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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.

Sunday, November 25, 2012

The Unthankful Thanksgiving

"How was your Thanksgiving?" a friend asked.

"Absolutely awful in the morning, and then better in the afternoon" I answered.

He looked surprised and responded, "Well lets focus on the positive." He pretty quickly started talking to someone else.

His response to me was reasonable and maybe even kind. I didn't blame him at all for trying to keep me positive. I mean, isn't that what "counting your blessings and being thankful" means?

Then I wondered, "How many people have had a really difficult holiday and simply don't feel like they can talk about it-- with anyone?" Being thankful and counting blessings does not mean being fake. Making everything slick. And this week I have realized that even though I've got this blessing identification thing down OK, I shouldn't try to skip around, face aglow, pretending to be the perfectly content mom whom I'm just not. I'm so far from being the mom, the friend, the wife whom I want to be. I'm broken, just like my special needs son and pretty much every human I know. I might as well not pretend to be otherwise. I want to be real.

T, my sensitive child, does not do well with holidays or any big changes in our family schedule. And for some reason, each time his difficult behavior improves after one of these super storms, like this Thanksgiving, I celebrate and move on, forgetting what we have been through. The wounds quickly heal. I create blogs about blessings. I forget to talk about the not-so-perfectly-figured-out stuff.

So there is a blessing-- I have extremely poor memory.

But let me get back to my very honest point-- today I don't feel blessed, and I don't feel thankful. Because when T has a hard time, he creates chaos and suffering for every person in our house. He follows his siblings around the house blocking their way, spitting in their faces, calling them names, pushing them, demanding that they give him their toys. He speaks in high-pitched tones, screaming, quacking, growling, jumping. He taunts our pets. He breaks things around the house. You might be thinking, "Why do you allow this? Discipline him! Send him to his room!" Well, when we try to use any negative consequences when he is in this "hyper aroused state", he has giant tantrums that involve throwing large objects, screaming, hitting, kicking, hyperventilating. They go on for long periods of time. They hurt inside and out-- everyone. In the end, we feel that nothing we do is right. We feel helpless.

When I feel helpless, I'm not nice, I'm not strong, I'm not patient, I'm not positive. I'm just tired. And I hate myself for being so tired. I usually start obsessively cleaning the house. I get angry. I get snappy.

Then I feel shame. Can anyone relate?

I asked Lynn, "what if my blog readers could see how awful I have been acting this morning?" He said something about how maybe it would be good for them to know the whole truth. So here you go...

This year Thanksgiving started at 5AM. Lynn and I jumped out of bed to respond to our burglar alarm claiming that someone was tampering with our family room door. No one was there, but the dogs were barking and the children were up. We tried to go back to sleep, but were roused again by fighting children. My middle boy N was crying. T was spinning around the downstairs screeching and quacking like a duck...Trying to trap N so that he couldn't leave a room, grabbing toys from him. Driving the poor boy crazy.

I rolled out of bed and stumbled down the stairs to the kids' rooms. This is Thanksgiving. I didn't feel thankful yet. It had already been a very hard week.

The morning continued with absolute chaos. T destroyed N's Lego creations, made him scream, stuck his face in my daughters', blocking her from walking, then pushing her when she screamed. He was aggravating the dogs, cats and any living thing in the house. I wanted tea. I had a headache. My feet hurt. I wanted to hide. I wanted to lock him up.

After breaking up another fight, I stumbled into the kitchen to find cereal on the floor, counters, table, you name it. The kids had taken all boxes out of the cabinet and had already eaten. There were dishes all over. I spun through a mental plan-- I had to clean this up before starting to make Thanksgiving dinner. We had friends coming at noon. But I couldn't clean anything because I had to get across the room in time to break up another fight.

I turned the corner to the dining room where I saw our dining room table. It was covered with blankets and sheets and pillow were underneath it. The children had turned it into a fort. I thought it was cute yesterday, even posted a photo on Facebook, but today it looked like a 20 mile high pile of work. Endless work.

I looked under the dining table and found hundreds of paper stars that had been cut out. Dirty dishes.

I told the kids-- no morning video until the dining room fort has been cleaned up. So T started pushing the sheets around, into the kitchen.  He laid on them and rolled around. Quacking. I asked him to stop, and he laughed. I noticed that there were more sets than I had calculated-- about five sets of sheets. Pulled out of my linen closet and draped over the table two days before on our nanny's watch. Now I watched T sweep up dog hair with the sheets and blankets. Even though the cleaning lady came yesterday. I envisioned how many loads of wash this would set me back. I tried to figure out when, when, when I would have time to do that many loads of wash.

I pictured myself trying to get the wash done while getting my car back to the body shop this week, while getting the kids to school and all of their activities. T has been sitting on top of the car and now there is a mysterious leak in the roof. Water has been pouring into our SUV, and the rainy season in Marin has only just begun.

Then I snapped! I started to yell. I commanded my children to clean up the dining room. "I'm sick of it." I groaned. "I am sick of him destroying everything in this house. Hurting everyone...he destroys everything." I started throwing sheets down the stairs. Grabbing toys, maniacally sorting them, throwing things into the sink. Scrubbing dishes. I was freaking out.

Lynn came to the rescue and taxied T down the stairs so that I could catch my breath. Get myself back to kindness, patience and mothering the way I should. I kept cleaning. I breathed.

About an hour later, T had the mother of all tantrums. We can't even remember the trigger. It lasted about an hour. Lynn had to lovingly hold him outdoors, while he screamed, hit, kicked and bit. When it was finally over, T went to his room, hugged me, sweating, breathing hard, barely able to speak. And he fell asleep.

I cried. Then I finished preparing the turkey and I put it in the oven. I felt guilty that I had lost my patience, sad that T was inside-out and looking ill, sorry for my husband who had to wrestle with him for an hour, worried for my other two children who listened to a deafening hour of screaming after they had been aggravated and taunted all morning.

We played holiday music. As the turkey started to roast, it sounded and smelled like the idyllic place to be at that moment. A place to give thanks.

Our friends arrived while T was sleeping, and we were relieved to have peace.  The children played, I cooked and chatted, and I felt like I was part of Thanksgiving. Exchanging thoughts with friends, smiling, hearing the laughter of my children.

