I think to myself as I fall into bed with nothing left in my body, not a shred of energy or mental capacity, that this pattern of compete drainage everyday has to stop. Is this how it is suppose to be? To be at the complete end of myself everyday wondering how I will find the strength to put my feet on the ground in the morning. I have committed to decrease, to eliminate and to stop over committing but it still seems endless. The battle that rages within me every day to be all I can be every minute, at every event, with each child and every opportunity to encourage a friend or at work, set me up for complete exhaustion at the closing of the day.

I remind myself of the alternative of regrets, the times of reflection that you cared more about yourself then others around you and the results were devastating. With each reminder you find another breath to keep going. 

I wrestle with wanting to escape to a quiet place in my head that always has a welcome sign and I find myself wanting to run for cover at each new dawn as the sun begins to rise. It's the daunting task, yet blessed-ed gift of responsibility. Responsible for the well being of lost souls, of sad spirits, mad minds and forgotten bodies. Responsible for young adventures, beginning travelers and naive vessels. Will there be enough time and energy to sustain the goals set in front of me? Can I fight a good fight and win the battle over weariness and complacency? 

Sky awakens me from a long night of tossing and turning, the wide eyes of this child sometimes look like a stranger to me, with her ever changing moods and the way she processes and relates to the world. I can tell in a instant by the tone in her voice what kind of day it will be and without taking a breath, I glance to heaven in gratitude that today may have a high chance of success.  

The massive wave that seemed to be over powering me, pulling me back in the under tow trying to drown me in self pity has subsided for a moment and a calmness has flooded over me.

 She sees me today, she hears me today, she needs me today!

These moments are rare and are to be cherished like a sunset that transcends you into it's iridescent color and glory. What can I do to make it last as long as I can, to connect, to teach, to impact, to empower and inspire her? 
I can not waste a moment, she has let me in and I will fight to stay close. I can feel her heart beat and I know it will well with her. 

There is the answer, once again in the middle of the muck and the grind of the usual that YES it is suppose to be like this. I am meant to be at the end of ME each day, so I can be filled up and renewed every waking morning with the power and strength to sustain the battle of life. Would I want it any other way? NAhhhhhhhhhh


Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.2 Corinthians 4:16



 

Flap Less Soar More!

 
I felt the tube slip away from me as the waves began tugging at my legs, pulling me under. Then a sharp pain as my shin slammed into the rocks below.  I reached to stop the blood running down my leg but the current was too strong and it swept me into the air. 

At that moment, I realized the only landing place for my body was the rocks below and this could potentially be very bad news! 

Moments like this is when my mind begins to self reflect and then immediately plan for the worse case scenario. I am breathless from the possibilities that EVERYTHING could be different in a blink of an eye.  

I have had many moments this summer that I felt this same way, as if the waves of life and caring for others was pulling me under. I have lost my footing and fallen face down into the rapids of despair. 

Disappointed in all the things I couldn't finish, or the appointments I missed or the friends I had not connected with or the house that was now a play fort.  The daughter I worry about constantly, the marriage that lacks spark, the job I thought I would have by now, and the bank account that seems to be dwindling into single digits.

I land, surprisingly, safe into the lap of a young gentleman that is sitting comfortably in the middle of his tube which now floats us both down the remainder of the river to safety. My family anxiously awaits my arrival but then the moment we realize what happen the hysterical laughter of the journey of where I was and what had happen allowed me to finally LET GO! 

First I let go of my cell phone that was now at the bottom of the river. Realizing later that it needed to be there for me to be FREE of the bondage it had on me. Then the letting go of all the data saved on my mini computer including work contacts, pictures (for moms that's the hardest), the notes and all the things we think we have to have stored on our precious addictive little device. More importantly letting go of the control and perfectionism of trying to get it all in and making it all work together in order to feel like we had a successful summer.

 

 
The freedom I felt as I climbed out of the water and onto the rocks limping in pain yes, but full of fresh perspective that this last week of summer was going to be the best week of summer because I just learned something that I already knew but had not lived out, TOTAL TRUST!  

I thought partial trust was enough or the 20-80% law would be good enough but was not sure how to  obtain total trust. I had wrestled with what to trust in and that battle was over for me now but trusting my life, my kids, my career, my marriage, my body, my money, my everything has not been easy and I didn't realize how tight my fist had been around some areas. Letting go meant releasing my grip on ALL of these things.

The summer started with THE list of emotional, spiritual and physical areas I wanted to work on this summer with activities in each areas to help build independence and virtues in my kids. I had the groupons, coupons, chalk calender, little sticky notes, highlighted magazines and a plan for resting, growing and serving. This is better than no plan I thought and I was not being a tyrant about any of the above areas plus I did have realistic expectations so I felt like this was going to be a GREAT summer. 

