Advent in 2015

This is a Facebook memory I have decided to save and share here.


Mark & I "high fived" at the end of the church service, not because it was perfect, but because we had survived.
All five of us were in church to light the first candle of advent ( the candle of Hope, loving the irony yet?) & seconds before we were to go up as a family, Teale started melting down. Mark stayed with her at our seats while Beau, Gwenn & I went to the alter. Teale continued to be angry, but everyone just continued. With the singing of the anthem, she seemed to start to be more at peace. Music is healing & we were again reminded as a family that we are welcome, in good & in bad. So maybe it going perfectly would have been nice, but would the lesson had been the same? The following statement we read shortly after her outburst, puts much in perspective.

"Living each moment with gratitude and receiving each person as a precious gift, may we walk in the way of Christ. Amen."  

My husband’s perspective;

I love how unwittingly Teale has been so powerful in delivering Christ's message of acceptance and love over the years. Especially at Mt. Mountain Rise United Church of Christ. We have had a couple of "mottos" in our church over the years; "God is still speaking" and "Wherever you are on life's journey, you are welcome here." A hundred thoughts have gone through my head since this morning's service. I'm so glad that God works through her, but must admit that sometimes it takes me off guard and wears on me. And I wonder how Beau and Gwennie deal with it. I mean Teale was screaming in the sanctuary, but I couldn't get her out of there. I thought  at the end of the service I was going to have to help Beau get up out of his chair. But, in the end, we all left smiling!

She Chose Her Path

There's never a day that goes by that I don't have at least one fleeting thought, wondering what she would have been, without the brain damage occurring at birth. Many may think that such yearning is wrong. Many may think I should let it go. I'm open & honest about our life with Teale, so I'm sharing this very deep feeling about me. I may somewhat have let go of what Teale should have been, but I have also accepted that it doesn't make me a bad person to sometimes grieve what she should have been.
I wonder if she would have been musical, what her talent would have been? Would she have had a beautiful voice or played a mean sax? I wonder if she would have had many friends at PMHS, played sports, wanted to go to a college far away or nearby? I wonder what she would have become as an adult & if she would have been a wife or a mother?
I may never totally accept my daughters fate in this world, but that doesn't make me not accept 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 & invited me to a healing circle with other Native American Indians.
Mark & I went on a Sunday afternoon to a round house in Fishers. What happened there has never left us. There were ceremonies we watched & then I was asked if I was open to having a laying of hands. With the exception of the one friend, I had several "strangers" lay their hands on my pregnant belly. Some touching, some just hovering. After several minutes people shared what they felt the spirit of our baby was telling them.
Many moving thoughts about our baby were shared; She had a strong, incredible spirit & much energy. She chose Mark & I as her parents. She chose her path. Her gastric issues would be a low priority of the many other issues that would surface.

Teale is the heart of our family. She both bonds us & divides us. She centers us & helps us to believe in our abilities to help her. She teaches us the most & tests our patience & our tenacity.
Remembering ~ "Teale chose her path" brings me the most peace. So even though I often wonder "the what if's." I also know we are living a life with a spirit who wanted to teach us & hopefully we are learning the lessons well.

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. 

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. 

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.

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.

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.