As I said earlier, the day ended pretty well. T woke up in a good mood. He played alright with everyone, he ate his food fairly quietly. He demonstrated his biking skills and even inspired one of the guests to learn to ride a bike. He looked like any other child. We appeared to be any other happy family. Much to be thankful for.

The days following Thanksgiving have not gone well. We celebrated my middle son's birthday and we are still technically on "vacation". Sensitive children can take days, even weeks to normalize after any big event or change. So I'm not expecting T to go back to normal for a while. There have been more tantrums and much more unnerving, chaotic behavior. I'm still tired, overwhelmed, worried, sad.

Now that I have finished writing this post, I can say that I'm grateful for the ability to write down my thoughts, for anyone who has read this post, for bikes, friends, blogs, my husband, sisters, my resilient children, my boy who helps me discover my limits, and for the ability to admit when life is just too hard. I'm thankful for a God whom I can go to with my chaos. He can handle me and my children. He can pick up the glasses that fell off my face this week, pull back my hair, and place them back on my head, showing me how to see life with more hope and gratitude.

I pray that tomorrow is a better day. I pray for the ability to see, hear, and receive, in the true center of my being, all of the blessings that are in my life.

------------------------------------------------------------------------------
“Real isn't how you are made,' said the Skin Horse. 'It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.'

'Does it hurt?' asked the Rabbit. 

'Sometimes,' said the Skin Horse, for he was always truthful. 'When you are Real you don't mind being hurt.' 

'Does it happen all at once, like being wound up,' he asked, 'or bit by bit?' 

'It doesn't happen all at once,' said the Skin Horse. 'You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand.” 
― Margery WilliamsThe Velveteen Rabbit

Monday, November 19, 2012

Help! I Think I'm Drowning!



When you're drowning, you don't say 
'I would be incredibly pleased if someone would 
have the foresight to notice me drowning 
and come help me.' 
You just scream.

--John Lennon

Let me do it "MYSELF." How many times do I hear that phrase in a week? My 7, 6 and 4-year-old say it in all sorts of ways, almost every day. And I understand.

I like to do things myself. I always have. This week, I found myself thinking about what drives my need to be independent. Is independence my protection from disappointment or is it a visor from the glaring proof that "people don't really love me?" Absolutely. My need for control? Yes. My need to feel strong and successful? Probably. So I trot off to get things done-- by myself.

And what is the opposite of someone who wants to do it all solo? Someone who is dependent. I hate that word! Someone who needs others. Needy. Don't like that one either. Someone with lots of problems. Ewe...

But truly, I am needy, I am dependent, and I have a lot of problems. That is just the truth. 

Lets face it, I'm pretty sure we all have a lot of problems. And we are all needy, at times. We are all dependent on something or someone. Are we dependent on money, our intelligence, our reputations, our success, our child's success, our own strength, our spouse's...or are we dependent on God? 

Many times in the last seven years, I have felt like I was under water, gasping for air. And I learned that my independence doesn't save me when I'm drowning, and neither does my intelligence, my reputation or my success. I need God. I need help. I haven't quite screamed, but I have come pretty close. And I am grateful that I have found my way to a lifeline-- God who doesn't require my perfection, who gives me help, often through other people. He pulls me up, despite who I am. 

Very early on in motherhood, I learned the hard way that I needed help. It started in my first pregnancy with partial bedrest. I hated myself for having to ask my husband to do things for me while I sat there watching. I never felt that I deserved to sit. I felt useless. I couldn't show him what a beautiful, fit, cheerful pregnant woman I was. I was the opposite of that vision-- I was needy! My husband didn't seem to mind very much, but I felt like I was losing my independence by needing so much of his help. I also had to depend on him for finances because I couldn't work as much as I liked. I felt vulnerable.

Then after T was born, we rushed to the hospital with him, and slept there for weeks on end during his open heart surgery and other complications. And I had to accept help from my very devoted mother-in-law. She took care of our house, our dog, she even packed my clothes for me and brought them to the hospital. She knew every detail of my closet! She packed my underwear and nightgowns. I could not hide a thing. I had to accept her help and rely on her, whether I liked it or not. Given what we were going though at the time, it wasn't that hard. But it was a big step for me. I had to receive love and grace that I could not pay back, and that I felt I did not deserve. I had to let go of doing things all by myself. (And really, who was I fooling, I had never been doing things all by myself anyway...I just wanted to believe that.)  I think God was trying to tell me about grace. 

This need for help has followed (or haunted) me ever since. As soon as T's behavioral troubles started and I had my third child, I found that no matter how many ways I would plan and try to control things, that I could not manage without help. This realization terrified me. I was frightened of being alone with my children. How completely sad and humiliating was that? I was scared because when I was the only adult in the house, T would destroy things, create messes beyond imagination, terrorize a sibling, have tantrums, or he would disappear...The very worst part-- he would completely unnerve me. I felt like a tangle of hot nerves. All while my other children needed me. They were all babies!

I have lived in fear of the days when I will not have help. I still find it humiliating. Because often help (my nanny, or sometimes my husband if he has a late meeting...but he is rarely late) doesn't show up. This week I am looking for a new nanny, and I am not sure that I will find one by the time our current one leaves. She often doesn't show up for work. On those days when I am without help, I buckle up and prepare to accept the challenge. I might even squint. T requires so much attention that I often feel like I'm pumped full of adrenaline, ready for the next leap to grab a permanent marker from his hand, use "just the right words" to calm an episode, pull out a diversion, or sometimes just pick him up (he is very large now) and carry him to a different part of the house... while being kicked and hit... I'm always turned "on." This is not good for our family. So I ask for help. 

I have a nanny,  many therapists for T, a therapist for me, I have my husband (whom I lean on more than I would like), I have my church, I have friends, my family and I have God. I am not doing this parenting thing alone. I cannot take credit. I need people.

Sometimes I hear people say things like, "families need to take care of themselves." Or "have you heard about his dad? No wonder he has so much trouble in school!" And I understand that way of thinking. It is the same insidious need to be strong and independent that I have. To take credit for my own success. But I also now know that child, that mom, that family. They need me and need you. Heck, they are me and you. If we are strong enough to look down at another, then we are strong enough to hold out a hand and pull. To reach for something more beautiful. And if we are strong enough to be in the position to pull someone up, it is only because of our own metamorphosis, empowered by grace and those who have lifted us before. We have been blessed by the people who have helped us, the situations in our life, and by God, to be strong enough to help others. Look back. look closely. ..See what I mean?

