Sunday, April 17, 2011
Enjoy (A Dan post)
"I think we delight to praise what we enjoy because the praise not merely expresses but completes the enjoyment; it is its appointed consummation." C.S. Lewis
I awoke today not expecting much for another Ohio Sunday. Weekends have been quite challenging the past year or two with keeping Danica safe from herself and her big sister as well as tending to my wife's two major surgeries and fatigue and pain from her fibromyalgia. The weekends are long. Very long. The Ohio weather does not help my weekend mood either. I recall a weather report stating there are usually only 100 days per year with sunshine in northeast Ohio. Born in Seattle, I absolutely love thunderstorms and rain showers, but it's the constant cloudy gray skies that wear me down. So, with a weather forecast of dark clouds and heavy rain I was ready to trudge through another tough weekend.
Today we were very excited to attend the Easter egg hunt hosted by Madelyn Sweeney from the Wishes Can Happen organization that is sending my family to Disney World very soon. I honestly was hesitant to go since the weather seemed quite chilly for a mid-April day, but I recall almost every Easter event we have attended here in Ohio the weather has mostly not cooperated. Monica and the girls have been sick too and Monica's throat is still very sore. I bundled up like it was snowing out and made sure the kids were bundled up as well, and we decided to seize the day.
I won't go into all the details of the egg hunt event, which was amazing, but we all had a very fun time. Danica literally never sat down for more than a few seconds. This is the first time in years that I have seen her out in the open air around so many kids and parents enjoying herself. She loved the cotton candy, the model train set, the bubble machine and the little chocolate easter bunny candies. She especially loved meeting the Easter Bunny. She was content with all the fun things she could do and did not once ask to jump in the bounce house or ride on the wagon behind the tractor. She collected twelve Easter eggs during the hunt in the big field and was so excited to show mom and big sis all her egg treasures.
Monica also never sat down at all. The past year, especially the past several months, have been a huge struggle for her physically and mentally. It wasn't too long ago that she was post-operative and barely able to get out of bed. Watching her from afar at the event, I realized she is the most beautiful person I know, and it was pure joy to see her and her little buddy Danica out in the public eye living life. These two girls are best friends. They have been through too much over the past four years since Danica was conceived. It was so great to see them hang out all day having so much fun together.
When we got back home I sat on the couch taking in the days events. Danica was still running around due to the chocolate bunny overload. Delaney was "trading" Danica for better egg treasures making sure she got all the really cool stuff. Monica was busy making her famous corn dip for our evening dinner. I sat there thinking to myself that today was one of the best days we have had as a family in quite a long time and definitely since Danica's second surgery. Still, something was not letting me fully enjoy the day. It is difficult to describe this feeling with a word but it was a feeling of caution or concern. It was as if I was saying, "Yes, today was good, but what about tomorrow and the days to follow. Don't relax. Don't let your guard down. Don't ENJOY this too much. It won't last."
The fun and happiness we shared as a family today is out of the ordinary. Caring for Danica has and still does carry a heavy burden. The days are very stressful. She is not 100% fused. We have several months of her wearing her Aspen collar and therapy ahead. We cannot relax now. We still have work to do. The wounds on us all are still fresh. There is still so much to recover from physically, mentally, spiritually and financially.
We needed today. We needed the sun to peak through the clouds to brighten our lives which have been so gray. When you have a child with Chiari, a child who is recovering from brain and spine surgery, it is often hard to accept that the day was actually quite fun and give God praise. There is always that concern, that caution, of what the next day holds for your child and your family. We remain vigilant with Danica's safety. We are not yet exhaling and jumping up and down celebrating her complete healing.
I am going to treasure this day nonetheless. I am going to bask in "normalness" of it all and pray through the praise for more days like today.
Posted by Monica Kaye at 8:48 PM