Times of Troubles...

Beautiful isn't she, well not so...she was on aol.com news not to long ago. Sadly, I don't know exactly, I skimmed the article, it's hard to read of a child struggling, at least for me, especially when there life is just beginning. I think of St. Jude's Hospital and how every moment, a struggle is in progress, parents waiting and wondering, praying for any kind of miracle and then I think of my troubles. 

I go to bed and think about my life and lately it's not looking so bright to me. I think here I am at 58 over a half of century of life, and I look at her and think....if I could offer my life to her, if there was a way to transfer I wouldn't hesitate. Why, you might be wondering...because I lay at night and think about my troubles, that for her..she would trade just to live. 

Although on the internet we all talk of our lives casually, it's what we do, it's what we are suppose to do, for you the reader, even for ourselves, who wants to hear of someone else's troubles, right. Yet, when doors are closed the internet is shut down, we all have our own personal struggles. None of us are without them, each finding an ending at it's own pace. For me, I've had a personal struggle for over 10 years...that's a long time. One that was handed to me by someone else, who's own personal journey intertwined with mine, making my life more difficult. And you can't get away from them for one reason or another it is what it is until...until there journey changes, they see more clearly the things they have done. It's the beauty of aging, behind it, leaves many lessons learned, hopefully making for a better life, a better person who evolves with time.

Children like this young man, Sam, who I watched on Katie Couric, a young boy in high school, much older than me physically, dies suddenly from complications of progeria. A gene that ages the body more rapidly than it should, changes his life. Again would trade his own for someone with struggles of the heart and mind. I remember watching this amazing young man with such a positive outlook, talking of what he planned on doing as nothing was wrong. 

Again, I think of the nights I lie in bed thinking of my struggles, the tugs of mind and heart. The feeling of loneliness, the lack of visitations, communication, especially in the winter being a germaphobic, and simply wondering what I am suppose to do sometimes in this, the last play of ones life. Sounds so irrelevant doesn't it. I would have traded lives to wear his shoes. I would have traded even just a moment of my life to experience his amazing positivity,  with a personality that changed so many people, I am sure, as they watched the show. Wishing they had just a touch of his outlook on life. He seemed to make me feel as if I knew him...a bright light in this world, he shined on the show.

I say, it was nice to meet you Sam, and sad to hear of the news you had left this world so soon. I was blessed by your life, simply watching you.

Times of troubles, we all have them...no matter how big or small they consume our lives as they visit. Don't they? Even at my age the journey continues with life still teaching me as the numbers get higher, until it's all over, changing who I am as they come and go. I have my good days and of course bad days, and this winter thus far has been more trying than usual. 

Choices of the heart have to be made this year, one regarding my twin boy's with Down Syndrome, who made me a better person in more ways then I can begin to mention. They found a place in my heart, so deep, I never knew existed. A special needs child teaches the parent, unlike a normal child the parent teach. It's difficult sure, exhausting and challenging, yet it's also rewarding in the end, you come out so blessed just to have had them in your life.

My point in all of this...as I mentioned, today was a tough day for me. In fact this winter, there have been many tears, decisions to make, and more often wondering what's next. I do my very best to stay positive everyday, but there are just those days when it's tougher to climb the hill. So I cleaned like it was a spring day, the sun shining, a pure blue sky, the snow melted, as I looked out the windows it seemed as if winter was gone.

Yet my sadness remained, until I stumbles across this while I was cleaning...

A card that read...

Control is an illusion and so is feeling that there's a list of things,

 you have to do and be.

You don't have to be anything but healthy to yourself,

and in these times, that's quite enough to accomplish,

thank you so very much.

So forget false expectations and don't let them bring you down...

Don't let them take even one precious moment,

of your happiness.

The world needs people who have been through tough times,

and made it.

So you just take it easy on yourself.

You are fine just the way you are.

Thank you... to all the little ones we see, if only in a picture, struggling somewhere to make it to the next day, children like Sam, and my son's who bless our lives just for knowing them or having them in it...make us say for even a moment how trivial the struggles of mind and heart are to us all...when there's is a struggle of life.