It is another blessing, through my toughest child, I guess. Shedding my pride. Accepting help. And this act of receiving help has come in the backdoor of my heart as a gigantic opportunity to redefine my faith. I can openly (on a good day) admit my weaknesses. I can need God and his gifts (the people in my life) rather than try to be God. I can accept that I get a life ridiculously richer than I deserve, which is the nourishment I can pour out onto my children and to other people. I have been given so much. Only when I receive grace with open arms can I share it. I need help, I ask, and so I am so blessed.


Thursday, November 15, 2012

Learning To Shut Up and Listen


"Mommy, look at the hippopotomus in the sky."

"What, sweetie?" I blinked longer than usual, awakened from the mental worry list I was running through while driving her to preschool. I shut up my brain. I looked up. I listened. What a gorgeous sky, filled with soft, shapely clouds.

"Whoa, look at that hippo!" I answered. "How did you find it?"

"It is a baby, Mommy-- the tail is there, the big tummy and head are over there."

"What else do you see up there?" I asked.

And she jabbered on, joyful to have my attention, about hippos. I listened. I could have missed the moment. But a little voice reminded me that living is listening. Listening honors life, people, God.

I have never been a good listener. I am a talker. I often feel embarrassed about how much I talk. I have so many thoughts that I need to get out of my head, and I guess God gave me a lot of ways to communicate those ideas. I paint, write, and I talk, talk, talk. My parents called me "jabber box." I don't think it was a compliment.

But I needed (and still need) to learn about listening. It has not come naturally to me. So in came my special needs boy T. He demanded intense awareness and listening from the beginning.  Not simply listening with my ears, but additional, harder work-- listening with my heart, mind, eyes, my gut.

It started with me watching and listening and thinking, "is that your heart hurting you?" Then later it transformed into the much more subtle questions, "Why can't I get you to the car after preschool without your throwing rocks and bolting into the street? What triggers you to fall apart? Why are you talking incessantly about parking tickets? Why are you clearing your throat again and again? What made you wake up whirling around, destroying the house? Why are you throwing a 30 minute tantrum because I dropped your doll?"

I think parents have a gift the moment that they conceive a child. A line into the heart of another human. They can choose to pick up the receiver at the end of the line, or they can leave it on the hook.

When T was born, I had not made the decision about whether I would go back to work. I loved my career and honestly didn't want to leave it. But I picked up T's line, and I couldn't put it down. I mean, it was pretty clear with the heart surgery and the heavy medications for the first year of life...The signs were screaming, blinking lights, EKG printouts, and chilled toxic drugs-- listen, listen, listen. Be the voice, the megaphone at times, for my child. Get out of myself and be there for my child. I was extremely blessed to have a husband with a job to allow us the option for me to be there. All the time.

There are so many stories of advocating for T, it is hard to choose which one to share in this post. We learned about becoming this fragile infant's voice in the ICU after his heart surgery because, to our disbelief, the doctors, surgeons and nurses never wanted us to leave his side. They taught us that we were holding the line. As his parents, they showed us that we could see and feel things about him that they couldn't. They treated us like we were almost him. We were his voice, for them.

So we left that part of life, the world of life and death and hospitals, with the awareness of our responsibility as parents. Simply seeing and hearing our child wasn't enough-- we needed (and continue to need) to act on his behalf, maybe for the rest of his life. We would later become his voice for doctors, therapists, psychiatrists, teachers, pastors, parents, friends and relatives. They may or may not listen to us, but we would still listen to him, and talk, talk, talk. So I guess I am his mom for a reason.

I have had people tell me that they have a child with SPD, but they keep it a secret. I have had a mom or two advise me that I might want to consider being "less open." I sometimes get sad that there are families and children who feel that they have to hide from being truly known.

Two years later, T's brother whom I will call "N" was just one-year-old when he became very sick with the first fever of his life. While I waited for a call from the on-call nurse at 5AM for advice on Tylenol dosage, N lost consciousness in my arms. I screamed his name over and over, and I shook him (yes, I shook him). He looked blue and dead. He eventually regained consciousness when I took off his clothing, after the nurse called and directed me to do so. Later, the ER doctor told me that it was "just" a febrile seizure from a benign virus. But weeks went by, and he kept getting ill and having seizures. I tried to convince doctors that there was something seriously wrong with my baby. They still told me that he just had a bad virus.

I became N's voice, and I knew something was wrong. I kept going back. I had been blessed with many hours in a pediatric unit of a hospital. I knew. Finally, after more urging, a pediatrician gave him a blood test and we learned that he had "Relapsing Fever." A life-threatening, rare disease from a tick bite, affecting 1 in 25 people yearly in the U.S. He could have died from shock during that first episode of the disease. He also could have died from shock when the pediatrician recklessly gave him the antibiotic without hospital monitoring. He had what is called a JH Reaction, where his blood "went toxic" involving foaming at the mouth and intense screaming and pain. We went to the ER with him and, get this, the ER docs and nurses did not believe us that he even had Relapsing Fever, much less a JH Reaction, until our pediatrician called. I had to scream and cry for my baby. I was his voice.

Looking back on it, I knew that something was very seriously wrong with him. I had to become annoying. I had to trust my gut and just keep pestering the doctors. I think I should have pushed harder. But hide? Heck no!

Do you want to be known? I do. Do you want people to listen to you with their ears, hearts, minds, eyes, and guts? I do. I have God, who knows about every hair on my head, but I still need an authentic community of listeners.

Today I'm not a listener because I am a good listener. I'm a listener (sometimes) because God has given me lots and lots of practice. Those blessings again. It is an honor to listen. I have had the blessing of learning that if I don't listen, and I don't ask the questions "why?" that my children will not be known. And I think that if they are not known, then they are not loved, and they will not be able to serve our world. To share their gifts. And in the very worst cases, which I suppose I am blessed to have experienced-- if I don't listen, my children might not live at all.

But it doesn't stop there. I need to listen to all children, and to all people, and to God. Listen. It is the least that I can do. I need to put down my phone, my Ipad, my laptop. Put my feet on the ground. I need to shut my mouth, my frantic, busy mind, and listen-- with my eyes, my ears, my heart and my gut. There are voices, problems, feelings, calls for help, ideas, clouds and hippos out there that I might miss if I don't slow down, and listen.

