There is a video floating around facebook right now that hits home for my husband, Mark and I. The video is of a young Mom talking about "The Last Time."
She has a son diagnosed with autism and she tells a story about being in line to see Elmo, with her raging 65 pound son. That was the moment she realized his life was different from those children and families around her.
We had this exact moment, when Teale was 4 years old. Her raging was new and we were still trying to figure out the "what' of it. Was it our parenting, was it the recent birth of our youngest child, was it Teale's brain damage? Teale adored Elmo. We had just had a Birthday party for her in December with Elmo showing up as a surprise. Teale was beside herself, excited to have Elmo at our house. She didn't even notice her favorite cousin was suddenly missing. Zac had volunteered to wear the Elmo costume for Teale. Her joy was contagious, you couldn't help but smile as she used sign language and her voice to talk to Elmo. It is one of my most favorite memories of a time we gave Teale, exactly the perfect gift of joy.
So naturally, when Elmo came to town a few months later, we trotted off to our favorite children's museum, to see him. We had to stand in a very long line with many typical families. I had Gwenn, our newborn, in a sling on me. Beau was 7 years old and a good sport, knowing Teale's love of Elmo. Teale did not understand the line, she didn't understand taking turns. Teale wanted Elmo and there was no reasoning that could be done. Mark tried to control her as people stared and whispered. She appeared "normal' in those days and we looked like terrible parents, who spoiled her. The rages were new and we had no clue how to deal. The doctors had not warned us that her cerebral palsy and severe brain damage could cause much mood dysregulation. So Teale raged and in those moments, I remember wanting to scream at the top of my lungs, she has severe brain damage. You see, the invisible can be quite difficult. The child who presents "normally" makes others judge you harshly. I have been heartbroken by many strangers and "friends" alike, who think we should control Teale.
So let's fast forward to just a few weeks ago. Teale is now 19 years old and we have offered to take her and a friend to The Razorsharks game in our hometown. The Razorsharks are a basketball team and on that day, much to our surprise, Elmo is there. My 19 year old, 230 pound daughter is thrilled! This moment, is a deja vu for me. I am taken back to when our family was young and Teale's mental illnesses were not yet diagnosed. I am taken back to when hope lived in my heart much more strongly than it does today. I was naive back then, I was sure we would conquer all and Teale would live a typical life. Tears are dripping down my face as the words spilll from me right now. That moment when you finally realize and or except your child's life is not going to be, the dreams and hopes you had, is BRUTAL.
I'm not sure when I realized that love would not conquer all. I'm not sure what caused my shift in realizing Teale would never be a teacher or a musician or any kind of professional. I'm not sure when it hit me, she would not marry or have children of her own. It was slow and at the same time, it was all at once, when my heart broke. When I finally understood my daughter would never outgrow needing Mark and I.
So what is the sunny side of this? What fantastic life lesson have I learned?
Here it is, love does not conquer all. the Bible implies that if we believe enough, all things are possible. I am a person of faith, I believed Teale would use her right arm, because I would find that magic cure. I believed she would read well and learn at an age appropriate level. I believed Mark and I were strong enough, good enough and caring enough to cure Teale, of all she struggled with. I believed in the miracles, that would make her better.
So, at what point did I come to the understanding that Teale is perfect in her own way? When was that moment of clarity? Or have I even hit it yet? The truth is I am in and out of those moments. I have faith and God by my side, but I am a Mom, full of emotions. I hurt for the losses Teale experiences and does not even understand. I hurt for myself, the knowledge she will always need Mark and I. The understanding that our "Golden Years" will never be alone. As others complain about empty nest, I wish for it...
There are times I wish I could go back to Teale's birth and right, the wrong. There are times, it feels perfect, that this is my family. This is what Mark and I were destined to be. My grief is real and somehow unending. Every milestone a friend's child achieves can throw me into that dark place, where the "what if's" haunt me.
So as I thought about "the last times" in Teale's life, while watching the video of this young Mom, tears rolled down my face. Seeing her hopes and dreams crushed, reminded me of myself. It reminded me of the strength I can display on the outside, while I am seriously breaking on the inside.
The pain is not nearly as bad as is was in the early days. While I watched one milestone after another, not achieved. I then tried to find strength, in the slow progress, I did see. I have accepted our path in many ways and in even more ways, I believe, I have embraced it. I have embraced the community of people Teale is a part of. I have chosen to work and volunteer in the field, as it feels more like a calling, than a job to me.
But, I need to leave you with one last thought, it hurts, it hurts me every day of my life, to watch my daughter to struggle. I will not apologize for this, I will not sugarcoat my loss. Teale will never be the same as a typical child.
