Follow by Email

Friday, March 24, 2017

Always a Musician

When we married, we had no idea how many twists and turns our life would take. Every marriage starts out with hope and promise. I'm sure I didn't know how complicated combining our separate lives into one would be. I was filled with the euphoria of a new love. Mark, a kind, gentle man, seemed to fit my life well. He was still attending a community college in our area plus, filling his time, in a band. Although I knew this was important to him, I don't think I knew how much Mark's music would be a part of our journey together. What I've learned, a musician, is always a musician. When Mark has taken breaks from that life, I don't know, if during those times, I appreciated what a huge sacrifice it was for him? As I age, I understand better how much his soul needs music, to not only enjoy life, but mostly, to truly thrive! I believe his busiest times, playing many gigs, with a variety of musicians, are his most joyful. In the beginning I may not have truly understood, but as we age, I realize, Mark's involvement in bands doesn't take from me, it enhances our life together. In my acceptance & understanding of this, we have bonded & our marriage has strengthened.
This Sunday, 28 years ago, we told our families and our friends that we planned to marry. We had, in our eyes, been engaged since February 14th, but had chosen to keep that to ourselves. So on Easter Sunday, 1989, we announced our engagement and our Wedding date. It's hard to believe it's been 28 years, and then again, it feels like forever. The lessons learned in my marriage have been many. I'm always working to be a better spouse and partner. Recently, someone pointed out to me that Mark and I are good at not making a big deal, out of every little thing. I know Mark is quick to forgive, I'm still working on that. We have grown in many ways, picking up each other's, hopefully, better qualities. There were times I just didn't understand Mark's need for practicing, every single day! I even felt slighted by it, like he chose his music over me. Now, it's just part of our daily life.
I'm proud of how far I have come in understanding Mark, as a person and a musician. There were and will be, times of not understanding, but as we've grown, those happen less and less. He's a musician, possibly, before anything else, sharing his gift and showing love in his own special way. 

Saturday, March 4, 2017

Proactive Overthinker

Tough conversation;  Would you sterilize your daughter if her getting pregnant would jeprodize her life?
These are things I overthink.
I know I would have to make a choice to abort, if God forbid, Teale were to become pregnant.
Mark and I have debated this much, but today I asked the question at my support group. I often attend a group on Saturday mornings, all the adults are caregivers of someone with special needs. These peeps normalize my life, they "get it." They have lived through or thought much about the strange things we, as caregivers, have experienced.
They don't run or judge, when someone asks a very difficult question, they sit back, breathe and talk it out.
Today, we talked it out. We talked about my daughter, we talked about their sons. We expressed the fear of our children bringing another child into the world. We also talked about how, in my situation, Teale could die from a pregnancy or the baby could be born with multiple disabilities because of the many medications Teale is on.

In many ways, being proactive is the right choice. Why put any of us through a painful choice like abortion. But, then there are the great strides being made medically, every day. What if Teale could be "fixed" someday? What if her brain damage could be reversed and she then couldn't have children because I had made a decision to sterilize her?

It's heartbreaking but a real reality that Teale could, at some point, be sexually active. My gut says she won't choose to be, after all, she is barely receptive of physical contact. I'm not a bury my head in the sand type of person though, so I accept things change. The other sad reality is that she is vulnerable and she could be violated. With my being a proactive person, I'd rather deal with this now, before any tougher decision must be made. I am a pro choice person, who personally would not have an abortion.

When I had this conversation with Teale's previous OBGYN, it seemed like it was a possible and probable choice to sterilize Teale, but then she retired suddenly.

Now I will have to find a new doctor, who understands my heart. A doctor that doesn't see me as a monster, but as a Mom, trying to do the best she can for her daughter. I deeply love Teale, her mental and physical wellbeing are my only concerns.

So, I ask, would you sterilize your child? Would you judge me for wanting to? 

Friday, February 24, 2017

Learning to Let Go

We are slowly working on transitions for Teale to be in the care of Beau, eventually. The process & thoughts that flood my mind are so overwhelming. I am realizing all the things I automatically know & do for Teale's care that I never voice, even to Mark. We are a good team & support our family in certain roles/duties that the other may never do or even know about. It has worked well in our life, but the thought of handing over the reigns to anyone, is a struggle.
I know I'm a bit of a control freak. I need/want Teale cared for to my standards. Starting a notebook of every detail of care may help me to let go, as I work through this process, but will I ever be at peace with "the letting go?" There are many before me, who have had to give up care of their special needs children. I try to learn from their experiences. I try to be realistic, Teale could easily outlive me by thirty years. Someday, I will be too old or gone & that day is slowly creeping up on us. So before it is too late & I need the transition immediately, I will prepare as best I can. Loving a child with many needs teaches us much, but letting go probably comes the hardest. 