If you have read this far, thank you for listening! I am grateful. And if you have thoughts, please give feedback, so that I can listen to you, too...









Tuesday, November 13, 2012

Part II, The Thrashing - Saying Goodbye to Normal



(Continued from "The Thrashing I needed to Let Go")


What is normal? When do you decide that you have arrived at a place in life where you are no longer walking with a large community, but you are on an island, inhabited by few? When your daily struggles are yours only. That you are not normal.

I feel like my husband Lynn and I walked out of that community of "normal parenthood" a long time ago. And painfully to me, people did not understand where I was, and that I had walked off...that I was not where they were. That I mourned the loss of my picture of parenthood. I felt frightened and alone. After the big drama had passed where our son fought for his life, and then the more subtle day-to-day struggles swallowed us up (as they often do today), it seemed like some people turned away from us. It seemed like they believed we could just be good parents and make the trouble go away. Get back to normal. We weren't fun anymore.

Let me back up to when I started to realize that things weren't so normal...

When our son, whom I call "T",  was three-and-a-half weeks old, I drove him to the pediatrician's office for a routine checkup. We were living in New York, at the time. My mom was with me, visiting from Michigan. I thought I knew how the day would go. I had a picture in my head. Normal. So when the pediatrician held that shiny steel disc to his rising chest for a little too long...my body stiffened. And when her brows crumpled, and I heard her calmly say that T's heart was not sounding quite right...well, I started taking careful breaths so that I could process her words and prevent the room from spinning. I thought, "noooooooooooooooooooo, this can NOT happen. Not to us." This wasn't normal.

I called Lynn to meet us at the cardiologist, 30 minutes from where we were. I chattered nervously with my mom as I drove my baby, who had been out of my stomach for such a short time, to an unfamiliar place-- where doctors look at hearts. I hadn't given his heart any thought until now. A miraculous organ, beating constantly, supplying oxygen, blood, and life. What made it work? I had taken it for granted. 

I started to imagine worst case scenarios. I imagined my baby's heart failing, and I imagine losing him. I imagined him going to live with God, somewhere I couldn't see him, love him and care for him. I imagined the ultimate test of faith. Giving my baby back. Would I survive that? I felt deathly sick inside-- parched. But I drove carefully to the cardiologist.

When our minds are as shaken as mine was that day, it is only by grace that we still can drive, push a stroller, talk. I might have looked like any other typical mom walking in to a hospital with a newborn. Maybe someone would ask me my baby's age, "coo" at him, or ask me if I had a quarter for a meter...They wouldn't know that my stomach was tied in a knot, shrunken with fear, panic, uncertainty.

I passed the EXIT sign of the "normal" life of motherhood-- maybe forever. The door swung shut.

I now believe that I had to say goodbye to normal to be able to find my true faith. I needed a thrashing. That false idol, the normal life, had to be peeled away to expose a richness only God could create. No more gauging and planning my family life and that of my child's by what I saw around me. I wasn't really alone like I felt at the time-- I was getting closer to God. I had to find Him first to be able to accept my blessings-- my not normal life.

The news about our baby that day was anything but typical. After a short look at T's heart on an ultrasound, the cardiologist told us that our baby had TAPVR-- a rare congenital heart defect where all of the veins that were supposed to be going to his left atrium were going to his right atrium. He needed open heart surgery immediately. We learned that his blood wasn't getting enough oxygen, but he was surprisingly strong. His heart defect was overlooked at birth because was not been born blue (from lack of oxygen), as most babies are with this condition. By a miracle, his heart had its own design, allowing some of his blood to enter the left atrium from the right through an opening that shouldn't have been there at that point. 

So there was a blessing. He was alive and strong. The fact that his heart was not normal, and had compensated for a serious defect, actually saved him and his organs. It was my first glimpse of how God, through my child, would teach me, the artist, the so-called creative one,  how to really live and view the world differently. This life outside the normal was a blessing.

At Morgan Stanley Children's Hospital, we waited overnight for his surgery. I nestled T in my arms, while trying to sleep on a cot, wishing that the love and warmth I could give him with my body and voice would cure him. Lynn slept beside us. It all seemed unreal. But the next day I stopped breastfeeding to prepare my baby for surgery. As he fasted, I rocked him, hungry and crying for hours. Lynn seemed strong and optimistic, and I was whithering inside. I sang to him, gave him a finger to suck, whispered love words in his ear. I felt so helpless, but I might have appeared strong. I did not feel normal.

The most memorable moment, possibly of my life, was when Lynn and I passed our son to a nurse, cloaked in surgical clothing, in a long, cold hallway. An instant later, the nurse and our baby disappeared into the operating room. He was gone. His first time away from me. This was not my dream of motherhood. I had let my baby go to a place where his tiny heart would be removed and taken apart. His body would be sustained, at a temperature near death, by a heart and lung machine. My own heart felt gone. It had raced into that operating room, releasing the rest of me, floating into a desolate, blank emptiness where I would remain until my baby was back in my arms. I was undone.

But I wasn't alone. I had Lynn, and he was still talking positive. Of course I had God, but that day my faith wasn't very strong... I think I could feel Him holding the string that I was floating from. We also found a whole waiting room of people who appeared to be floating in fear, pain and worry just like me. They had pillows, blankets, tissue, and blank stares. They were waiting for hopeful news about their children. It may have been a lonely place, but there were other inhabitants. They were living in a world that I never knew existed, and it did not seem normal.

Then, over five hours later, our surgeon arrived, smiling. He told us that the surgery was successful, and we could see our baby. I practically ran out of the waiting room, leaving that sad floating place. I felt bad for leaving people behind. I wanted everyone to feel the ground under their feet like I felt. To get news of life, and to feel a return to something normal.

We had been warned that T's condition might scare us. His body would be swollen, he would be unconscious, attached to machines and tied down to a bed. But his life, his rising chest, still with us, did not seem scary to me. He didn't have to look normal. He was ALIVE. He was breathing. I think I cried with joy-- but I can't remember. I can only remember the joy.

I'm going to pause the story now with a thought...

If I could live each moment, seeing the glory that I saw in my little baby's breaths of life that day...What would my life look like?

