I love you but please don't touch me. How Do I Even Deal?
It's kinda hard to say don't touch me when you are standing in a condolence line at a wake for your 39 year old uncle. We estimated near to 500 people who came to my uncle's wake and funeral. God really put his hands of peace and protection around me for sure. There were times of anxiety and times of unbearable pain physically and emotionally. But through it all I felt the Lord telling me that I could get through it for my uncle. I pushed through for him and only him. Some people with SPD also feel emotion more intense than someone who doesn't have SPD. The pain I feel in losing him doesn't even come close to the pain I feel for his wife and 12 year old daughter, for my dad and his sisters, and for my grandparents who are in their 70's who never once thought they would have to bury one of their children. My heart aches to the point of not being able to breathe. I feel like I'm feeling for everybody; all of their emotions all at the same time.
It was amazing to see the outpouring of love from the small community he grew up in. My Uncle Mike was a genuinely caring man. His happy spirit was a mood lifter, a light, and just an all over "feel better because life will get better attitude" he carried with him. His passion for his family was undeniable and the love he had for the outdoors and creation in general was inspiring.
I was his first niece. The very first on the scene. As a matter of fact, I was his ONLY niece for 22 years until my little cousin Clarissa was born. Two years later he was made a great uncle when my daughter Violet arrived.
Whenever I was around he made me the center of his attention. I was always his "little princess". His "don't worry be happy" attitude always overrode whatever sour mood I was in. He was always the Tickle Monster and my Silly Ole Bear with a Towel.
Growing up he would be my favorite part of visiting PA. We would make the 2 day drive from Oklahoma to Pennsylvania to visit family. Back then it was just me and my brother Aaron, so we were always the focus of my grandparents, uncle and aunts. While my aunts played Barbies and games with me, my uncle was always right there not wanting to miss any bit of the short visit he had with me or my brother. Sometimes he would even play Barbies with me not caring how "not tough" it made him look. Family was very important to him. I think having his big brother (my dad) and his family was a highlight in his year and he looked forward to seeing us whenever we were able to visit.
Being from flat ole Oklahoma visiting the Great Up North was a wicked adventure for my little brother and I. Snow was ALWAYS the big thrill of our visit and my Uncle Mike knew where all the good sledding spots were. I remember one year he took us to the church parking lot to sled down the snow piles left from the plows because there was so much snow that year. At the end of that fun time my legs were frozen and tired so he carried me all the way back to Grandma's house. That's how much he loved me.
When we moved from OK to PA my brother and I were very excited to be close to our grandparents and uncle and aunts. We never ran short on people to play with us. I'm so grateful to my dad for moving us closer to our family. Even though it was only for 5 years I can honestly say it was the most fulfilling 5 years of my brother's and my life. We got a chance to know our family in a more intimate way and were loved and poured into more than I can ever remember.
My uncle was a wonderful husband. His marriage to my Aunt April taught me that it's okay to be silly, angry, playful or annoyed. That no matter what, you love each other for who the other is.
His love for his daughter was incredible. I can't begin to tell you how much his little family went through. A year after they got married they happily found out they were pregnant with my cousin Christine, aka my TeanBean. Christine was born with a couple holes in her heart and against quite a few odds and a few open heart surgeries she is happy, healthy and active today.
Weeks after my aunt had Christine she got really sick. My aunt ended up with Postpartum Cardiomyopathy (meaning her heart more than doubled in its size). She had only a 5% chance of living. They put her in a medically induced coma for 3 months until her heart was strong enough to sustain her again. Through all of this my uncle remained strong in his faith in the fact that his girls would make it through never wavered.
I still can't believe he is gone. I can't get my head to wrap around the fact that I'm never going to see him here on earth ever again. I'm angry because he should still be here, that a work accident took him from his family. What the heck? Seriously. Ridiculous. Absurd. Unbelievable. Pissed off. These are all words that keep going through my head.
I never stop praying peace over my aunt and his daughter. Or over the rest of our family.
