In the past few days, I have watched our son “piddle” outside, gone shopping for tomato plants and sat on the deck with him and discussed every topic under the sun. It is in these brief incidents that I feel I have him back with me, even if it’s only for brief moments. When your child is ill for such a prolonged time, your whole world revolves your child, medications and doctor appointments whether you want it to or not. Life rolls from one crisis to the next and you’ve hardly put out one fire before another one starts blazing. No, Daniel’s illness is not terminal ( at least not that we know of at this point) and he’s not in the hospital, but it’s still an illness that profoundly affects all of us.
I have learned to appreciate the moments that I used to take for granted. I’m thankful when he’s awake, alert and enjoying a meal. Seeing him outside performing ordinary tasks of cleaning up the doggie poop or surveying his garden area bring swift tears of thankfulness. Sitting with him on the deck and “discussing” world issues just astounds me, mainly because I have a very difficult time keeping up with him! For so long we have seen him move only from his bed to the couch and anything more than that is simply extraordinary right now.
The harsh reality is we are still not done yet in this bumbling, tearful journey. He has not attended a full week of school since mid-December and last week was especially harsh for him. Crying my way through it might release my emotions, but it doesn’t change the situation. If I had a dollar for every tear I’ve shed, I could retire right now and live very comfortably for the rest of my life. This trial is HARD, it’s relentless, and it’s fierce with unexpected blows that come out of nowhere.
So, we hang on and appreciate every single moment that he gets to be Daniel and not a child trying to rise above indescribable fatigue. We never know when he’s going to have a “good” day or a “bad” day, so we stopped measuring in days and now just take it moment by moment. Others may not understand why I cry when I see my son take out the trash, but that’s OK, I’m just relishing the sweet moment.