The Good and The Bad

We made it! We made it to summer! It felt like a sprint with final performances and recitals, field trips and field days and then eventually the last day of school! Thankfully camp started the day after school ended and by the weekend we were heading to California to visit my brother and his family. As always I had hours of cooking and packing to prepare but Friday was my day and with my lists in hand I knew I could make it happen. I was not anticipating the phone call that came in at 10:30 that morning from camp with our son screaming in the background as they informed me that he cut his fingers and probably needed stitches. 

In a state of shock I called his practitioners to make a plan. A cut like this for him was much more complicated as a Hemophiliac but with instructions, our factor to infuse and my oven still on I ran off to camp. The hours that followed were as to be expected. I infused him and we went to the local ER for two stitches and some glue. In his charming way he made them all love him but he was shaken to his core by this event. It was what he repeated throughout the experience that has played back in my head since that day- "why is it always if something good is happening it's always something bad too? The good and the bad always happen. Why can't it ever be just good?" 

I wish I had a good answer for him. Why couldn't we have just gotten to end school and start camp and go to California without something bad mixed in? Why did our trip as amazing as it was (and it was) also have to hold within it infusions and stressful bandage changes and doctor calls to continue to manage his complicated healing? The good and the bad.

This is not just about this moment in time, in truth, this is just the reality of living with rare complicated diseases. If this were the first time something bad happened with the good I know that wouldn't have been his mantra. But it's based on the ups and downs he has ridden his whole life. For us, the hard or the bad as he calls it are a part of our life - in fact it's why we work so hard to balance and fight for the good days and ensure those happen. 

At ten he is now feeling the roller coaster we ride throughout our days. Some easy, some hard, some good, some bad. Perhaps it is why after really amazing days or experiences you can hear him say to his friends, “Wasn't that just the most fun?  Didn't we just have the best time?"  I always notice him saying this but until now I am not sure I realized why he said it and how meaningful these moments are to him. They are a break from the anxiety and stress about whatever the current physical challenge he is dealing with. Moments of pure joy and fun. The good not the bad. 

We talk often about how we all face challenges and he understands his and how to manage them even when some days are harder then others.  Thankfully, he has far more good days than bad but I do not know when or if there will ever be a time when bad and good don't mix together. I think that really is the way life goes for everyone.  Perhaps what is different is the age at which he had to learn this lesson. That life is really a series of  highs and lows and on this ride we have to remember to see and feel the good moments. The lows will challenge us and at times even haunt us but the highs are what help carry us through. 

I have tried to think about when I first learned this. I am sure it was much older than 10 as many of my issues didn't really begin until I was in my early teens. Even then I am not sure I really felt as deeply as he does and I know I didn't appreciate the good days as much. 

On our trip he reminded me again of how fully he lives his good days and what a powerful and needed reminder it was after a whirlwind of stress and anxiety. He laughed hard, smiled endlessly and told me so many times how amazing and magical the days were.  He was present and mindful and grateful for each one  and said so often and throughout them. 

He left me in awe of his resilience and I realize this is really one of his greatest superpowers.   It is not just the strength and courage he is forced to have in the hard moments, because he has no choice but to get through them, but instead it is him being able to live fully and joyfully and gratefully in the good days.  I hope this will always be true for him and I know he has reminded me to also strive for this. For these are the days I know we will remember and I hope will remind us always, especially on the harder ones, that it will always go back to the good.