I live in a creative community that inspires me. With my family and friends, I create...memories.

Thursday, March 29, 2012

A New Creation

I Create Memories was established in early 2011, a New Year's resolution that clearly was not kept!  At the time, I was actively involved in the MOMS Club of East Nashville, TN, which I founded in the spring of 2008 with some extraordinary moms in one of America's greatest urban "small towns."  The MOMS Club has proven a great vehicle for me to do something I love -- celebrate life's big and little moments (as its current President Kelly H recently pointed out to me!)  This beautiful, supportive group was going to feature here in many of the big-time celebrations, while my young'uns could take center stage in the quiet, littler memories.

The plan was to photograph and document the memories that I was creating as a mother and community volunteer, the frequently fulfilling work that I was doing outside the "workplace."  Creating things that are intangible -- events, ideas, moments, or even communities -- is how I have spent much of my free time outside the daily grind of raising young children, and I thought perhaps my endeavors could inspire others, or at the least, the blog could keep our many out-of-town friends up-to-date and archive our fledgling family life.

I plan to still do many of these things, but life is unpredictable.  When the blog was established, my biggest problem was how to fill a long day with two very different kids who couldn't yet play together.  In September 2011, my younger child, Hannah-Bear was diagnosed at age 2 with Congenital Central Hypoventilation Syndrome (CCHS) after spending most of August in the PICU.  Our problems got a whole lot bigger.  In a nutshell, H-Bear is dependent upon a ventilator any time that she is asleep, and will even be so at times of intense stress or illness (a bad cold put her briefly in the PICU again at the end of 2011).  She has some other problems, like temperature disregulation and allergies, that require near-constant monitoring.  I went from reluctant stay-at-home mother to helicoptering nurse-by-necessity rather quickly.

This blog will at times be the blog of a mother with a special-needs child, but more often, I will share things that are familiar to many parents.  This is no mistake.  CCHS has to be one of the weirdest conditions I have ever heard of.  During the waking hours, you would think my child is as healthy as a horse...climbing monkey bars at 18 months, trying to read at not-yet-three.  But, at night, she goes on life support.  Similarly, when she is not sick and her ventilator is serving her well, we carry on as a normal family.  But things can quickly change, and we are suddenly at the mercy of a team of hospital specialists and the goodwill of the family and friends who take care of our son, Matthew-Cat, and the employer that has so far been gracious to allow my husband time off work to care for his baby girl.

My perspective as a parent will never been the same.  Much like the heartbreak my husband and I, Brooklynites at the time, felt after 9/11, our parental innocence has been rent; the loss is profound.  I still face the same pressures and joys as an average parent, but some most people couldn't begin to imagine.

My battle is probably not yours, but we are all struggling to make the best of this life.  I hope this blog will go beyond our relatively unique experience towards that which makes us all put two feet on the ground in the morning and get going.  After all, I am still in the business of making beautiful memories for my children, my family, and my community, and in this service, there is great demand.