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Friday, December 28, 2012

Goodbye Christmas

Christmas is over. We made it. I can't believe that I only feel relief. I can say, maybe apologetically, that there are no "post holiday blues" for me.

Though our family's celebration is meant to be about the birth of a savior, Jesus Christ, our experience is often far from Christ-like. We are busy shoppers, rushing from place to place, shoving each other, glued to the internet, crowded in parking lots with horns blaring, rather than a humble donkey plodding along with a pregnant woman and exhausted, devoted father. We are glitter, electric lights, music, sweet, excessive food, parties, alcohol, rather than a chilly dimly lit stable (or by some accounts a cave) where a baby was born beneath a starlit sky. A baby whose life and death and life again are about sacrifice, hope and giving. We throw gifts to as many people as we can remember to get them to. They are meant to be thoughtful, but do we have time to think? We dress up, we go to church, we worship Christ. We try to remember what this is all about. And then the most important part-- we overwhelm our children with a mind-blowing abundance of stuff on December 25th.

Then we watch them self-destruct. In my children's case, we actually see the face of greed, competition, waste, envy. All in one pretty package. Can you relate?

For the past 5 years, I have worked with our county's local family emergency homeless shelter as a volunteer. I have learned that sadly, our community also overwhelms the shelters with gifts that are not needed-- and this only happens at Christmastime. The shelter employees' jobs become twice as hard, just trying to sift through the junk that is dropped off on their door step. They have no storage, so they spend precious time figuring out what to do with all the "gifts," rather than caring for the true needs of families in crisis. Even more ironically, this shelter will close in February because our county is not able to support their existence throughout the year. But the gifts still pile up. That is another blog...

Is it a wonder why special needs kids, or any of us for that matter, struggle during the holidays?

A few years ago, after watching T (our highly sensitive, anxious son) almost pass-out from the agitation and over-stimulation at age four on Christmas day,  my husband and I decided that we needed to "redesign" Christmas. Could our celebration be different? Could we stop purposely overwhelming our children with gifts and excessive-- everything? Maybe Christmas did not need to be about feeling overwhelmed. How did it get to be this way, anyway? And there, once again, is the blessing of our special needs child. It was simple. Slow down. Think for ourselves. Do things differently. Hey, I'm a designer, why did it take me four years to figure that out?

So for a couple of years we ran off to Tahoe for Christmas, bringing only one gift for each child and stocking stuffers. We gradually decorated a tree with all ornaments that we made while gathering at our getaway. We spent the week simply reading stories, skiing, playing games. My sister Alison and her family came to visit, and last year my parents also joined us. But this year was different. We couldn't get away for Christmas because of my husband's work schedule. My family wasn't able to be here. We went to Tahoe for the week before Christmas, only to have a frightening car accident and to find that this year Tahoe seems to aggravate T-- a lot. We couldn't even consider the idea of flying to be with family because traveling is the absolute worst thing for T's anxiety. And actually even having visitors transition into our lives and then back out again is quite hard on him, and therefore us. It is almost as if we need to create a cocoon around ourselves just to survive the season.

After reading this far, have you already thought, "bah humbug?" Maybe I can redeem myself, a little. I recognize the value in most every aspect of the tradition of Christmas. Gift giving, baking, parties, wine, food are all  celebration of community, family, love. And sometimes they are also a celebration of God's great abundance and the greatest gift -- his son, Jesus Christ. Lights, music and even shopping can be beautiful, and they can tell of hope and gratitude. Personally, when I have time (which is seldom these days), I love it all! As a child, I warmly remember sliding through the snow of my Midwestern village, from shop to shop excited to buy the next gift. I remember the anticipation of watching someone open a present that I had wrapped for them and purchased with my own money. Or better yet, a handmade gift. I still love watching people open presents.

But I now see the other side of what Christmas can do to me-- how I can become a mom with a purpose that is lopsided. Trying too hard to please-- everyone. Maybe trying to impress. Ironically, I can even overdo attempting to "do things differently" and I try a little too hard to "keep things simple!" I forget that to me, the holiday is about a savior. I am not the savior. And the gifts, decorations and parties are certainly not going to save me or anyone else. So, for the sake of my family, I need to slow down, breathe, and realign. I need to see how my actions and my attitude affect my children, especially my sensitive child. I need to change.

So how did this year go? Well, honestly, not as well as I hoped. Because T's behavior has been particularly difficult lately, and because of the car accident, I was too stressed. My mind was busy making phone calls, and researching help-- help for T, help for my family, help for my car. I didn't have the mental space to figure out how to simplify, and make things special. Some of the sweet traditions that we have created in the past few years, we had to forego. Frankly because we were too unorganized. We were flailing.  We barely had time to read the Christmas story to our kids more than one or two times. One of our manger scenes (my favorite) never made it out of the closet. And because T "accidentally" saw some gifts ahead of time (he has an uncanny way of being everywhere), I actually bought more than one gift per child this year to save Santa Claus from embarrassment.