I stayed steady on the course not working much, spending day after day believing in my plan and it did help my daughter learn more math, she made it to some therapy sessions and my son was able to have quality time with family and friends plus I had a weekend alone with my other half. So..... If my goals were being met, why was I still searching for more, feeling inadequate that it wasn't enough and judging myself against what could or should be?

Nine days and counting without my trusted, friendly, always ready to please cell phone by my side and the storm in my head has stopped. The wind has quit howling its lies that I need to keep going, do more, try harder and be better at this and that. The compass that always changes directions when everyone else goes in a different direction has now been pointing the same place consistently enough for me to feel confident in my course. 

Now, totally trusting that when the waves come to sweep me off my feet again instead of gripping for control, trusting and letting go may be the better way to live. Losing my phone meant gaining a week of time spent connecting without excessive scheduling, constant texting and solving problems.  This summer ended with less flapping my wings and more soaring. 

Birds use their strong breast muscles to flap their wings and give them the thrust to move through the air and fly, but they also sustain flight for long periods without flapping their wings. They take advantage of updrafts that allows them to remain aloft and to be highly maneuverable at slow speeds.

 Lesson learned: Flap Less ..... Soar More! 

April is Autism Awarenss month but how can I (little me) create awareness

When I say little me, I am speaking physically, mentally and emotionally. The thought of someone under 5 feet tall, emotionally unstable and mentally, well not a PhD candidate. I often wonder, "How do little people make a BIG difference"? History is full of small people making loud noises, huge changes and significant strides into making our world a better place.  

Awareness= knowledge or perception of a situation or fact. 

OK! So.... if all I have to do is have knowledge to bring awareness then even a little person can do that, so my post is about passing on the knowledge I have learned from raising a brilliantly feisty and awesomely stern young women with Aspergers (well now called High Functioning Autism or whatever other diagnosis the current doctors wants to attach to her).

What we tend to focus on most, is ALL the stuff we read and hear about what she can not do or the issues she has to deal with, for example: pick up on social cues, handle change, eccentric behavior, reciprocity, gross motor coordination and controlling emotions. 

When I look at adults and evaluate peoples movement and reactions, I realize that we all have navigated through life figuring out what we are good at, what makes sense, and where we fit in. If we try something that doesn't feel right we tend to move in another direction. We eventually end up as an adult that has leaned into our positive traits and found others that have the same or similar interest. Some times our path is directed because so many people tell us we can't do something or remind us of our failures.  

 

The same is true with any child that struggles in different areas of life, they begin to figure things out and migrate toward the areas that give positive feedback. As a parent, this makes my job a little clearer, I am not trying to force my child to overcome obstacles by trying a little harder, go to more and more therapy to fix something or constantly remind my child of what they can not do.  

My job is to provide a pathway for exploration so they can discover WHO they CAN be.  

Our controlled environment has its daily challenges, like every other parent we have found what works best for her today and welcome changes as needed. Opening our mind to the revolving door that constantly swings with her mood and mustering up all the patience to be damage control task force 24/7.  Giving up the unrealistic dreams that so many times we impose on our kids placing them in a box with boundaries of what we think they should be or do. The would of, should of, could of- syndrome of parenting no-no's. 

Filling in learning gaps with endless options makes a dim future seem bright and exciting and it may be as simple as turning over the confusing picture to find the imprint of the crayon made an abstract masterpiece.  There are two sides of a coin and of a child- the one we choose to see and the one the world sees or maybe even they see in themselves. If we ourselves can not see the other side it will be hard for them to find a path right for them. If we all ended up cheerleaders and quarterbacks the world would be missing the magical sound of the band. 

 Let them all play the sound of their own tune loudly, from the mismatched clothes that don't really fit right or the ear muffs that fade out the sound to help her cope, or the sweet way she hugs not to feel the discomfort of touching. Noticing and enjoying the sparkle in her eyes when the reptile collection adds a new member or a friend announces they love lizards! The very thoughtful notes that take my breath away explaining what she couldn't verbalize. The hat she wears every night to sleep because she says it helps her mind rest.  
The pink sunglasses sometimes see blue, OH how I love BLUE!

Pain + Growth = Intimacy with God

The walls closed in, like sand being poured over me, as I was being buried alive! The elevator door shut and I stood alone in my panic, I felt my breath begin to shallow and I slide slowly down the wall to my knees.  The realization of leaving my angel in THAT place was incomprehensible and the faint sound of her cries could still be heard. 

I have no idea how I made it down from the 5th floor of the hospital, to find myself at 2am walking down the sidewalk looking for a familiar face to give me a ride home.