I think I would get more glimpses of God. Maybe others would too.

If I could see each moment of the day, even if it is an unexpected moment, even if it is not in my control, as an amazing LIFE gift. No tubes, abnormalities, disabilities, defects, disappointments, judgements, surprises could disguise the gift. Then would "normal" matter?

Tonight when I looked at my children I saw hugs, laughter, complaints, frustrations, silliness, messes, procrastination...trouble...every trace of their lives. How many more moments, days, years do I have to see them for who they are? Beautiful as they are. Not in my control. To accept every ounce of them? The clock ticks.

Back to the story-- T's health struggle wasn't over on that day of his surgery. There is more to tell, and many more blessings to share. So I'll continue writing another day...

In the meantime, I pray that through this story, or through other means, you and I might see miraculous things in the "not normal" of life and in the lives around us. Every minute of the day.















Thursday, November 8, 2012

I Just Needed Different Lenses!

Blessings. They are given to me every day whether I can see them, or deserve them, or not-- in my daughter who patters in and wakes me at 5:45 (this morning) saying, "Mommy, I'm hungry"; in my warm kitchen as I stumble around answering three children's questions while brewing my morning tea; in my hope for a better day today; in our family sitting around an oatmeal breakfast making silly jokes; in the car as we exchange thoughts about Halloween candy on the way to school...The word "blessing" has become almost trite. "Blessings to you", "what a blessing", or, need I point out, the name of my blog. I could have been more unique! I could have searched for a different word to express the concept of a blessing. How can I penetrate a world (that includes me) that often doesn't see the blessings in the first place, especially not in places like the the world of special needs?

It dawned on me this week-- another blessing of having a special needs child! I have had to learn to strive to find the GOOD in everything I can. That transformation has been my survival. It is called faith that God is good. (Or some days it is called behavioral therapy.) And it has done wonders for my outlook on life. Part of treating a child who has behavioral challenges is to carefully search for ANYTHING good that he is doing and to promote that behavior-- through words, rewards, points, love. Help him learn what it feels like to do something the right way. Reinforce the feeling.

This concept of searching for the good, putting on rose-tinted glasses, has NOT been intuitive to me. Basically, God has had to chuck his own shade of lenses my way because I have been blind. I have spent my life focusing on what is wrong--with everything. I have sought out the problems to fix. As a graphic designer, my whole career was built around identifying the business or communications problem that I could solve. I LOVE solving problems because it makes me feel successful. Darn ego.

We live in a world, particularly the world of parenting, that views children through a lense that too often sees what is wrong, not right. How many times a day do we tell our kids or our spouses about their shortcomings? How often do we see our own flaws rather than our strengths? It is easy to find errors. We might lecture our kids, give negative consequences, take things away, yell, or we might just give a look that magnifies the wrong...What do we do about the right? Do we say nothing, do we minimize with a simple "good job" or do we stop and think about the person, "wow, look how quietly you are sitting at the table tonight. What nice manners!" or "hey, did I just see you avoiding a fight with your brother by leaving the room? Way to make peace!"

Back when T went to school (he is now homeschooled), we often asked his teachers to share with us what he did well, rather than simply what he did wrong. The wrong part was easy-- impulsive behavior: pushing, speaking out of turn, grabbing toys from others, dominating play, silliness. We tried suggesting all sorts of devices to reinforce the positive-- tickets, checklists, stickers. But his teachers and aides (he had a one-on-one aide at multiple schools) would struggle to find more than two or three positive things to say about him-- in a week. Many days the chart would be empty. And our son noticed. That was the problem. His world frowned at him. Our child, who can't stop smiling, was seeing frowns everywhere. We practically begged for "kudos" to give him from school for something, so that his smile wouldn't go away. Searched for blessings. We watched him lose interest in school, in eating, he stopped sleeping, and he started crying a lot. We watched his smile fading. He was in kindergarten.

So we made the decision to bring him home where he could learn in a "successful" environment. At home he could feel recognized and embraced for his strengths while learning. No more alienation.

We have discovered that our culture effortlessly finds fault with children, parents and people-- especially those who are different. They miss the other stuff! And that stuff is rich with blessings...T whistles or hums with joy as he works, he loves almost everyone, he is a leader, he is creative, athletic, smart, passionate, eager, and he wants to learn all the time. He is a beautiful person. But we have not found a school where he fits.

Like all of us, T has many negative qualities too! Thus the challenges in school and making friends. My husband and my behavioral method at home involves identifying T's (and our other children's) errors clearly, but giving them little attention, a simple warning, sometimes a consequence, when they occur. To gently collaborate with them on ways to improve on those weaknesses, ahead of time. No shame. No lectures. We take responsibility for setting up our kids for success. We talk about individual mistakes, with love... Until of course we have the day when our "buttons are pushed" and we revert to our primitive, "angry-that-you-aren't-who-I-want-you-to-be-and-why-don't-you-respect me" selves. And then we have to start all over again! Retraining our brains. Putting on a different pair of glasses.

Here's the irony: in learning how to "fix" my special needs child, I have had to learn how to STOP trying to fix him and my other children...and to embrace their strengths, prop them up, and love them with all my might. I have had to become an optimist. No more comparisons (those are extremely confusing and often depressing when your child is on a very individualized track.) No more projecting and fearing the future (once I realized that I'm not God, I realized that I could give up the fortune telling act.) No more constantly finding fault in my unusual child, in myself, in my family. I am ashamed to say this, but in the past I might have shown my dismay openly about T's bad behavior just to prove to people that I was not condoning it. To show that I am a good mom.

I still suffer. I cry regularly about T. I still worry,  and I still dream about "the easy life"... But I have much more strength because I can see the daily gifts. I believe I can only see them because God forced me to.

Today my daily challenge is to seek and recognize "the right" all day long in my childrens' difficult, human, behavior. (My husband and I use a point system with prizes to help do this.) To love my children. To model "the right" rather than to lecture to about it. To openly recognize when I'm wrong. If I can help my kids feel what "right" feels like, and to be comfortable admiting that we all mess up, all day long....well, there is the gift.

Lastly, my challenge is to forgive others for all of the ways that we humans, including my children, fall short every day, and to accept that I am also forgiven. Thanks be to God. Only then can I see the blessings.