I've been very fortunate not to have had to experience the death of anyone who I was super close to in my family. My GG passed away when I was 15. I was close to her. But at the same time, I feel it was easier to process because she was older. I still have 3 sets of grandparents who are living and a great grandmother who is in her 90's and still going strong. I can't understand why this happened. I know life brings moments like these but it doesn't make it any easier. I guess I'll just keep praying and keep living the way my uncle would have liked to see me live; happy and appreciative of everything I am fortunate enough to have...my husband, my daughter, my family.... And a life of freedom to be and do what my heart desires for the most part.
I will always love that silly ole Bear. I really really will.
Monday, April 9, 2012
Monday, March 12, 2012
SPD. Explaining me.
I wanted to write about SPD and how it makes me me; as a Mother, as a Wife and as a Pastors wife. I feel like, well...I know that the way I may be perceived sometimes is not what really is. So this is my way of seeking understanding and educating.
I don't want my first real "blog" post to be super long and boring so I think I will just start with a brief definition of Sensory Processing Disorder which is: Difficulty in the way the brain takes in, organizes, and uses sensory information, causing a person to have problems interacting effectively in the everyday environment. Or Difficulty perceiving or interpreting sensory data taken in through sight, sound, touch, movement, or taste, this disorder can have severe consequences in many aspects of learning, behavior, self-regulation and daily functioning. Formerly referred to as sensory integration disorder.
As a child I was the awkward girl labeled with ADD. Any child who had a hard time concentrating, had strange quarks and behavioral issues and learning problems was automatically stamped with the ADD diagnosis. I was on medication for awhile until my Mom decided the side effects of the medication were way worse than the actual behavior. Props to my Mama for not taking the easy road when it came to dealing with me. As a girl I always had a hard time with social interaction. I was random in thought and said everything that came to my mind no matter how inappropriate it was to the situation. I hated being alone. Time-outs alone in my room lead to all out screaming fits full of anxiety and anger because I could feel the emptiness of the space I was alone in, which left me terrified. Getting dressed was a daily battle for my Mother because I would refuse to wear certain items of clothing based on how they made my skin feel. I wasn't old enough to explain to my mom, "No Mom, I cannot wear those jeans because they itch my skin so bad I would rather claw myself out of them than try to get through the day wearing them." Or, "No Mom, I cannot wear those leggings without tucking my shirt in, even if you think it looks silly, because the elastic against my skin feels like it's cutting into me and hurts." And the best argument, "No Mom, I will not wear my shoes because they feel like they are suffocating my foot. And how is it possible that my shoe can suffocate not only my foot but the rest of me too?"
When it came to school I never got good grades. I was always getting in trouble for not focusing or paying attention. I had to get extra time on tests and still with the extra time never did very well. Looking back I couldn't put into words why I struggled in the classroom. Now I know that all of those times I chewed out the person sitting behind me because he had his feet on my desk or because she was leaning too far over her desk getting too close was because I could literally feel the space and air between us and ever tiniest movement was like having an elephant sitting beside me or behind me. Every clicking pen, sneeze, sniffle, ticking of the clock, scrape of the chalk on the chalk board, someone simply swallowing water, smacking their gum, wagging their feet or wearing perfume even if it was just trace amounts, completely and utterly consumed every bit of me. Which then left nothing to give to the task at hand in the classroom at that moment in time. Need I even mention the florescent lights that bugged me out so much that I got headaches and left me extremely irritable. Furthermore God have mercy on you if you touched me without permission.
You will be surprised to know I've dealt with these issues my entire life. Even now to the same severity; if not worsening over the years. It was only just over 3 years ago that we even learned that there was a name for my "uniqueness" as we call it. Kids who are diagnosed with SPD now are automatically put into occupational therapy to help them deal with and handle their sensory problems...I wasn't so lucky unfortunately. And this is why I am writing this blog. I want to be understood and I want to write about my everyday struggles in my own little world.
I try my best to function in large crowds with bright lights and loud noises and nauseating smells that the average person may not even be aware of. I love my husband and I love the work God has called him to and since God called me to be his wife I am equally called to be by his side to help him with his ministry; with OUR ministry.
It's hard being a pastors wife with SPD. I know I may come across as a snob sometimes or just plain cold or rude, but believe me I try to be as gracious as I can when people come up to me in church or public to take my hand or rub my back or offer their hand to shake simply doing so out of the kindness of their heart...all while I try not to throw up on them out of anxiety and literal pain in the process.
