Shifting Gears: A Reflection from Summer

Carefree days. Sleeping in. Reading a good book. Sipping iced tea on the back patio. Sounds great. But that's not what summer looks like at my house. Nope. Not gonna happen.

Before my son was diagnosed with Tourette Syndrome, I didn't know why our household felt so crazy in the summer. Why did he struggle so much with the unstructured days? I knew he missed school. But why was it so difficult for him to find his groove? 

And as the last day of school approached each year, I would feel panic. I didn't like to admit it. But summer meant trying to survive getting through the day without a meltdown -- mine or his or both!

Tourette Syndrome is on a spectrum and usually has other symptoms that accompany the vocal and motor tics. For my son, the other symptoms make it difficult for him to be flexible. He can be easily frustrated when things don't go as planned. So when life feels open-ended or unpredictable like in the summer, he gets frustrated more often.

When he is at school, these tendencies are lessened by the predictability of the day. He thrives in the school environment, in part from our amazing school and teachers, but also because he loves to learn. He loves the schedule on the board. He loves being surrounded by peers. But also because he is an amazing, courageous, bright kid who doesn't let his disability get in the way of living life. 

As his mom, I realized early on that he needed a schedule for the long summer days. But life is not like school and you can't plan every moment. Sometimes you have to be flexible. And for kids with Tourette Syndrome, that can be feel almost impossible. Summer days can feel really long for all of us.

So for years I just survived summer. 

This past year I've been given the gift of connecting with other moms who have felt like me. Moms with kids who don't fit the mold and make life interesting and keep you on your toes. I asked these friends who "get it" to pray for me. I asked them to pray with me that God would show me what to do differently. I felt like I had tried everything in the past.

This year I wanted to thrive not just survive.

Then one day I was with an acquaintance who homeschools her kids. She mentioned how she was looking forward to the summer. No more lesson planning. No more schedule. Time to just relax with her kids. I smiled and thought, "Not at my house."

But something clicked. My son loves to learn. He loves school. I thought, "This summer I will homeschool my kids in the things they love. Art. Science. Nature. Cooking. Reading." I have always tried to do fun things in the summer and be creative, but not with the mentality that I am not on vacation. I suddenly switched gears and thought, "It's time for me to get to work!"

I got online and discovered the world of Pinterest. I really didn't need another social network of sorts, but it was an amazing resource. I had a blast getting ready. The days began to fall into place. My favorite day was Georgia O'Keefe Day. Both kids were inspired by this amazing artist to create larger than life works of art.

For the first time in years, I was joyful and excited about summer. It became an answer to my heartfelt prayer. I had shifted into a new gear.

Did my son shift gears too? Not exactly. He still gets stuck, and we had difficult days. But that's a big change from difficult weeks!

This afternoon he had no idea I was writing about my summer. But as I watched him swing in the backyard and we chatted, he said, "Mom, you teach me a lot of stuff. You teach me about art and science and about God."  A gift beyond words to this mom.

I love our public school. I have no plans to home school my kids. But I love that my son got to enjoy his summer in a new way because his mom shifted gears.

And this summer, I discovered once again how I can be thankful for what I am learning because my son has Tourette Syndrome. Life is meant to be lived one day at a time. I need to be gentle with myself and not expect so much. I can ask for help and look for support from those who can truly give it and let go of those who can't. And I am discovering how to live life with open hands.

And I am thankful for a summer to thrive more days than not! Truly thankful. I was actually sad that school started last week. Now that is a miracle!

The Power of Letting Go

I am powerless over so many things -- changing another person, the weather, the stock market, Tourette Syndrome, crazy drivers, power outages, health changes, infertility, and the list goes on. Could you add to the list?

For years I equated being powerless with helpless. But my journey has helped me see that I may be powerless to change my circumstances, but I am not helpless in them. I may not like them, but I always have a choice about how I will respond. When I finally accept what I am powerless to change, only then do I see what I can change and grow spiritually.

The only thing I have the power to change is me. And maybe that is why I resist admitting I am powerless. For years, I didn't want to see that. But I've learned, slowly, that I can always choose my attitude. I can choose if I want to stay stuck. I can choose if I want to ask for help.

Sometimes I don't want to choose. I want to try to change other people or fight against my circumstances.  I don't want to accept what I can not change. But that just feels miserable after a while.

If you are familiar with the 12 Steps of AA and Al-Anon, then you know that the first step is to admit you are powerless and your life has become unmanageable. These steps have brought me so much healing and helped me discover how much God cares for me. Truly, truly cares for me.

I now know what happens when I try to control what I am powerless over. I get crazy. I get irritable without even knowing it. I make frantic decisions. I don't have any peace in my soul.

My son struggles with Tourette Syndrome. He is a courageous boy who has learned to live his life with a disability. As his mom, I wish that I could take away the struggle. I have had to admit I am powerless over Tourette Syndrome and how it affects our family life. I don't like it some days. I wish we didn't have to live with it. Some days I don't know how to parent a child with a disability. Or I think I can handle it on my own. My recovery work has helped me know how to navigate life with Tourette's.

