Tuesday, January 10, 2012
Praying, Thinking and Reflecting!!
I've spent these last couple of weeks in deep thought. As I reflect on 2011...it really wasn't one of my favorite years.
Sam started it in a body brace as we dealt with the diagnosis of Perthes...and yet I found hope.
When Sam became more stable my health took a downward spiral...and yet I found strength.
I went on an amazing road trip...and I knew I was blessed.
Ben almost lost his life in a truck accident...and I am thankful that he is still with me.
Sam's Perthes continued to progress...and yet I gained knowledge and found more hope.
My father-in-law was diagnosed with colon cancer...and I continue to pray.
I am often asked how I stay positive and I can assure you that it is through faith alone. I'm not that strong, my emotions are worn on my sleeve for good or bad. I cry at sad movies, heck I can cry at a simple act of kindness. Sam's journey has stripped away my buffers, my shell, my mirage of the strong, independent, capable person I like people to think I am. I hurt deeper, I feel things stronger, and it is only by the grace of God that I pull myself up by the boot straps, smile and carry on. But these challenges...these insights into who I am...are the same things that are changing me, building me, bettering me...shaping me into the person God wants me to become. When I was younger I thought I had things pretty well figured out. I worked hard, I liked obtaining the goals I set, I had plans, I had dreams...and I was going to obtain them.
Hmmm, maybe that was part of the problem...a lot of that thinking was all about me. If I was going to have a successful career, marriage, friendships, life in general...I needed to think about others. I always knew I was a bit stubborn, hard-headed and didn't always take direction very well but I always thought that was a strength. I mean...tell me I can't do something and I'll prove to you I can. I have always been more of an introvert but I want people to view me as an extrovert. I like to be in control and I always thought I did a good job doing it.
But now I'm older, wiser and my journey on this earth has taught me so very much. God knew about my stubbornness and he sent me three children, but two (not just one, that wouldn't have been enough) that required extra parenting and attention. I quickly learned when I became a Mom that I had lost my concept of control. When I found out Ben was dyslexic and had other learning issues I wanted to make that go away. I didn't want him to struggle...and yet it has been through the struggle and challenges that Ben has become the young man I see today. He's creative and he doesn't let much hold him back. He is persistent, smart, impulsive, strong and has one of the most impressive vocabularies and along with his wit, humor and quick come backs he is a joy to be around.
Danielle brought into my world a gentleness and a compassion that forever changed me. She is smart and has a wonderful sense of humor. She has my edge, my determination, my drive but she also has a heap of care and compassion. She shows some of my control issues, my sarcastic sense of humor and my goofiness, but she is stronger and wiser than I was. She can hold her own with both of her brothers and she doesn't feel neglected or left out considering the extra attention they both receive. She has an amazing personality and I enjoy her company.
And how do I even begin with Sam. Sam has taught me so much. If I thought I had any semblance of control Sam quickly let me know that I was mistaken. I will never forget the moment we were transferred to the ICU because Sam didn't seem to think breathing was that big of a deal. I will never forget how helpless I felt as I watched the monitor show me a heart rate that was too high and respiration's that were too low and an oxygen level that couldn't be maintained. I remember dropping to my knees and praying with everything I had for God to help Sam...to save Sam. I realized at that moment that I had no control, and all I could do was pray. I wanted to barter, make promises to God...show in some way, some how that I could still control the situation but Sam's stats quickly erased those thoughts from my mind and I simply prayed.
I wanted Sam to achieve his milestones in the same time frame of a typical child or even better. I wanted Sam to be that child with Down syndrome that defied the odds, that excelled above the rest, that others could look at and feel encouraged. But Sam and God had different plans. Sam didn't crawl until he was almost 2 years old and he didn't walk until he was over 3 years old. Every year I waited and waited for Sam's speech to take off. I was sure that by the time he was 4-5 years old he would be communicating easily and we would be having enjoyable conversations. At 4 years old Sam was still considered non-verbal. He had sounds and some words but he certainly wasn't talking up a storm like the other children with Down syndrome at our NACD evaluations. I had to really listen for Sam's words or to understand what he was saying and that's when I had my "aha" moment. I was a great talker but a not so great listener. Sam required me to become a better listener. He relied on me to talk with him and not at him, to talk at his level and to repeat and add to our conversations. In order for Sam to expand his speech we had to have balanced interactions, something we still strive to work on.
