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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!