Our kids did not behave very well on Christmas Eve or Christmas day. Especially not T. I decided not to cook, so we went out for dinner. We were late to church. We had no extended family in town, and I missed them all, painfully. I did not make our usual Christmas bread on Christmas Eve either because I was too tired and was putting out fires between T and the other kids. I hobbled along, trying to look joyful.

And to top it all off, I got an email on Christmas Eve from our new "special needs expert nanny", who was to start on the Thursday after Christmas. She impersonally informed me that she had suddenly taken another job. Alone in my car in our driveway, I cried, and cried and cried after reading this news (did I think that she was the savior?) I could barely lift my head. It was then that I realized how much I am in need. Hey, do I have special needs?

Maybe that is what Christmas is about-- being in need. And maybe that is why the presents, somewhere along the line, got so out of hand. We all need a lot, but the presents just don't do the trick. We need more. I know that I do. So along comes the birth of a savior...

My husband described our Christmas to his dad over the phone as "the best we could have hoped for." Thank God for his optimism. And he was right. There were many blessings.... Candles held at church, carols sung, stories told, big smiles, exclamations of joy, a tree lit, a family of five, alive (didn't I say that in the last post?) An amazing husband. Love. Phone calls from family. There were big blessings. A savior. Needs met.

I am grateful that we made it through Christmas, and maybe even for the lessons of this complex holiday.  I pray that I find more help for T and more ways to slow down, so that my mind will have the space and my body the energy to be a more thoughtful mom, wife, daughter, sister, friend and neighbor. I am thankful for the birth of a savior during a time when I clearly am in need.

“The Christmas presents once opened are Not So Much Fun as they were while we were in the process of examining, lifting, shaking, thinking about, and opening them. Three hundred sixty-five days later, we try again and find that the same thing has happened. Each time the goal is reached, it becomes Not So Much Fun, and we're off to reach the next one, then the next one, then the next.

That doesn't mean that the goals we have don't count. They do, mostly because they cause us to go through the process and it's the process that makes us wise, happy, or whatever. If we do things in the wrong sort of way, it makes us miserable, angry, confused, and things like that. The goal has to be right for us, and it has to be beneficial, in order to ensure a beneficial process. But aside from that, it's really the process that's important.” 

― Benjamin HoffThe Tao of Pooh

Friday, December 21, 2012

Hope In The Midst of Hopelessness

“To love means loving the unlovable. To forgive means pardoning the unpardonable. Faith means believing the unbelievable. Hope means hoping when everything seems hopeless.” - G. K. Chesterton

Tears streamed down my face as I drove my Suburban up the dark hilly, snow-dusted driveway at our Tahoe rental home. I listened to an eloquent prayer on the radio written for the victims of the Newtown, CT shooting. It was my first time alone on our vacation, and I felt weary, maybe even depressed. It had been a hard week, full of some of the biggest challenges with T that I have seen. And then there was the news of the Sandy Hook shooting. The prayer described the devastation of losing a child, and went on to describe the lost children living in the unending loving embrace of God, bathed in light and love. A beautiful picture. But then I imagined my children leaving me in such a horrific way, and my stomach rolled. I leaned over my steering wheel as I crept up the dark driveway of our rental, wet snow hitting my windshield, teary eyes. I rounded a second hairpin curve, started up the final hill. My wheels spun. 

The prayer continued on the radio. I felt a need to hug my children.

"No need to take a risk," I thought. "Nothing to prove." So I stopped attempting to go up the hill. I turned my wheels in the direction that appeared safest, although there were cliffs on both sides. The car came to a rest. I turned off the engine, removing the key, the prayer on the radio cut short. I opened the door,  thinking that Lynn and I would salt the driveway in the morning, and the car would get up the hill then. No reason to takes chances. 

My left foot secured the emergency brake and then reached for cold ground. Halfway out of the car, I took my right foot off of the brake. The car started moving backward. I jerked back inside, re-checking the emergency brake, but saw that it was engaged. Confused, I mentally spun the fact that the engine was off and the car was in park, but still moving! It was gaining momentum, backward toward a cliff. I pressed urgently on the brake, and felt no response...the car was not stopping. 

Leaping from the car, I looked over my shoulder to see headlights disappearing off of the cliff and out of sight. I heard a sickening crunch sound. I screamed and screamed and screamed with a deep terror I cannot remember ever expressing. But the dark sky, glittery stars, and cold snow did not respond. More screaming sounds were erupting and bellowing from me, as I ran up the slippery driveway to the front door of our warmly lit rental home. 