The apprehensive smile looking at me from the window of her car reminded me that this was my reality. I wanted to run back inside and begin screaming "I want my baby back".  I was missing something, I felt so empty without her but on the other hand I knew deep inside I needed to let go tonight, trust and get some rest in order to face the new morning that would awaken me in only a few hours. 

The silence between us on the way home said what two moms didn't need to say, it's unnatural to leave your child in the hospital but it is instinctual for a mother to seek help for the needs she can not meet. Instinct wins over emotion this time and restoration is needed to survive the unknowns. 

The new dawn brought more questions and uncertainties, my body moved through the motions as if I was a puppet, being controlled by the man upstairs.  He gently moved my arms and legs in sync to help me take one step in front of the other, he gently pulled the strings up to place a smile on my face at work and he helped open my tired eyes to drive back to the hospital.

The gown wrapped several times around her as I heard her faint voice "MOMMYYY", oh sweet Jesus..... I wanted to run across the floor and wisp her up into my arms. How did we get here? Were the police flashing lights and ambulance ride the night before a nightmare, or is this now part of her survival story? 

 

She had a calm to her that I had not seen in awhile and it put my soul at rest. Where would this new road take us? The next step of our lives is not always visible or accessible, its just that leap of faith transcending darkness into light. 

"Mom, I really miss Skyler".

Traveling back and forth day after day to the hospital learning, talking, and wondering how this new direction would effect our life and the life of my son. 



He has been so courageous! The sound of his plea the night before "Mom please stay with me, she scares me sometimes". We both know she loves us more than she is capable of expressing and her intense emotions launch her into places she doesn't want to go but the truth be told I am scared too and in our fear we have reached out for help. 

Fear, a powerful emotion, can help us take action!

 

The connection between what I am learning to help my daughter has also helped me begin a new journey. 

The steps for helping kids that are on the cliff of disaster is the same road to help anyone seeking intimacy with God. I listened to the counselors talk about how to connect with different kinds of feeling, identifying the why's of reactions and how to express yourself in hard situations. They taught her a self care plan of sitting quietly EVERY hour for 9 minutes to tap into your feelings.  Spending quality time with oneself to build a constructive pattern and with that consistency it can then be used in time of crisis.

WOO! It hit me..... if I would stop for 9 minutes every hour and spend time reading the word of God, praying or listening to his direction for my life, I would also be able to have a strong foundation in time of need. This is when you realize that in the midst of pain comes a parallel of growth and change. Healing and hurting on separate sides of the railroad track moving in the same direction toward a final destination, wisdom.  

We still have an enormous challenge in front of us and I struggle daily with the burden of caring and making the right decisions for her but with a foundation built on solid ground I can withstand the storm. 

The day she came home!!!!!

It is amazing to re-read this almost exact experience  
Déjà vu! 

(Read October 22, 2008 Blog Entry) 

Making room for different can open a window to WONDERFUL!

She is only 9 years old..... nine years of living a life that has been surrounded by love, commitment and compassion. It is hard to comprehend the grey areas that turn to black for her when nothing visible is the cause. The darkness that grows in her is more than circumstantial and is exasperated by uncontrollable environmental factors.  What is a mother to do when she can NOT control her daughter's environment and she fears that the darkness will creep in, take a hold and never let go? How can I stop the waves of her struggles from pulling her under?

The memories of my own life are constant reminders of how real depression and anger can be, how debilitating and exhausting the fight is to keep looking up. What tools can be provided and taught to manage the cracks and what kind of supernatural glue can keep the pieces from breaking apart? 

Her voice became a faint whisper as I leaned in across the bed to hear,  "Mom I'm scared I may hurt myself", this unsure, helpless statement made my fear a reality.  

The darkness is trying to defeat her but it will have to go through me first. Immediate plan of action-fall to knees in humble, helpless prayer. Releasing what I have no power to control and letting go again and again of the idealism that a perfect life can fix a imperfect brain-that all the medication, therapists and doctors in the world may fail but the truth I grasp onto with all my might, is embedded in the one who will never fail.

If she leaves this world sooner then my time line for her,  I will know I have fought a damn good fight and I am reassured she will await my arrival in the glory of God's loving arms. Until then, the battle we rage is different then physical disability but similar in the challenge of the unknown. Mental health is the hidden disability that plagues so many; some have found a mask to wear that keeps them safe, others are labeled and others hide in isolation. The world judges from the outside and when the disability is not seen at first glance we make no room for error, weird or different. 

Laughter is a rare treat not be taken for granted, peace is a luxury not to be exploited, joy is the thing we search our whole life for and acceptance is the one thing that makes the heart keep searching. Making room for different can open a window to WONDERFUL!