Gratitude, like faith, is a muscle. The more you use it, the stronger it grows, and the more power you have to use it on your behalf. If you do not practice gratefulness, its benefaction will go unnoticed, and your capacity to draw on its gifts will be diminished. To be grateful is to find blessings in everything, This is the most powerful attitude to adopt, for there are blessings in everything.
Alan Cohen 






Monday, November 5, 2012

Why Are We Racing?



He looked so uncomfortable among the other swimmers splashing around a large buoy in the San Francisco Bay. He loves to swim, but he didn't appear to be loving this. Thankfully he made it back to shore. Out of the frigid water, stumbling through the crowd, came our sensitive boy, who struggles with anxiety and daily adversity. He made his way to me and his bike. I cheered him on. Then I scrubbed him dry and shoved on his shoes. He tried to talk to me about salt water, the seaweed, the scratchy sand on his feet-- he said, "I never want to do that again", and I handed him his bike and pointed him toward the second step of his triathlon.

Does that sounds brutal?

I watched him jump on his bike, then a thought jarred my (disgustingly?) distracted head, "What ARE we doing here? Why did I just push him to hurry? Is this all wrong??" But he was already gone. It was too late.

As I ran toward the bike course that he was now buzzing around, I thought about all of our hours of working to keep daily transitions slow and smooth for him, to provide him with comfort and security, to take off the pressure of "fitting in" by homeschooling him...So why did I forget all of that for a race?  He hates putting on shoes. He hates changing clothing. He hates rapid transitions. Loud noise aggravates him.  And what child likes cold water? Wow-- I had agreed to his participation in a transitional frenzy of discomfort and stimulation-- a triathlon!

We signed T up for a kids triathlon because he is competitive, he has endless energy, he is a great (maybe gifted?) swimmer, biker and runner. It seemed to make sense at the time. This would encourage him. It would build confidence. And the big incentive-- a girl he adores was supposed to be there. But she wasn't there for some reason. And I, the mom, suddenly thought, "what in the world is this race about? Why ARE we here?"

How many times do I rush my kids through activities, places, meals, stories, even cuddles, for no good reason? Where are we rushing? If I slow down, often the answers aren't very impressive. We rush through races to WIN, we rush to commitments and school drop-offs to assure people that we "HAVE IT ALL TOGETHER," or worse, "I'M A GOOD MOM", we rush to bed so that we can hurry up and get rest so that we can rush to the next plan...

When T finished the race, all he wanted to know was whether he had won. "Was I first, was I the best, mom?"

Is that why we rush? Oh God. I answered the way that I think I believe, but apparently had forgotten to practice this day ..."it isn't about winning, honey, it is about the experience. You are so courageous to have done this. It doesn't matter whether you win or not."

I saw the confused look on his face. Did I really think he would believe that? After I had given him absolutely no guidance beforehand regarding a purpose (other than telling him not to worry about winning.) Actually, I didn't even know what I thought about the race, so how could have I prepared him?

I love the documentary "Race To Nowhere" http://www.racetonowhere.com This film warned me early in my children's educational life about the rapid current that can capture parents like me...How we can be sucked in to believing that good parents breed successful kids who win races, play on the elite sports teams, have a gazillion extracurricular interests and activities, earn the A++, get in to the greatest schools, work for the best companies, earn the most money...and then what? Where is God in that race? (the film doesn't talk about God, at least I don't recall, but I need to!) Our kids could go through all of that business without knowing why-- without knowing themselves... Just like my son just did in his triathlon. Without having gratitude.

So what WAS this race all about? I certainly am not saying that triathlons or any other sports competitions are a bad thing. I'm getting ready to run in a half marathon for World Vision in December. I'm excited about it. But I realized I needed to give this race thing some thought.

What are your thoughts?

I now think that I could have framed the triathlon experience differently for myself and for my son. A triathlon, or any race, could be a form of worship-- not of ourselves, but of God's grace. It could be a way of giving thanks for health and life and community. So much has been given to us-- for free. We could give thanks for a heart that works, despite great odds in my son's case. For a body that is strong and coordinated, despite much stress. For the ability to handle chaotic transitions and follow directions-- something I wouldn't have known is a blessing before having this child. For the courage to jump into freezing water, despite having a body that wants warmth and comfort, and might be afraid. For the ability to be alive with a family embracing you, loving you, cheering you on...for being your best.

I realize now that my son's triathlon wasn't about winning because there is no losing when you are running with God. He never lets you go.










Thursday, November 1, 2012

What Makes Happy?

What makes a holiday like Halloween happy for you? Is it the joy in your child's smile? The excitement of planning the costumes? The festivities on Halloween night? The countless parades and pumpkin patch visits before the big day? The wild parties? Is it all of the above? Please, do tell! Comment!

This year what made my Halloween happy was simple-- very little! We visited only one pumpkin patch. We did not go to any parades. We went to one party, but with only our middle child. We decorated our house and carved a couple of pumpkins. For us, there was no drama. We read Halloween books, and as my middle boy said "we spooked up" each room. And I was grateful for the peace.

Halloween for sensitive kids is traditionally a BAD idea that we can't avoid. Take a sensitive, hyperactive kid and pour sugar, chocolate, and food coloring down his throat, then take him out in a scratchy, itchy costume with kids running around screaming, loud, scary noises, lights, costumes. Massive stimulation time! Expect a giant tantrum at the end...could last weeks.

BUT 7 years of experience can go a long way (if you check my face, you would guess 15 years experience). This year my stomach wasn't as tight as before with worry that my sensitive child would: 1) Get lost in the darkness. 2) Run into someone's home and break all of their china. 3) Get hit by a car.

I also didn't dread the sugar overdose like I have in the past (although T did throw up in the street after eating who knows how many pieces of candy.)

Happiness for me is recognizing progress-- remembering where we have come from.

I also didn't feel excluded like I have in recent years. T recently made a couple of new friends who welcomed us to join their trick-or-treating group. They have moms who know about T's challenges-- they appear to enjoy his energy and enthusiasm and they treat him like any other kid. I have learned that the parents and teachers are the ones who I need to first accept T, and then the children will model and follow-- it takes work, attention, and time to show kids how to be inclusive. To get them to reach out...But that is another post!

