Avery Grace

Avery Grace

Sunday, July 4, 2010

The daily grind

I find myself counting down the days until the end of summer. I never want to wish time away, but the heat, the end of the pregnancy, the lack of structure and long days seem to be dragging on and on. I most certainly didn't pick the ideal place to live given that I prefer a cooler climate, but in many ways Texas has become home to me, even though I still miss Atlanta from time to time.

Home is no longer where I come from, but now is who I have become. The life Bryan and I have created is precious, and though in many ways this life is not what we would have chosen or expected, we cherish it nonetheless, and are trying like hell to make the most of it.

Since the time my life has been forever altered by my beautiful daughter's disease and disability, I have been working really hard to focus more on the "big picture" and not the daily struggles. I write about the big picture all the time. When I speak of gratitude, abundance, perspective, and even grace... I am able to see beyond the daily grind, passing frustrations, moments of overwhelming sadness and helplessness, and see the beauty in the life I lead. The beauty in disability. The beauty in relationships, and the joy resulting from heartache. This focus has enabled me to cope, and find meaning and purpose... but it doesn't mean I don't still lose it from time to time.

Afterall, I spent 30 year or so projecting my future and living for tomorrow... so learning to live for today, not borrow trouble, and give up trying to control the unknown is a hard habit to break.

The only thing I know for sure is that I don't know much at all. I can live and grow and learn from my experiences, and for the most part, I can choose my attitude. I can try again and again and again if I don't get things right, and I can create hope and live in peace as long as I keep my perspective in check. The struggles my daughter and I face, and will continue to face will surely be there to meet us, and I can keep going, or give up. For her sake, I will not give up. I don't have all the answers. I don't even know all the right questions to ask. I don't know how to rid my anxious mind of worry, doubt and sadness... but I will keep trying to replace it with the lessons bestowed in the "big picture."

Not all our days are good ones. In fact, it seems lately everywhere we go we get more stares and glares. Avery now outwardly appears different and disabled to all who encounter her, and that has been a little tough to swallow. But day by day I am learning not to let the small stuff... or the "what she can't do's" ruin my precious time as her mother. I suppose in many ways this is all part of acceptance. I accept that Avery has many limitations... but I also accept and love her no matter what the day has been like. Whether she has moved forward or backwards. Whether she has suffered from another unexplained fever, had puzzling lab results from bloodwork, is covered in "spots" or mastocytomas for some unknown reason or not. I can't control it. I can only work hard to maintain sanity, search for answers, and love my family with my whole heart and soul.

So as the summer days drag on, I am optimistic that within them I will share thousands of precious moments with my two daughters, before they become three. I stay so busy at times I can hardly see straight, but within the daily grind there is always time to be grateful for the positives. I spend far too much time worrying that I am not doing enough for my girls... and my mission for the next few weeks before our family expands is to try to let that go, and just continue to do the best I can and let it go at that. It's harder than it looks, but surely I can do it.