Sisters of Saint Joseph Motherhouse along with a job coach and other peers from Holy Childhood. Teale has many activities she is involved in after school and her social opportunities have greatly increased with her going to Holy Childhood. There are many "clubs" she loves being part of @ HC; basketball, cheer leading, Teen Social, Kidz Klub and Out and About. She attends "Respite Friends" after school & "Teen Night" once a month on Friday's @ Pieters Family Life Center, a Heritage Christian recreation center.  In addition to those activities she continues to go to Sunshine Camp & Pieters Day Camp every Summer, along with Summer School. Teale's life is filled with social opportunities since starting at Holy Childhood. She is very well liked and thought of as a young lady who follows rules, can be trusted and is respected by many. Our gratitude for Holy Childhood is immeasurable!!!

Side note: The Christmas letter of 2014 was lost to a very intense December with Teale's mania taking over much of our lives. Her bipolar often has predictable peaks and valleys. Fall and Spring are very typical manic times for Teale & the holidays just exasperate her Bipolar. So last year we let the Christmas letter go again, but this year I was determined to write it!

Gwenn has moved from our last child in elementary school to Barker Road Middle School since we last wrote. She has been taller than me since 4th or 5th grade and is now taller than her big sister. Gwenn is not interested in sports, so our schedule is nothing like it was when Beau was her age. She is a homebody for the most part and her interests are very similar to mine. Gwenn loves trying new recipes, although, Mark and I would both say her "failure rate" of recipes is well over 50%. I'm not saying she fails at following recipes, I'm just saying, more often than not, she does not like the things she tries to make. Gwenn also enjoys my flower gardens, although she rarely helps to maintain them, she loves to see the beautiful flowers and photograph them. Gwenn loves the family cats and is always vying for another one! We have three and for Mark & I, this is plenty! Gwenn plays sax also, but her drive is not there. She certainly has the musical talent, but at this point, she does not want to share her talents. With a voice that is developed well past her age, it breaks both Mark and my heart she will not share her gift. My hope is that someday she will... One of Gwenn's other gifts is photography, she has a great eye and has taken some very insightful pictures. Gwenn is also really good with little kids and enjoys them as much as Mark and I do. Her second cousin, Amariah (Jessica's daughter) and Gwenn have a very special bond. The last two Summers Gwenn has volunteered at Peacemakers, a program that brings city children and suburban children together at our church, but is not religious based. Amariah went to the program, which helped both she and Gwenn do something out of their comfort zones. Gwenn hasn't found her drive/calling in school, but she has many talents that are not academic. I see her as being very much like me in many ways, with the exceptions of not being as comfortable socially and being far more musically talented than I! Middle school years are tough, but I think she is finding her way.

My life has taken many twists and turns over the last few years. As caretaker for our family, I remain incredibly busy, especially with medical needs and appointments. Taking on my MIL made life even more challenging, but it was a very fulfilling job in many ways. Knowing Mom was safe and cared for helped me let go of a lot of the stress I felt when she was living at Red Fox Run. Mark, was of course, incredibly grateful to me for taking care of his Mom. So his support, encouragement and love often kept me going. Mom and I bonded and I know much pain of past hurts disappeared. I had never felt like she had truly embraced me up until the years she lived with us. Mark and I have a great partnership, especially in stressful times we seem to pull strength from one another. We became even closer in the years with Mom. After her moving out, I started working outside the home part time. Since June of 2013 I've done a variety of different things, from senior care, being an aid to 2 UPK boys diagnosed with special needs, subbing in Brighton Schools, subbing in a UPK/childcare and even doing gardening work outside my own home. I continue to volunteer for Dream Factory, Holy Childhood and I added the city school my grandniece is in this Fall. I still struggle with taking care of me and need to figure out how to do this better, so I can continue to care for my family well. The truth is, it's a long haul with Teale, we know she needs us for many years to come, so Mark & I need to work out the right balance as we live life as parents, partners and caregivers. For the most part, I believe we do this well, but as we age, I see health issues creep into our & the lives of those around us. This makes me realize the power of stress on health. Learning to find ways to release that stress through exercise, prayer, meditation, etc, is a goal of mine. Blogging is also a release for me, so finding the time to blog more is another a goal.

Mark, what can I say??? He is the BEST! He continues to love and care for each of us with strength, courage and humor. We are all so very Blessed to have him as our husband, Father and friend. Last February we took a leap of Faith and he left The Childcare Council for a job with NYS. His managerial position at CCC was better pay, but there was not as much hope for the future as there is in the state job. So, two steps back to take three steps forward, eventually. I believe it was the right move and Mark has been seen as a very valuable part of the team in his new position. There are a few more opportunities for personal growth at the state level, so in the end, I am sure he will be even more successful. His playing the sax out has increased a great deal in the last few years. Connections to the Rochester music scene are tight and Mark continues to gain respect by many. The biggest news besides the job change, is that Mark now owns his DREAM, a Selmer Mark VI sax. Thanks to his big brother Scott, who had the vision to start a fundraiser for Mark & the hundreds of friends and family who chipped in their hard earned dollars. Scott was able to raise over $6000 for Mark to buy his dream sax. If only I could put into words what this gift has meant to us. Mark has compared it to the movie It's a Wonderful Life, I have compared it to being at your own funeral. Morbid, but much truth, we as a couple really learned how loved and respected Mark is. As his brother, Scott said, at Mark's 50th un-Birthday party this last Summer, Mark is the richest man in town! Not only was it an unbelievable amount of money to be raised, but most of it was raised in less than 48 hours! I have said to Mark, it is really not about the money, it is about the number of people that believe in him. Thank you to Scott for having the idea and for all the many contributions! Last weekend Mark drove to the Albany area and bought his dream sax! We are all basking in the love and God's presence that made that purchase possible!

In August of 2014, Mark and I celebrated our 25th Wedding Anniversary. We had a renewal of vows ceremony at Mt Rise UCC, the church we have attended since shortly after our marriage in 1989. We then held a party at our home for family and friends. The event and the day was all I had hoped for. Mark and I are a very Blessed couple and the renewal of vows just affirmed our deep love and commitment to each other, our marriage and to God.

May I never have to do a catch up letter again! Merry Christmas and may your 2016 be as Blessed as we have been by you!
With love,
Ellie, Mark, Beau, Teale & Gwenn