We all have a desire to be understood and this is my way of getting it out there. I thought the name of this blog was entirely appropriate because in the world of Pastors Wife I know I am called to be KIND and GENTLE. My desire is to inform in a KIND and GENTLE way that, I DO LOVE YOU BUT PLEASE DON'T TOUCH ME. :-)
I don't want my first real "blog" post to be super long and boring so I think I will just start with a brief definition of Sensory Processing Disorder which is: Difficulty in the way the brain takes in, organizes, and uses sensory information, causing a person to have problems interacting effectively in the everyday environment. Or Difficulty perceiving or interpreting sensory data taken in through sight, sound, touch, movement, or taste, this disorder can have severe consequences in many aspects of learning, behavior, self-regulation and daily functioning. Formerly referred to as sensory integration disorder.
As a child I was the awkward girl labeled with ADD. Any child who had a hard time concentrating, had strange quarks and behavioral issues and learning problems was automatically stamped with the ADD diagnosis. I was on medication for awhile until my Mom decided the side effects of the medication were way worse than the actual behavior. Props to my Mama for not taking the easy road when it came to dealing with me. As a girl I always had a hard time with social interaction. I was random in thought and said everything that came to my mind no matter how inappropriate it was to the situation. I hated being alone. Time-outs alone in my room lead to all out screaming fits full of anxiety and anger because I could feel the emptiness of the space I was alone in, which left me terrified. Getting dressed was a daily battle for my Mother because I would refuse to wear certain items of clothing based on how they made my skin feel. I wasn't old enough to explain to my mom, "No Mom, I cannot wear those jeans because they itch my skin so bad I would rather claw myself out of them than try to get through the day wearing them." Or, "No Mom, I cannot wear those leggings without tucking my shirt in, even if you think it looks silly, because the elastic against my skin feels like it's cutting into me and hurts." And the best argument, "No Mom, I will not wear my shoes because they feel like they are suffocating my foot. And how is it possible that my shoe can suffocate not only my foot but the rest of me too?"
When it came to school I never got good grades. I was always getting in trouble for not focusing or paying attention. I had to get extra time on tests and still with the extra time never did very well. Looking back I couldn't put into words why I struggled in the classroom. Now I know that all of those times I chewed out the person sitting behind me because he had his feet on my desk or because she was leaning too far over her desk getting too close was because I could literally feel the space and air between us and ever tiniest movement was like having an elephant sitting beside me or behind me. Every clicking pen, sneeze, sniffle, ticking of the clock, scrape of the chalk on the chalk board, someone simply swallowing water, smacking their gum, wagging their feet or wearing perfume even if it was just trace amounts, completely and utterly consumed every bit of me. Which then left nothing to give to the task at hand in the classroom at that moment in time. Need I even mention the florescent lights that bugged me out so much that I got headaches and left me extremely irritable. Furthermore God have mercy on you if you touched me without permission.
You will be surprised to know I've dealt with these issues my entire life. Even now to the same severity; if not worsening over the years. It was only just over 3 years ago that we even learned that there was a name for my "uniqueness" as we call it. Kids who are diagnosed with SPD now are automatically put into occupational therapy to help them deal with and handle their sensory problems...I wasn't so lucky unfortunately. And this is why I am writing this blog. I want to be understood and I want to write about my everyday struggles in my own little world.
I try my best to function in large crowds with bright lights and loud noises and nauseating smells that the average person may not even be aware of. I love my husband and I love the work God has called him to and since God called me to be his wife I am equally called to be by his side to help him with his ministry; with OUR ministry.
It's hard being a pastors wife with SPD. I know I may come across as a snob sometimes or just plain cold or rude, but believe me I try to be as gracious as I can when people come up to me in church or public to take my hand or rub my back or offer their hand to shake simply doing so out of the kindness of their heart...all while I try not to throw up on them out of anxiety and literal pain in the process.
We all have a desire to be understood and this is my way of getting it out there. I thought the name of this blog was entirely appropriate because in the world of Pastors Wife I know I am called to be KIND and GENTLE. My desire is to inform in a KIND and GENTLE way that, I DO LOVE YOU BUT PLEASE DON'T TOUCH ME. :-)
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