The biggest hiccup we had on Halloween was ME. Before trick-or-treating, I suddenly became all prickly about getting everyone ready, about my husband coming home later than expected, about feeding everyone healthy meals before the candy started. About being on time to meet Thomas's new friends (what if they left without him?) I couldn't find my costume and there were no umbrellas.

Earlier I read about a mom of sensory kids who prepares for Halloween with a wagon, drinks, food, flashlights, and so much more. I was impressed. And then there was me-- barely able to find my own rain jacket as I crammed bean burritos into my kids' mouths.

When my husband Lynn arrived, T was fighting in the car with his brother over the one small umbrella we managed to find. My daughter was screaming. I glared at Lynn because he forgot to buy umbrellas and was late.

I was hardly counting my blessings. I was feeling strangled by my lack of control. I was missing the gift...T and all of the kids had a calm, good day, up to this point! We were all together.

Minutes later out in the fresh air, I saw the light in T's blue eyes when he greeted his new friends. I saw my precocious little girl stumbling up stairs in her white tiger outfit, scolding anyone who called her a zebra, snatching pieces of candy and saying "trick-or-treat, happy halloween, thank you" all together. I saw my middle, usually quiet boy with a smile bigger than his head, darting around like he had a fire under his feet.

I hugged Lynn and even though I was soaking wet, I didn't need an umbrella. This was worth it. Many parents were standing around, or walking with ease, drinking wine and martinis and socializing (is Marin the only place where parents drink while trick-or-treating?)...they appeared to feel care-free. I tried not to envy them. That world still seems far away... I carefully tracked each child. We had come far to get to this night.

My boy and his struggles, our family's struggles, made clear the blessings of a rainy night-- a friend or two who welcomed him-- a community that connected to all of my kids, even if only for an hour-- laughter. All three little lives, smiling and feeling loved. That made me happy. Thank God!

It was a happy Halloween!

Tuesday, October 30, 2012

The Thrashing I Needed, To Let Go



What AM I in control of?
Lately the concept of control and parenting has been coming up a lot...With my friends, relatives and in conversations with my husband.

I am beginning to think that the fight for control is the barrier that can keep me from loving others well, receiving blessings, and the fight that can distance me from God. And so I understand why many 12 step programs use the prayer, "God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference."  

I have discovered that if I don't stop to reflect daily on where my heart is (for me, that involves prayer), I shove my way around in a distorted world where I believe I am supposed to be in control-- of everything. Not an appealing quality. If I am not mindful, then my ego persuades me to believe that I can control how people perceive my children, who my kids' friends will be, what sports, academics, and arts they'll succeed in, which friends they will make-- and if I get really lost in this mindset, I might even believe that I can control how they will remember their childhood. I can become blind enough to believe I can control how each member of my family feels (including my husband) each moment of the day. And the very worst? I might start to think I can control what everyone else thinks about me and my family. In short, I start to think that I am GOD. Yuck! Arrogance. Wipe it AWAY. I feel ugly even writing this. I am ugly at times. But God forgives and blesses me every day, anyway.

God showed me who is in control very early in my parenting life. Ultimately he gave me the extremely sensitive, unpredictable, gifted child-- my oldest boy who needs structure and control and predictability almost every hour of the day to control his anxiety. A child with a wonderful smile and kind heart who creates chaos all over my home because it makes him feel in control (and me completely out of control.) A child who is completely unpredictable himself and whom NO ONE seems to be able to control (except for Joanie, his wonderful teacher) and except of course, God. Apparently I needed a thrashing. He also gave me two other children, my middle son (now almost 6) and my daughter (4), who are also, like most children, not extremely predictable.

But going back to the beginning of parenthood, I now realize that God grabbed a hold of me before I had a chance to get carried away as the lunatic new mom I was about to become (admittedly, I obviously still am a controlling person, but I can only imagine how much worse off I would be without these early lessons.)
First off, I couldn't get pregnant right away. I was like, "What? I cannot have this baby RIGHT NOW? Not fair! I want a baby NOW!" And it was all I thought about and talked about and cared about for a while. Self centered would describe me. I probably was not very pleasant to be around. Second, after finally getting pregnant, I started having contractions at 21 weeks, ending my running days, which were (and are) my medication for sanity. The contractions also slowed down my work life as a self-employed graphic designer and illustrator, which I thrived on for validation. I started to feel unarmed and vulnerable. NOT in control. My poor husband got to see my worst moods. Finally, my baby was breech, so all of the hours of hypnobirthing preparation for a natural childbirth were wasted. I had to have a C-section, of all things.

Like I said in our March of Dimes talk this week, it turned out that God's plan was more creative and rich and beautiful than mine because He showed me: 1) I needed to slow down to actually think about having this baby. 2) I needed to stop NEEDING to run so fast (still need to slow down today, I know.) 3) I had to stop depending on my career and my success as an artist for my self-esteem.

Seeing my son pulled out of my stomach, screaming with reassuring life, a scrunchy face, brand new to the world, placed in my arms-- OUR baby. Experiencing life erupting in a contrasting blue bright operating room filled strangers-- it blew me and my plans AWAY. I was blinded by the miracle. Life is complex, indescribable, and I got to see where it begins. It didn't matter where we were. Through this birth I could clearly see and feel God's greatness-- even if only for a moment...

Because my child's life was about to be threatened, and there would be pain, suffering, isolation and unpredictability in our lives. This was just the beginning of the letting go.

But I don't want to get into the details of that long story now because I want to keep this entry relatively short, so I don't lose you.

Oh wait, I forgot the best part-- what DO I have control over? I think mostly my own behavior and my own ability to love, reach out, ask for help, ask for forgiveness and to receive. To reach out. I need to ask God for guidance constantly. If I keep my heart, my ears and eyes open, and I SLOW DOWN, then the path is there.

Today I had control over how much attention and kindness I could give my family. I had control over whether I could drink a sip of the blessings that were given to me. Like the tools, inspiration and time to write this entry, to create art with my oldest child, to talk to my sisters on the phone, to enjoy a tower that my little girl made, and to soak up the sunshine as I rode bikes home from school with my middle boy.

I pray that my words are sensible enough to touch a person who needs them. I know that there are many out there who struggle like me. May you have peace recognizing what you cannot control, may you see clearly what you CAN, and have the clarity to receive the blessings you are offered.