I will never be the same, as I was, before she came into my life.
She has a son diagnosed with autism and she tells a story about being in line to see Elmo, with her raging 65 pound son. That was the moment she realized his life was different from those children and families around her.
We had this exact moment, when Teale was 4 years old. Her raging was new and we were still trying to figure out the "what' of it. Was it our parenting, was it the recent birth of our youngest child, was it Teale's brain damage? Teale adored Elmo. We had just had a Birthday party for her in December with Elmo showing up as a surprise. Teale was beside herself, excited to have Elmo at our house. She didn't even notice her favorite cousin was suddenly missing. Zac had volunteered to wear the Elmo costume for Teale. Her joy was contagious, you couldn't help but smile as she used sign language and her voice to talk to Elmo. It is one of my most favorite memories of a time we gave Teale, exactly the perfect gift of joy.
So naturally, when Elmo came to town a few months later, we trotted off to our favorite children's museum, to see him. We had to stand in a very long line with many typical families. I had Gwenn, our newborn, in a sling on me. Beau was 7 years old and a good sport, knowing Teale's love of Elmo. Teale did not understand the line, she didn't understand taking turns. Teale wanted Elmo and there was no reasoning that could be done. Mark tried to control her as people stared and whispered. She appeared "normal' in those days and we looked like terrible parents, who spoiled her. The rages were new and we had no clue how to deal. The doctors had not warned us that her cerebral palsy and severe brain damage could cause much mood dysregulation. So Teale raged and in those moments, I remember wanting to scream at the top of my lungs, she has severe brain damage. You see, the invisible can be quite difficult. The child who presents "normally" makes others judge you harshly. I have been heartbroken by many strangers and "friends" alike, who think we should control Teale.
So let's fast forward to just a few weeks ago. Teale is now 19 years old and we have offered to take her and a friend to The Razorsharks game in our hometown. The Razorsharks are a basketball team and on that day, much to our surprise, Elmo is there. My 19 year old, 230 pound daughter is thrilled! This moment, is a deja vu for me. I am taken back to when our family was young and Teale's mental illnesses were not yet diagnosed. I am taken back to when hope lived in my heart much more strongly than it does today. I was naive back then, I was sure we would conquer all and Teale would live a typical life. Tears are dripping down my face as the words spilll from me right now. That moment when you finally realize and or except your child's life is not going to be, the dreams and hopes you had, is BRUTAL.
I'm not sure when I realized that love would not conquer all. I'm not sure what caused my shift in realizing Teale would never be a teacher or a musician or any kind of professional. I'm not sure when it hit me, she would not marry or have children of her own. It was slow and at the same time, it was all at once, when my heart broke. When I finally understood my daughter would never outgrow needing Mark and I.
So what is the sunny side of this? What fantastic life lesson have I learned?
Here it is, love does not conquer all. the Bible implies that if we believe enough, all things are possible. I am a person of faith, I believed Teale would use her right arm, because I would find that magic cure. I believed she would read well and learn at an age appropriate level. I believed Mark and I were strong enough, good enough and caring enough to cure Teale, of all she struggled with. I believed in the miracles, that would make her better.
So, at what point did I come to the understanding that Teale is perfect in her own way? When was that moment of clarity? Or have I even hit it yet? The truth is I am in and out of those moments. I have faith and God by my side, but I am a Mom, full of emotions. I hurt for the losses Teale experiences and does not even understand. I hurt for myself, the knowledge she will always need Mark and I. The understanding that our "Golden Years" will never be alone. As others complain about empty nest, I wish for it...
There are times I wish I could go back to Teale's birth and right, the wrong. There are times, it feels perfect, that this is my family. This is what Mark and I were destined to be. My grief is real and somehow unending. Every milestone a friend's child achieves can throw me into that dark place, where the "what if's" haunt me.
So as I thought about "the last times" in Teale's life, while watching the video of this young Mom, tears rolled down my face. Seeing her hopes and dreams crushed, reminded me of myself. It reminded me of the strength I can display on the outside, while I am seriously breaking on the inside.
The pain is not nearly as bad as is was in the early days. While I watched one milestone after another, not achieved. I then tried to find strength, in the slow progress, I did see. I have accepted our path in many ways and in even more ways, I believe, I have embraced it. I have embraced the community of people Teale is a part of. I have chosen to work and volunteer in the field, as it feels more like a calling, than a job to me.
But, I need to leave you with one last thought, it hurts, it hurts me every day of my life, to watch my daughter to struggle. I will not apologize for this, I will not sugarcoat my loss. Teale will never be the same as a typical child.
I will never be the same, as I was, before she came into my life.