When I admit I am powerless, I begin to discover that I am truly not helpless. I can turn over my life to the care of God and ask him for help. And this is where I want to live. This is where I know peace.  It's where life becomes an adventure!

Our son struggles to enter into large crowds. He has always struggled with this, but now we know why. Tourette Syndrome often includes sensory defensiveness and obsessive compulsive tendencies. Recently, we went on a retreat with our faith community. We knew he would struggle but were surprised by how much he regressed. Getting out of the cabin to go to breakfast the first morning was a nightmare. (From my perspective!) We finally got out the door, and it didn't get much better.

On the way back to our cabin after the morning activities and lunch, I finally let go. I was tired of nagging, fighting, reasoning and threatening. Nothing was working. I asked God to help me let go and show me how to move forward.

This is when my faith and my life collide.  When I step back and let go of control. I admit that I am powerless over the situation and need help. I let go and ask God for help. I get out of the way.

Later, we let our son know that this situation was not working for our family. We told him we were not mad, but we were not going to continue to stay if things didn't change. We let him know that he needed to decide if he wanted to stay or go home by dinner time.

And then I let go. I let go of the outcome. I let go of expectations. I enjoyed the afternoon.

Our son had a great afternoon. He made the choice to stay. And he didn't want the weekend to end!

When we got home, we debriefed and asked him what we could have done differently. I shared with him how I don't like to sleep in strange beds so I like to see a picture of the hotel room on the internet before we go on a trip. That's how I take care of myself.

I asked him if it would have been helpful if we had let him look at the camp location on the internet before we went. He said, "No....but could we go early next time before everyone arrives so I can see the place without all the people first?"

Wow! What a great idea!  Yes! Yes! And how wonderful that he came up with it himself.

For me, that is the best part of letting go and asking God for help. It gives other people the freedom to grow and learn. I get out of the way! Our son discovered that weekend that he is not helpless. He has choices about how to live life with a disability.

May I learn from him how to be so brave!

The Library

I love going to libraries. I love the rows of books. I love the quiet. I love how I can browse through cookbooks, novels, and paperbacks at my leisure. I love the smell of old wood desks and the echo of footsteps in libraries with grand ceilings and wood floors.

This week I was struck by how amazing it is to have access to public libraries. It is so easy to take for granted what I have always had available to me.

A few years ago I remember hearing about The Camel Library in Kenya. I remembered this story again this week and thought about the camel that carries books to villages in Kenya so that children can have access to them. What a creative and amazing idea. A public library that fits the cultural context in which it was born.

I had never thought about how the public library is a relatively new institution in America. My grandma grew up in the Los Angeles area when public libraries were just being established. Yes, our tax dollars at work. But it is a wonderful use of those dollars. I now live in a relatively small city with four public libraries. And I can get books sent from other libraries in my county to my home library. I have access to thousands and thousands of books!

One of my favorite books is Three Cups of Tea by Greg Mortenson. I would encourage you to pick it up if you haven't read it. Mortenson writes about how he attempts to climb K2, the second highest mountain in the world, but never reaches the summit. After he and four other climbers complete a 75-hour life-saving rescue of a fifth climber, Mortenson takes a wrong turn on the trail and ends up in the small village of Korphe. Physically exhausted and ill, Mortenson was cared for by some of Korphe's residents while he recovers.

The scene that jumped out at me is when the author sees the children of Korphe gathered together every day to practice their lessons. They don't have a teacher or a school or books or pencils. But they are so thirsty to learn that they practice their arithmetic together by drawing with sticks in the ground. The book goes on to tell the story of how Mortenson fulfills his promise to build a school for the village.

I read the book when my son was starting first grade. I was struck by how I took for granted that my son had a school to attend. I am so thankful for my son's school -- for classrooms, books, pencils, pens, tables, chairs, art, science, music and so much more. And most of all for teachers! I have so many friends and family members who are teachers. Thank you for teaching our kids!

And this year, my son, who is now in third grade, has had to learn to live life with Tourette's at school. I am so thankful for all the support he has been given at school. He is in a community that wants to listen and learn about his needs. He feels safe and loved there. A gift beyond words.

The simple act of walking into the library caught my attention. I want to pay attention to the people and places that I take for granted. I want to say thank you.

Perpsective

I posted this picture on Facebook this week. Some of you enjoyed it too. It made me giggle and think about the warm molten chocolate cake at my favorite restaurant in town. You got a favorite too?

The same day I posted it, I had a very difficult conversation with my son as I was putting him to bed. His vocal tic was very active that day and interfering with speaking. As I said good night, he said, "Mom, why do I have Tourette's? It's like God spun a wheel and it landed on me. Everyone else got one millionth of a chance of getting it and I got it all. It's not fair."  I gave him a big hug and said, "Nope. It's not fair."

Right now life's doesn't feel fair to an eight year old boy. I understand. I had the same battle inside when I was struggling to get pregnant month after month after month. It was especially difficult on the days when a friend would announce she was pregnant and include that extra detail that it only took one try. And it didn't help when people would tell me, "Oh it will happen. You'll get a baby one day." I wish I could tell my son that some day his tics will go away. But I don't know that. So I don't say it. Some one has already said it to me though. Ugh.

