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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!