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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 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.