May God bless all of you, hold you in his arms, give you the miracle you pray for...and if not...thank you for being here with us..for whatever time. You brightened my life and for that I am so very grateful. 

Life with Disabilites

       Today I wanted to let you into my world with disabilities and what each day can bring my way.  Being a single, empty nester, with OCD (obsessive compulsive disorder and a germaphobic (not sure that's even a word) makes each waking day different. The fact that I am so creative and being that creativity feeds my soul, also makes my days spontaneous and confusing. I often refer to myself as being much like Howie Mandel, the comedian, on America's Got Talent. Pretty much the same age I can understand when he speaks of keeping it private until the World became more receptive to individual issues, more open to speaking and understanding the quirks we often keep behind close doors. It's easier to speak without feeling like there is an elephant in the room, and your it, with everyone starring, thinking what is with them and there mental issues or weirdness. The silence is often the hardest part of being different.

        With that said and times being different it's nice to be able to speak of these things instead of trying to hide the issue as best as one can. I spent my life beginning at age 16 knowing I was different, that what I was doing, no one else around me seemed to be doing the same. At least I didn't notice, I suppose mostly because I spent a majority of my time everyday, trying to do what my OCD needed without letting others know, and believe me it wasn't easy. Try writing a paper in English Class as a high school student and having to start over 3 times, and trying to do it without anyone noticing, for me, that's my number 3 and occasionally a 4 will pop in out of nowhere. Often getting out of bed is difficult, just the same the counting continues, moving the covers back and over my body 3 to 4 times. The hardest part are the days the OCD decides to consume me, extremely stress filled ones, can make my day nearly debilitating, exhausting, and all I can do is cope the best I can, always keeping in mind, there is a new day ahead.

         I may or may not wash my hands 3 times at one washing, maybe walk in and out of a room 3 times, and when it comes to creating...whee! that can be just as distracting. Starting a project 3 times can often be exhausting to the point I will have to sit and do nothing...which often can even be worse. Sitting still for me without something in hand to work on is not good, my creative soul, it says oh no, we are creating. It's often a catch 22 there is no win and that's when it really gets tough, and even crazy. Wow, crazy, I always hated that word, even the word mental, and odd, didn't sit well because that's how some of us look to the world. And words that often become audio if someone discovers our disabilities, can be debilitating making alone seem so much better than the world outside. It's how I became to focus on words, study words, appreciate the usage, and there effect on us as humans.

        For me it's always been the word, your mental, that people used to hit my inner core and shatter my heart, because they didn't view me as human, simply odd. Sadly though we feel everything the same it's simply our genetics, the way we are wired that is different and that says odd to most people. Even though we are so incredibly open in this world today, we seem to have lost or are losing our compassion and understanding. It's somewhat like being racist, slavery is long gone there are inter- racial marriages, yet racism still remains almost just as strong in some ways, as it did when I was young in the sixties. We seem to be moving forward with the world, yet, are thinking hasn't come anywhere near catching up to the openness this new world allows. In many ways we still think very primitive, non accepting, and so opinionated, without processing first. Trying to imagine ourselves in another's shoes.

          Having twins with Down Syndrome, was devastating, the thought that I had brought special needs children in this world of openness, yet lacking the understanding and acceptance totally. Much like Julie, an amazingly talented worker of yarns, not to mention her daily tasks with a special needs child, who owns the blog Little Cotton Rabbits  who's son Toby, has autism, it's easy to relate to Julie as most Down Syndrome children suffer with autism as do mine. It's time consuming and exhausting especially as they age, with a majority of handicap children they are not as appealing to others as they mature, unlike the infant and toddler stages. I too can remember at night, trying to keep them quite so not to disturb the rest of the house as they slept, that alone is a task in itself. When my twins were born my heart broke, I would have given my life to change it, make them normal especially in appearance to cause less starring. My heart ached I was so angry inside for them for the first three years of there life, knowing  the words would fly and those dreaded stares I knew would begin and worsen with age. Especially when I had a bit of experience myself.

Say hello to my special need guys!

                                           

          Todd Michael - born 5 minutes before - Taylor Ray

        They are not identical just the absolute loves of my life.