Some days feel better than others for my son. On another night last week, he wondered what it would be like to meet other families with kids who have Tourette's. He said, "It would be like a 'Tic Band' with all of us doing our tics on the table." We both burst out in laughter as we tried to imagine the sound. It felt good to laugh together. My son needs to have the freedom to get angry, to grieve, to laugh and to find acceptance in his own time. I think we all do when life gives us more than we can handle.

As a parent, I want to walk this difficult road for him so he does't have to. But I know I can't. That night when I left his room with a heavy heart, I realized that because of my journey through infertility, I can be the mom I need to be to my son.  I don't have to try to fix it. I can let him feel his feelings. Another unexpected gift to come out of the "yuck" of infertility. That was God giving me some perspective.

I wonder if one day my son will see the connection between his journey and my own. Will he realize that I wouldn't have him if I had given birth to a child? What will he see in the years to come that his life has been given because he has Tourette's? Will he be able to see those gifts?

Right now, I am asking God to give me the wisdom to accept the things I can not change and the courage to change the things I can. For me, that usually has a lot to do with changing my attitude or my perspective. And it would was good to be reminded this week that humor is a great place to start.

So enjoy your favorite dessert this week and maybe a good laugh too.

God Box

The best advice I was ever given was to start a God Box for my prayers. At first, I wondered if it would be helpful, but I gravitate toward word pictures to help me grasp spiritual concepts so I was drawn to the idea. The God Box is a tangible picture of learning how to turn over my worries to God and leave them in His hands. 

I've been surprised how the simple act of writing down my concern on piece of paper and putting it in the God Box has transformed how I pray and how I see God. For years, I prayed to God and thought I had let go. But what I was actually doing was telling God how I wanted Him to answer my prayer. Or I was praying for someone or something to change so I could feel better.  But when I write down the prayer and put it in the God Box, I am letting God have it. I am truly letting go. My prayer is simple.  "This is too big for me to figure out on my own. I need Your help.  I'll wait for You to show me what to do."

Don't get me wrong. It's not easy to put some of the big ones in the box and leave them there. But the gift of the God Box is that I'm not trying to figure out the answer anymore. I wait. I live. I listen. Sometimes I have to remind myself, "It's in the God Box. Don't take it out today." Some of the things I put in my God Box are in there for a long time. Months. Maybe years. (I just started in 2011.)  But when I look back months later, I've often discovered that what was once a burden is now gone. My attitude or perspective has changed, and I can just remove it.

This past spring, my son struggled with two boys at school. No matter what he tried, he couldn't get them to stop bothering him. Our school was helping and intervening with the boys, but my son was beginning to feel overwhelmed by the situation. It was often the most difficult on Sunday evening when he was thinking about going to school the next day. I told him about my God Box and how I put problems that are too big for me to handle in it. I told him he could let me know if he wanted to use the God Box for his prayers.

That following morning at breakfast, he said, "Mom, can I put Jeff and Andy (not their real names) in the God Box?" So he wrote down their names on a piece of paper and put it in the box. He loved that the box had a special lock. One side has panels that slide into different positions to lock the box shut. I chose this box because reminds me that my prayers are locked in tight and safe and not to be taken out again!

As my son put the prayer into the box, I found myself thinking, "Okay, God. You got this one? You better show up!" Then I started thinking of ways I might need to explain to my son why God was not answering his prayers right away. Once again, I saw that I think I need to have a back up plan for God.  I too had to put this situation in the box that morning and trust that God could handle it.

When my husband picked up our son from school that day he was beaming. He was surrounded by classmates all trying to stand next to him. We soon found out that his teachers had decided to have a meeting that day with the two classes in my son's grade that included my son and the two boys.  My son was able to share in a safe environment about the teasing and how he felt like he had no friends at recess. Other students also opened up about how they felt the same way as my son. They came up with solutions on how to solve the problem. The teachers initiated letting my son pick a special friend for each recess over the next week. When the teachers asked who would like an opportunity to be my son's special friend, everyone raised their hands and wanted to be chosen. One teacher shared that this meeting was one of the most moving moments that she had experienced in her 30 years as an educator.

You can say it was a coincidence. I say it was God touching my son's life with an answer to his prayer. It was his dewdrop from heaven. And his mom got to enjoy it too. We were both so excited to take out our slips of paper in the God Box that evening. I wish that every slip of paper came out the next day. But that is not the case. But this experience with my son sure made me want to trust God to take care of me ... one day at a time. I could share time and time again when the answer comes in unexpected ways. But for right now, I want to keep those as God's special gifts to me that I keep hidden in my heart.

In this season of my life, I am learning to put my son's diagnosis of Tourette Syndrome into the box. Today I will be writing down, "How to parent a child with Tourette's?" This is what I need to put in my God Box. What about you?  I would encourage you to use the God Box and see what you discover.