(To be continued)

Sunday, October 28, 2012

Gratitude for Those Who Listen

This week? A life changer. I was blessed with hundreds of people shaking my hand, hugging me, and either wanting to know more about our son Thomas and our family,  or people eagerly sharing their own personal stories.  I had entered some world where corporate, sparkly-gown-and-suit-wearing, beautiful people at the Palace Hotel were crying. Masks off-- real people everywhere. My sister Pirrie was there all the way from Charlotte, just for the night, and she was treating me with immense love and support. People were sharing their own suffering. People were giving Lynn and me all kinds of encouragement. People were stepping out of their own lives and imagining my child's life, and the lives of so many other struggling children. They cared. Maybe I was in heaven for a moment.

Thursday night, as the San Francisco March of Dimes Mission family, my husband Lynn and I shared our personal story of Thomas's struggle with around 450 people at a live auction at the Palace Hotel in San Francisco.  We were on a stage with spotlights talking about a story that we often feel no one really has time to hear. It was ironic. I felt a mixture of immeasurable gratitude to God and to the quiet audience, and also embarrassment for taking everyone's time. I worried about boring people...or even scaring them!

And then reality hit me. I had a chance to TELL PEOPLE WHAT THIS IS LIKE. This was a blessing beyond what I dreamed of. What is it like? It is sad, it is hard, exhausting, and it is isolating. But not anymore... I'm telling our story! I'm telling what it feels like to watch my child suffer as an infant, through a complicated open heart surgery. Then suffer some more, due to a life threatening arrhythmia and multiple toxic drugs that he took for 9 months. Then to watch him develop into a beautiful, but complicated and very difficult boy (because of his suffering) who so far doesn't fit most everywhere...and so he still suffers. He is a boy whom most parents and adults observe from a long distance, with curiosity. I have watched my child become isolated, and I have become isolated along with him. I have cried so much for him.

But I haven't just watched...I'm a "doer" and so is my husband! Lynn and I have tried EVERYTHING to "fix" him...psychologists, neurologists, psychiatrists, occupational therapists, homeopaths, biofeedback specialists, "defeat autism now" doctors (even though he doesn't have autism), integrative medical professionals, behavioral pediatricians, social skills therapists and teachers, and now we are working with a neuropsychologist.

What did I want to tell people this week? First, that God, through this struggle, has taught me that we have so little control over life (that includes the life of our children)...because life belongs NOT to us (the parents), but life belongs to God. We can paint that picture of our child's life, of our lives, a thousand times, but God's picture will always look different. And in the end it will look much richer and it will bear more fruit, if we can trust. I have learned that I am not God. I am lost. I need to trust God. I'll continue to do my best to help my son, but the outcome is not up to me.

Second, I pray that we all challenge ourselves to notice the child (and family) who is doesn't fit... Who might be even unappealing to hang out with. That child who isn't easy to be friends with-- the mom who isn't so perfect. Listen to that child's story.  Reach out and include him or her, even if it involves a little work. You could change a life. You could change your life. These children will not heal without the love of their community. These parents won't survive either. And if our hearts don't go out to those who are suffering, our own growth will cease.

The part that I didn't get to share with everyone that night was what it felt like to be up there. I was so anxious before the event. I worried that my message wouldn't get out because of my tears. I worried that I would take too much time. I planned to pretend like I was talking to a friend...but when I stepped up onto the stage, I was overwhelmed with a feeling that I was talking to God. And the words weren't hard at all to find. The bright lights made me feel warm and encouraged me to connect. I felt surrounded my love. (I know it sounds corny, but I am not making this up!) It was nothing like that picture I had painted. It was SO much better and more beautiful. And after our story, as I stood on the stage watching the paddles raising while people donated hundreds, thousands of dollars (over $800k was raised that night)-- I felt like those paddles were the SIGNS that I had been waiting for for so long! I'm NOT on this journey alone. Thank you to all of those people who listened that night. Thank you God. And thank you to anyone who took the time to read this, and who has cared about a child who is not easy to care for.




Sunday, October 21, 2012

Why Write When Life is Chaos?

I'm an artist. I went to Syracuse University and studied Communications Design. I used to make money selling illustration work and graphic design services. Truly I sold my problem solving skills and my creativity. I could take any product or image and create or recreate it...Or I could take an "idea" of a company and change it.

Today I don't make any money (I rely on my husband for income) but use my creativity to solve daily problems and change results, such as, this week: 1) How to prevent my son Thomas from harming a sibling before I wake at 6AM, 2) How to prevent my son Thomas from making a sibling scream in frustration and agony on the way into the car, while I'm trying to go to the bathroom, before school starts, 3) How to prevent my son Thomas from spinning out of control and hurling our new laptop into the fireplace because he didn't win his favorite prize for earning 50 "good behavior" points (before school.) 4) How to prevent my son Thomas from eating all of the sugar food in the house before I get to the kitchen to make my morning tea.... That is NOT an example of a GOOD morning in our house, but it isn't completely abnormal, either.

I guess that you could call me a "constructivemama" Using my problem solving, creative mind, I construct scenarios in my household to ensure that at least all of the children are safe and (relatively) sane, and at best they are all having fun and feeling loved. Some would say our household is crazy, but I'm very aware that we are living out a blessing. To me, a blessing means that God has given me, my husband, and my children this situation, these challenges and these tasks for a reason. Love rules our household. Our life together is a gift that I can choose to receive, or I could be too busy to notice. The coolest things is, that if I acknowledge the gift...if I drink it up...then I can share it! There are so many learning experiences and blessings to share!

Also I recognize that in order to be in the mindset where I can share my blessings, God has given me an instrumental person who has loved and supported me, learned and suffered with me-- I have the best husband whom I NEVER dreamed of. I don't know why I have been given such a person to share my life with. I do not deserve him. But without him I'm quite sure I wouldn't be half as sane and alive as I am today.

I'm starting this blog mostly because I want to share our struggles, which are our blessings... it is hard for me to find a way to explain what I am learning in my somewhat isolated, chaotic and very busy world... Mostly isolated is what I feel...But if our family's struggles with our special needs child can provide comfort and wisdom to another family, then AGAIN we are blessed. The more that I learn about this world of raising and loving a child with special needs, the more that I understand how much sharing, community and simple love matter.

Life is a miracle!