Months go by and things are so normal, whatever that word actually means. One's heart might actually relax a bit and settle down into a routine of breathing in and out without having to think about it. Sadly, one also begins to take for granted all the little things they promised in that moment of crisis never to take for granted again. Little things like singing that bedtime song, participating wholeheartedly in that same conversation that you have had every single day for the past ten years, taking pictures of every moment so that you don't forget, simply living intentionally each day as if it was your last day.
Then all of a sudden the deja vu of reality collides with your "normal" world. School days are replaced with days of sleeping and pain medication. Long days of just having fun are replaced with doctor appointments and tests upon tests. The peaceful chaos of every day is replaced with the tense chaos of the unknown. Breathe in. Breathe out.
Its not a feeling of despair or hopelessness that overcomes my heart most days. Sometimes its fear. Fear when I watch him not be able to open his eyes or he says for the hundredth time that day that his head hurts. Its what makes you hold your breath until the crash is over and he returns to his normal baseline. That is when you know it was just an infection and he is just fine. The only problem this time is he really isn't going back to baseline and that is why the many appointments have begun.
Sometimes its just the exhaustion of wondering what's going on inside his body and managing that along with every other part of life. Those moments are when I fight to find a balance. A balance between fear that pushes me to the point of calling the doctor but not to a point where it keeps me from trusting the Great Physician. A balance between doing what is necessary to keep his life as healthy as possible so he can have the best life possible and but not doing so much that we steal away the quality of his life. A balance between limiting his exposure to germs and yet, still giving him access to his friends and people that bring him so much joy.
For now, we do the necessary. We make appointments and find out what we are dealing with. We know we have a blood clot. We know we have to take the port out. We know there could very well be just a simple infection causing all kinds of havoc. We also know it could be yet another life altering moment. Until we know, we will choose to rest in what is for certain: Every day, every moment is held in the hands of the One who knows everything and has gone before us to make a way.