       
          But as preemies of 2 lbs.each, tended to slow there growth over those years, and in that I learned something very valuable, no matter how people starred, or how often I was approached, sadly with people saying things like, ah, are they twins, yes I'd respond, then it would be ah, I am so sorry, honey you know, God gave you them for a reason. Standing there in my mind I'd think, yeah, okay, sure, he put them down here as they are, to teach me something, like I was so special compared to any other mother. I'd find myself thinking what kind of God would do such a horrible thing at the expense of a child, and especially two.

         Well, as they grew, I grew, I began to notice things daily and with that came the understanding of it all, the blessings that made up for the exhausting times. The constant smiles, the freedom to do and act as they were diagnosed, with such incredible happiness and lack of fear, of the audio words, the stares, anything the world could throw at them didn't matter, that smile found it's way to there face and my heart. Sure they had there little ways that Down Syndrome and autism would bring, yet it was there world, and it belonged to them, to be and act as they were and are in life. That's when I realized just because I was of the human race that could process thoughts, appeared visually normal, voice opinions, use those audio words, I didn't have too, nor did I have to process them anymore, when thrown my way.

               As far as my twins I don't believe we are given disabilities, no matter how extreme they may or may be, or given children born with disabilities because we are special people. I believe in God's eyes we are all special, and what comes with us from birth or along the road, those obstacles, those oddities, and difference are meant to teach us all, what God has always wanted and expected of us. To take those obstacles do the best we can, learn from them as we go and make this place we call Earth the best place, a peaceful excepting place, filled with unconditionally love, understanding, and total acceptance. After all it's said, God does not give us more than we can handle, to just give our utmost best, we just ask that he carries us along the way, with each obstacle until we figure it out. And when we do, share whatever knowledge we gain with others, to make a more understanding, excepting and compassionate world.

          The years the twins were in my life daily, they taught me a lifetime of compassion, understanding, and love for all humans, unconditionally. That is was okay for me to count to 3, and wash my groceries after bringing them home, or spraying them with Lysol. That's my germaphobic side which heightens in the winter, as I hibernate each season which isn't always easy. In fact, it's rather lonely, despite it all, it's okay to do what I have to, because that's who I am.  Knowing it makes it easier to say it to myself and out loud, Yes, I am different, just like we are all different, and yes, mine may show sometimes and I now speak of my days more openly...I'm okay, because I am uniquely me. Without it, sure life would be easier, but easier doesn't teach us about ourselves, about life, or other people. It doesn't educate us on how much we differ from others, or teach other what it means, that although we are different...we feel, we hurt, we cry, we laugh, we scream, we dream, we hope, and we love just as anyone else, despite the fact we may look different or do things oddly. We are of the human species just like everyone else.

          So I will continue my days even though some are tougher than others, yet I will do so on my terms, ignoring the audio words, always at my pace, and with a smile, knowing I am not a problem, those who use audio words, constant stares, and often bullying are the problem, with much to learn from people like us, with disabilities. Get to know us, speak to us, say hello, ask us about our day. We are not as frightening as you may think, we need people, we need to be heard, excepted unconditionally. And listen closely when we want or need to talk if times are tough, you will make a difference, and you may just save or change a life.
   
        With all that said, Hi, I am Pamela, it's nice to meet you. I have OCD, I am a Germaphobic, and say it proudly,  yet they do not define my life, or who I am. They are merely my obstacles in this life. Although I take medication for my OCD, I live my life surrounded by positive visual words I can see everyday, whether on my walls, my fridge, or maybe just on a piece of paper in front of me. They are there to remind me, I am just as much worth living a good life, the best I possibly can, like anyone else, with hopes, dreams, the desire to do things maybe great things, to have friends who truly understand, yet better we want what anyone else does, to love and be loved in return, totally for who we are, and always unconditionally.

Speak of me, but if you don't know me, say nothing at all, for silence is better then audio words of something which you don't understand, until you get to know me. For then you will find, I too, despite my differences, am like anyone else, desire to simply be treated as human. Author, Pamela T.

Happy New Year, dear readers...

My wish for all in 2014

 acceptance, compassion, love surround you everyday,

 and bring you many blessings.