Saturday, February 4, 2017

Gwenn's Birth Day

I forgot to publish this on the day, but want to save this memory.

Fourteen years ago on 1/13/03; Beau was 7 years old & in the 3rd grade. He was very excited about being a big brother again & hoped for a boy! Teale had just turned 4 years old, her behaviors were getting more intense & more difficult to control. Sadly, we had just switched her from her very sweet classroom at Augustine Children's Center, to Mary Cariola Children's Center. The all day program at MCCC was recommended to help us & Teale, as our discovery of her mental illnesses was starting to unfold. It had been a difficult switch, because she had been at Augustine 2 years & we were very comfortable there, but the drs and the staff at both schools assured us, this was for the best.
Our new baby was to be born on a Monday morning, by planned cesarian section, since our first 2 births had been quite traumatic, my dr thought this was for the best. We had chosen, once again, to not find out the sex of our baby. For me, it gave me something to look forward to, God's surprise. I had no real opinion on what I wanted, a boy for Beau seemed nice, but a sister for Teale and a typical daughter for me, seemed sweet too. As cliche as it sounds, Mark & I were just hoping for a healthy & uneventful birth, still we had the trauma team scheduled to be in the delivery room, just in case.
I desperately wanted to be handed my baby immediately, as this was my last chance at experiencing the birth of my own child & both of our other two had been rushed off to the NICU.
The day before, a Sunday, had been filled with much anxiety & overwhelming fear. I recall being teary & trying to hold in all the emotions I felt. I was so scared of delivering a baby not breathing, for the 3rd time.
I wish I could have known it would all be ok & enjoyed my final pregnancy & birth more.
Gwenn Gabriela came into the world silently, but breathing on her own. To this day, her silence @ birth, is indicative of the person she is. Gwenn is Gwenn & always has had a very "quiet & chill personality." Her excitement over anything is practically nonexistent, so her birth makes much sense. But, as I waited for her screams in the delivery room, I remember being terrified "I had done it again."
Mark videotaped much of the moments immediately following Gwenn's birth. Her incredible patience as the nurses poked & prodded her, is actually very funny. Beau was probably a little disappointed he didn't get his brother, but he never let on & was very sweet with her. Teale told every person she saw ~ "The good, good baby came out!" And we would have to explain...
Those were sweet times with my young family.
And even in the toughest times of their young childhood, I have loved being a wife and a Mother.
Happy Birthday to my youngest, Gwenn Gabriela! I 💗 you!

Thursday, January 26, 2017

Abortion is...

As I drove past the Mother Teresa billboard on 390 East this morning, so much went through my head.
"Abortion is the greatest destroyer of peace."
As I passed the sign, with my 18 year old daughter, who I had just been granted guardianship of, I thought of her journey. I thought of the moment I was told she had gastroschisis. I thought of the offer, actually, the push, in that consult room, for us to have a late term abortion.
My head has been spinning in so many different directions after reading that quote. Mother Teresa is a woman I admire, a woman I think of, as an angel on earth. She helped so many with her kind acts and with her deep, spiritual thought.
But that quote seems destructive, divisive and even cruel. I personally struggle with abortion. I do believe a soul is made at conception. I believe in a God and in his will of a child to come to us.
There is something in her quote that speaks to me though, after all, if Teale had never been born, I may have never known peace. Her life has much meaning, it has changed hearts and expanded mine. Mark, just the other day, bragged to our court appointed lawyer for Teale's guardianship ~ "Teale's life has made us closer as a family and strengthened our love."
 Life without Teale is unfathomable, my purpose here on Earth was changed the moment she came into my heart. So in some ways the quote speaks to me, peace surely would have been destroyed, had I aborted Teale. My own soul may have forever struggled?
But then there's the other side, the unthinkable "what if." What if Teale were ever violated or were to become pregnant? She could not safely grow a child in her body. The medications Teale needs to stay mentally and physically well, would surely harm an unborn child. To take Teale off those same medications for the health of a baby, could easily kill Teale. She has severe mood disregulation, bi polar disease and Epilepsy that are all well controlled on medications. Taking away any of her needed medications could spiral her issues and be quite disastrous.
So in this case, I see the need for a choice, I see that even though we take precautions to protect Teale, a pregnancy could occur and I would need to chose her life over an unborn baby...
Mother Teresa has been quoted many times, her deep spirit is an inspiration to many, but this quote troubles me.
It is an age old argument whether abortion should be legal or not. The reasons on both sides are great, but in the end, it is a personal choice.
For me, I continue to remain conflicted. If I had been easily swayed in that room 18 and a half years ago, where would I be today? Surely I would not be as loved or know love as deeply... 

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.