I learned strength and resilience through Sam. Sam's numerous medical issues have required me to be strong and resilient. I had to be able to think on my feet, to not become overwhelmed but instead find my inner strength. I would look at Sam and see his smile through the oxygen mask or watch his eyes light up when his family entered a room, or see him work on his breathing, strength training or therapies just to see our excited expression when he accomplished his goal and I would be stronger. How can I even think of giving up when I'm just the observer and I see this child, my child, fighting, working, challenging himself beyond my expectations.
The hardest lesson to learn has been to slow down and give Sam the time he needs and requires. Sam works with me everyday to instill an appreciation for time. Time given, time spent together, time waiting, focused time, time commitment, quiet time...and the list goes on. I could rush through life, stay on schedule and accomplish so much on my own...because that's what I always did. But then I'm not giving Sam...time. It would be easier to dress Sam instead of wait for him to get dressed on his own. It would be easier to make Sam breakfast then to have him learn how to make it himself. It would be quicker for me to complete the chores then to work through them with Sam. It would be easier for me to fill in the words Sam can't seem to pull out quickly than to wait for him to work them out on his own. It would be easier, it would be quicker...it wouldn't be fair to Sam. It wouldn't be what Sam is so desperately trying to teach me.
I never wanted to be a teacher, it wasn't my passion or calling but I did want to be a good parent. Ben was the first to require me to work more with him. Without training or education and with only the strong desire to help my child I had to figure out how Ben learned. I had to learn how to work with him, help him, challenge him and encourage him. Ben was just getting me ready for my journey into educating Sam. Through my journey with Ben and Sam I have gained a true appreciation for great teachers. I struggle with working with Ben and homeschooling Sam. I couldn't even imagine a class of 20-30 students. I have spent some time in the school system as a parent liaison for special needs families. I have met many great teachers but I still struggle with becoming completely comfortable with how our schools are set up and operate. I feel many schools are doing the best they possibly can to live up to the mandates of our government, but therein lies my problem. I don't feel the government should decide how our children are educated or how and what teachers are to teach. I enjoy working with Sam because I follow his lead, we dive deeper into areas that interest him and skim over those that don't. I don't need to test because my observations guide me on areas he needs more work on. I'm not trained to be a teacher...but could you imagine the wonderful things that could happen if a great teacher was given that freedom. The things our children would learn...the experiences they would have...the learning that could take place. I feel our schools do really well with the Danielle's of the world, those children who learn easily and test well. But we are missing the boat on the gifts our children like Ben and Sam have. They require those really great teachers who are going to figure out how they learn, embrace the differences and are ready to see the amazing outcomes.
Sam has required me to rethink so many things I thought I understood...and to change. I never struggled with school, it was easy for me as it is for Danielle. When I started to homeschool I tried to take my school experience and make it work for Sam. It didn't. He didn't like my well thought out lessons plans. Sam fought me tooth and nail. If Sam was going to work with me he wanted it to be fun. If Sam was going to work with me he wanted me to be available when he was ready. I have learned to incorporate puppets, throwing things, physical breaks, music, toy play, magnets and I never ever refer to it as work. Our schedule is flexible and I have come to realize that I am on Sam's time...not mine. I keep track of those things that work and try to re-create them in other areas of study. I have learned that what Sam doesn't like now doesn't mean he won't be ready for it at a later date...thus the ever growing Rubbermaid tubs of homeschool stuff that exist throughout my house. Sam requires me to be "in the moment" not typing on my computer or talking on the phone, not watching TV or doing a household chore without him...but instead to be there with him...listening, talking, being. I think Sam picks up more from our playing together, building puzzles, travelling, card games, chores, going to the zoo or other community field trips...then any of my scheduled lessons.
Sam has taught me the value of all people. I spent a lot of my younger years critiquing other peoples strengths and weaknesses. As I have gotten older I find myself critiquing my own strengths and weaknesses and now appreciating how we are all different and learning to embrace those differences. What Sam doesn't say is expressed so eloquently in his expressions and actions. I love and appreciate how Sam perceives his world. His reactions are pure, he has no buffers or shell, he isn't afraid to express himself, he chooses not to judge or be judged. He radiates love, joy and an appreciation of e v e r y t h i n g.
Like Sam...I am not worrying about the future...I am living in the day. I will strive to enjoy my time here on earth. I will strive to be present, available, loving and lovable. I am looking forward to each and every day! Good night everyone!