The Other Side of my Equation...

When I started this blog a few years ago, it was really a way for me to process.  People might find it confusing...I am a math teacher, yet I love to write and actually find it therapeutic. Sometimes my thoughts are too big inside my head and I don't know what to do or say, so I write. The daughter of an English teacher, reading and writing was a part of my life.

I was never one to write in a diary, although I was envious of those who did. I always admired that some could go back in the history of their thoughts and see where they were during different times of their life. Reliving their history one page at a time. This blog has become that diary, of sorts, with the ability to go back and see where I was and where I am.

I look back on these last few years, my journey, both the one with the Littlest and the ones without him.  So much has happened...it is almost overwhelming to read over it all, pulling the scabs off the wounds and re-experiencing the pain. Some of the moments over the last few years have been joyous...celebrations and accomplishments, while others have been heart wrenching...losses of children, family, and friends. Living in a world where there are too many small caskets, too many broken hearts, too much pain. Hearing friends cry and agonize over a loss so deep that there are no words to fill the hole. Tears that begin to heal the wounds, the cavernous mouth of pain or anger. The helplessness, the worry, the sorrow. Wounds that never truly heal, but rather the raw edges blur, the tears washing over the wounds, slowly dulling the pain. This part of our journey will never be over...friends will buy tiny caskets to bury those they love. The community will rally and love will surround all who have lost.

My life as a teacher has been one of hills and valleys. Changes over the last few years, both personally and professionally have driven me to be stronger, as a person, as a teacher. I have had to swallow my pride in areas where I've made mistakes and try to make amends to those I have wronged. I am trying to move into a direction that is positive and powerful...looking at the past and learning from it rather than being bound by it. I am fueled by a passion that almost is overwhelming. Maybe it is a desire to make up for the areas I can't control, those with the Littlest...maybe it is my attempt to control something in my life, something that I can look at and say, 'I did that." After all these years I almost feel compelled to move forward, as if I can't control the forces that push me forward. The plate is full, the glass overflowing, but my mind won't stop and the drive is so intense that it overwhelms my soul.

There have been many blog posts about the Littlest, the worries and struggles. I try to maintain a positive attitude, not only for myself but others as well. It can be difficult...some feel pity, not in the "I feel so sad for you" way, but in a way that is stronger than sympathy. Our life, for those on the outside, is something that many don't understand. It is complicated, full of medical terms, sometimes crazy. It is the life we lead, the one we were given. It is a good one...in so many ways a gift. I mourn the loss of what could have been. With the latest set-back, I am encouraged by the progress made, while always remembering where we were just a few short months ago. A simple task like driving his chair, now a monumental exercise that requires deep concentration. It is victory and defeat all rolled into one struggling move.

Next week I am attending the MTM-CNM Family Conference in Chicago, a gathering of families whose children are affected by this disease. These families are my village, the place where I find others who walk a similar path. Ironically, I am a leader in this community, one who's son is older...at thirteen one is considered older, and with that age comes wisdom for other parents. I have the opportunity to talk to others, encouraging them to move forward, to see a full life with their child. Years ago, this encouragement was not available. The outlook seemed bleak. No treatment or cure was even near the horizon, yet now, there is hope...a potential for drug trials.

I know that my sweetest boy has far to go in this area, but the village has surrounded me in our time of need, just as they have with families before us. This is what community is, a place to turn when you can't lift yourself up one more time. This community is my life line...a place to go when my heart needs solace. That is what this entire journey is about...discovering the other side of my equation...what is there for me on the flip side. It is both a mathematical and emotional journey. One that is linear and random...a combination of order and chaos. That is what this life is...a juxtaposition of joy and sorrow, inner peace in the midst of the storm.

My equation is one that is in the making...a life or creation, a life worth living.





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