There is always something in the air the night before. Actually, there are many “somethings” in the air the night before. Hope. Exhaustion. Fear. Anticipation. Calmness. Panic. (Yes, many contradictory “somethings” can be in the air all at once) And sometimes floating aloft in the air bumping into all those other “somethings” are those thoughts that we keep pushed into the hidden recesses of our mind. You know, “those” thoughts. The ones that take you to “that” place. The big “what if” of this journey. (My fellow SN parents of children with a life-limiting condition know just what I mean)
Ah….this journey. Having a child with a life-limiting condition is a journey that I dare say no one can understand unless they are walking on the same road, in the same shoes, in the same boat, whatever metaphor one chooses to use. It is one hell of a ride that can’t be described easily, quickly, or painlessly. This journey will rip your heart out and shred it into a million little pieces. It will bring you to your knees in prayer and in suffering. At times, you will want to die. Wait…what? Die? Yeah, die. As in, can I trade places with my child, this precious, beautiful earth angel? Can I just die and give him my life energy so he can see adulthood and the myriad of experiences that a full life offers? Can’t I just do that? Can’t I? Well, the answer is no, it doesn’t work that way. So, along the way during this journey, you will stumble and fall…back onto your knees in prayer and in suffering. But along the way during this journey, you will also experience unconditional love; a love that can only be shared by someone who is as purely innocent and sacred as an angel. In fact, because they are angels. Souls who know nothing but light and love. And that unconditional love? It isn’t us, the parents of these angels, who are so readily giving of this cherished and illusive unconditional love. Rather, it is our angel that is the one radiating and blessing us with this unconditional love; showering it on us with all our failings; looking at us with eyes that reveal their complete confidence and faith that we will protect and nurture them with the same unconditional love as they hold for us. Herein lies the key to this magical journey with a child who has a life-limiting condition – unconditional love. More on that another time. For now, back to The Night Before.
The Night Before and all of those “somethings” are in the air. The Night Before your precious earth angel gets put under anesthesia for yet another surgery or procedure. The feelings and thoughts that rumble through your mind, your heart, your soul, and keep you from sleeping. For me, it is the motivation behind this, my first blog entry, as tomorrow my son Brendan goes in for his (insert number because I’ve lost count) procedure where he will be put under general anesthesia. Images flash through my mind of last time he was in recovery from anesthesia and I sat in the waiting room as the hours ticked by with no word. Then word came….de-satting, on oxygen, heart rate dropping. No you cannot come back and see him because of “privacy” reasons for the other children in recovery. Forget them, was all I could think, just let me see my son! When he’s stable, Tracy, then you can see him. And so it goes. The video replay in my head haunts me The Night Before. But I tuck the covers around him as I sit here on this hospital bed, looking at him while attempting to clear the “somethings” out of the air so I can see him more clearly. And there he is….the most beautiful angel fast asleep without a care in the world. Suddenly, for that moment, all is calm and all that remains is everything – unconditional love.