I half expected to hear an explosion from the car below. But there was only deep, wintry silence. No one could hear me. The door was locked. I pounded, and slammed my body against the door, yelling some more. I felt locked out of my family's warmth and security. I felt alone. 

Then I remembered God. 

"Help". I wailed to the dark sky and big wooden door, "Thank you thank you thank you that my children were not with me. Thank youuuuuuu God." I screamed some more. I could not stop. 

I pounded with my whole body.Then the door cracked open and there were my 6-year-old boy (I call N) and my 4-year-old girl (I call A), both in underwear, staring up at me. Sparkly, confused eyes. Kind of like the stars. I sank to my knees coughing out love words for them. This love felt so big, overwhelming, and so distressing at the same time. I was shaking, wet and disturbing to look at. They tugged off my boots, and covered me with A's soft pink blanket. My children have never seen me truly crying, at least not much more than a few tears, much less incoherent and traumatized. 

Lynn had been bathing the children and finally emerged with T whom he had to get out of the bath before coming to the door. After seeing that I was safe, he went to find that the car thankfully had not rolled all the way down the cliff, into the street. It had hit a tree, which had kept it upright, spinning around and landing in a shallow ditch. Only half of the car was damaged.

This story may not sound like it is about being a special needs mom, or about blessings, but it is not at all separate from my life as a special needs parent. Nothing seems to be anymore. You see, I was so distressed anyway that evening. We had not left the house much more than an hour or two on our "vacation" for two days because Thomas had been in such emotionally difficult condition. We felt he was in mental pain. He could barely talk, and when he did, it was not kind. He was extremely agitated, defiant, didn't want to go anywhere, and he almost seemed to have become a different person. Because of his pain and difficult behavior, our whole family was suffering. We were miserable. Meanwhile, I was reading news clips about a child raised to age twenty, only to express his pain by taking countless, precious lives. Probably a child who was depressed and mentally ill. Likely a mom who struggled in many of the ways that I struggle. She may have felt alone and lost and out of control. I was feeling lost all week. I was feeling that I had very little control.

Looking back on it, "no control" looks like a giant SUV in "Park" with its engine turned off, sliding off of a cliff. "No control" looks like a car that happened to not have my children in it. This accident about summarized the size of the grief, fear and pain that I was already feeling-- and how little control I have over much of what happens around me. How little control we all have. God is so much bigger than the dark, starry, silent sky. He can hold a child in his embrace for eternity. He can stop a car from rolling. Keep my children home while I grocery shop. He can save me from despair.

We are all powerless, to a degree. But wait. There is something we can do. We can hope. We can love our children better. We can dance, laugh, sing carols and rejoice in life. We can celebrate when kids have good days, or good hours, or even just a good moment. We can reach out, and show interest in every single child whom we encounter. Love them. 

My middle son asked me the other night why he needs to love the child who is mean to him at school. I thought for a moment and then explained that God does not ask us to love only those who are easy to love-- that is easy! God wants us to love those who are the hardest to love. They need us the very, very most. My boy asked, "but what if the person is a bad guy, mom?" and I paused, then answered, "We are all bad guys, N. But any minute of any and every day we can make a choice to be different, to do something good. We can always be forgiven and we can always decide to love.

The blessing? I might not really get this unconditional love concept like I do today, if I were not a mom with a (very challenging) boy with special needs. I might not get why I should get out of the car rather than trying to get up a steep icy hill. Why I should jump. I might not get how fragile and precious life is. What gifts my boy's life has given me. He is not "a bad guy." He is suffering. He has had a life of suffering. Open heart surgery, arrhythmia, but the hardest part is that he does not fit here. Because of his suffering. His stress. Every day is hard for him. 

And what perpetuates the suffering for guys like my boy are the many adults who treat him without love. Annoyance. Displeasure. Irritation. Or with a "love" that is expectant of something that he can't deliver-- yet.  A love, withheld. Adults in roles that would surprise you-- where you would expect more. Adults who want some behavior or attitude from my child that he just can't deliver -- yet. I have also seen those special adults who authentically know and love T, unconditionally. When I see that interaction, I feel like I'm seeing the face of God. 

If you have read this far, and you know a "bad guy" or a child who is hurting-- I pray that you get to know him or her better. Just love, unconditionally. You will be blessed if you do. You will find gifts that you didn't know you could possess.

I am blessed to have hope, in the midst of hopelessness. I believe that one day I will celebrate with my child and our family. There will be friends. There will be peace. If not here, then in heaven. It will be warm. And my special needs boy will not suffer any longer.