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Wednesday, October 25, 2017

Me...

At times I have felt lost in this life, I am a wife, a mother, a friend, a sister, an Aunt, but who am I? If I try to define myself I get lost in what I do, not who I am. Do we lose ourselves when we connect with another person to share their life? Do we stop being who we were when we have children and their lives become ours? I’m suddenly realizing I have evolved a thousand times in my lifetime, but what have I become? Is this midlife crisis talking? Am I reaching for my youth, when all things seemed possible and my world was all I wanted it to become? Or have I actually already arrived at where I was meant to be, with who I was meant to be with? I am me, but I am also all I have known and lived, wrapped up into one. May I continue to see the joy in the mundane and the love in the everyday. May I realize I am me and I like me. 

Friday, October 6, 2017

Heartbreak

Yesterday the father of a special needs adult took her life & his own. For me, this sadly hit home. You can judge & point fingers, but I will not, both Mark & I admitted to each other, with much heartbreak, we got it. We’ve been almost that desperate. Sleep deprivation, constant abuse from someone you love & care for, no breaks from the stress & sadness to recover, we’ve experienced the worst. Let’s talk about the real issues around this tragedy. There is not enough help, the pay to be a caregiver is so low, it is difficult to find good people. Friends & family are scared of your situation & may want to help, but don’t know how to. There are few relief programs that give families a break. There are no crisis places to take a person with special needs, so you can just take a day or two to recover. We sadly understood the desperation of this father. We are Blessed to have each other to help balance the stress & be honest about how WE are doing. Not every couple makes it through raising a special needs child, as well as we have, it can be quite divisive. It is way more stressful than words can say, yet, in our case, Teale is our greatest accomplishment. Teale has come through to the other side & we are basking in her stability, but don’t get me wrong, I understand that desperation & I will not judge.

Yesterday I wrote this on Facebook. It happened in a town very near my hometown. Actually, where Mark & I owned our first home. Today I learned the father may have been involved in child pornography & was being investigated by the FBI.
Does this change my feelings toward the situation? Yes, drastically.

What it doesn't change, is the sad reality of what families like mine live. In comments on my post, I shared how I seriously thought about murder, suicide of Teale & I, in extreme crisis times. I fantised about driving into the way of a Mack truck with her in the car. I can remember being so sleep deprived that it actually "made sense & seemed like a reasonable solution." There are two specific times I can remember telling my husband how close to the edge I was. The other time, I said "I know I won't do it, but I'm as close to suicide as I possibly could be." That day we had Teale committed to the in patient children's psychiatric unit at the hospital. We had been sleep deprived over a month, as Teale was in a severe manic state. Luckily, at that time there was room for her in the unit, but other times since, we've been turned away. I can't and won't speak for Mark, but I will share, I remember times he & I couldn't see the light. There was no hope left in us and only fear that this was Teale & our life. There were times that Teale was so abusive, I was being asked by doctors if Mark was hurting me. I was constantly bruised & in fear of the next rage. PTSD is thrown around a bit too quickly these days, but I will share, Teale's psychiatrist diagnosed us all with PTSD when Gwenn, our youngest,  was only 3 years old. There was no relief, we were alone in the Hell of trying to survive Teale's mental health illness. Some understood how bad it was, but very few really knew our pain. There is not enough help for the mentally ill, there is not enough help for a family like mine when in a crisis. There's no relief agencies that can give a family a few days off to regain strength and courage to continue care.
Teale is very stable these days, but I remember those wretched days well, the days that death seemed like a viable option. God Bless the caregivers. 

Saturday, September 30, 2017

Love Hard

Life is precarious, every day we try to remember this. We try to live life fully. We try to treat our loved ones with care & respect. We try to remember that at any moment, life could change.... but, we get caught up in the everyday issues. We get caught up in our own pain & difficulties. We forget to love completely, to forgive easily & to just be kind. Yesterday I had a jarring moment of reality. As I jumped out of the shower to answer my phone, I knew it was odd it was ringing at that time. I answered because I felt a push that I needed to & I was not wrong. It was the teary voice of my son's girlfriend. She had just been involved in in accident & needed me to pick her up. As I quickly got dressed & rushed to get her, thoughts were swirling in my head. I remembered when I totaled my Mom's car as a brand new driver. I remembered how scared I was. I remembered how tough it was to drive again after that accident. I not only felt like others didn't trust me, but I didn't trust me.
Yesterday, as I turned the corner toward the accident I realized there were several cars involved. There was a fire truck, an ambulance, police cars, my heart sank. The fear of it all, the realization that she could have been killed, rocked me. Life would have, could have been horrifically changed. She is ok, shook & shocked, but alive and well. All the drivers are fine, but it could have gone differently.
So, treat others with respect, be kind & love hard. Life is precious & we just never know when it will end.

Sunday, May 28, 2017

Memorial Day Poppies

In 1992 when my Dad died, he was living alone in his house near Cobbs Hill Park. At one time his wife & he had beautiful gardens. His wife developed brain cancer at a very young age & when the cancer came back a second time, it left her in a coma. She moved into a facility where she died a few years after my Dad. Cleaning out his home was a challenge as his mental state had deteriorated badly & he had stopped caring for the house & the gardens. He & I had been estranged for years before his death because of his mental illness. I had not invited him to my wedding & he never met my Mark. One of the few things I wanted from his home was plants. The poppies in my garden were my Dad's. Every year they remind me of him & the happier days before his mental illness took him from me. Often I have wondered if his serving in Korea played a part in his decline. This is my Memorial Day story...May the poppies bloom.

Saturday, April 15, 2017

The Power of the Mind

I wrote this a few years ago on Facebook  & thought I'd share it here in my blog.

The other night I had a lot of trouble falling asleep. Visions of Teale's first Grand Mal seizure suddenly flooded my thoughts. I had this overwhelming sickening realization that if I had not gone into her room that night, the next morning she would have been gone. That first Grand Mal was over an hour & a half long with ambulance transfer to Strong & a critical care team jumped onto the ambulance with us mid route. Our minister met us at the hospital, just in case Teale didn't pull through.
I'm not sure why I had such a horrid vision the other night, but I woke wondering if the Anniversary of that first seizure was upon me. Ironically our next door neighbors had moved in the day of Teale's first seizure, so yesterday I texted them asking out of curiosity what day they had moved in, the response;  April 15th, 2003. The power of the subconscious mind is astounding. Even though I had chosen to not remember the date, my subconscious mind knew it was upon me. We could have lost Teale that night, she had aspirated vomit, was grey & foaming at the mouth when I found her. If I had rolled over with baby Gwenn curled up to me & fallen fast asleep, what would I have found come morning? Luckily I listened to the nudges from God & got up to check on Teale. A forever reminder to me that if I listen, I can hear God.

PS 4/15/06 was the date of my Mother's stroke that she passed from a week later. Strange today's date is filled with so much heartache. A connection I had never made until this year.

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?