NO, we are not doing a gift exchange... although that sounds much more appealing right now than how I really feel about my explanation of the title of this entry.
Today began as any other... we played with our kids this morning, got some chores done, paid bills (ugh), paraded in and out of Ryan's room with his entourage of IV poles, feeding tubes and yards of oxygen tubing. We laughed, we played, ate lunch, and the day went on. We also had visitors today, Debbie and Jen from NC, Grandma Hawn, Great Grandma Crutchfield, Harold and Aunt Kelly. It was a busy household and nice visiting with our "out of town" guests and family. We were also brought dinner from Charlotte's Aquatic OT from Ranken Jordan, Heather (see entry below, Heather, you scored a 10 on the Charlotte scale tonight). Dinner was great, we went on a walk afterwards and were chased by swarms of mosquitoes (a mistake we won't make again). When we got home, we began the bedtime routine, brushing teeth, reading books and tucking the kiddos in bed (although Ryan didn't approve of his bedtime and needed a bit more coaxing to drift off to sleep tonight). Chris and I did what we would do any other night and plopped our weary bodies on the couch to veg in front of some quality t.v. (DVR Grey's). When it was over, the t.v. turned off and the house was filled with near silence (listening to the hum of the oxygen compressor in Ryan's room), the tears began to flow...
A feeling of guilt set in... that I had lost myself in this meaningless t.v. show and that it felt good. I wanted that good feeling to last and as the t.v. show ended, began the realization that as we have done many times in the past, turned the t.v. off and mosied on to bed, I will never be that person again... My life changed forever on a day that began just like this day, a day that I was oh so unprepared for. (The theme of the Grey's episode we watched tonight). It was true... and it had happened to us. The days that I had prepared myself for, the big days, wedding, graduation, first day of college, first day as a "practicing nurse" all have impacted my life, but never so much as a day that began as ordinary as the next and ended in such an unexpected way.
As my tears began to flow, Chris pulled me close and then they were flooding my face. He knew I needed him to smother me with strength at that moment, even though he too was drawing strength from me as tears welled up in his eyes. We talked more about why we were so emotional tonight, the hard stuff to say. It had nothing to do specifically with what happened today, more so of what didn't happen. Each day we avoid saying certain words and instead insert phrases like "not much time" or "as it progresses" or "down the road", all referring to how much time we have with our son and how our lives have changed and how/when this will "end". The words we avoid are the "White Elephant in the room". The severity of Ryan's sickness is something everyone acknowledges but no one wants to talk about. It is not that we want to talk about it every minute of the day and we do not want to focus (as we have said) on the fear of what is to come when he is still here with us. But, when the day winds down and we prepare for the next, these feelings creep in. Communicating these feelings with each other is important for us to do because it is what draws us closer. We also know the importance lately of picking up a stick or two to throw at a tree, taking the hilly path to walk on instead of the level sidewalk, asking for help from one another when the pain is too great, leaning and holding each other when a good cry is necessary.
We are posting this personal entry for three reasons. It is an outlet for us, we want to share our feelings with others (and sometimes it is easier to type than say), and we want to continue our "written memory". We are sometimes afraid we will forget how we feel at this time, mostly because it is a numb feeling and hard to explain. Not that we want to remember this hurt, but dealing with it now will help us, and there are good memories too.