I have two really special children – it’s just that one is alive, and the other is not. Yet, I’m still learning from them both every day.
These pictures were taken exactly one year apart with both of our miracles. The first picture is one of my favorites of Scarlett and Blake together. They were playful and happy. Laughter filled the room that evening one year ago. When I took this picture I knew I was trying to capture a special feeling. I wished I could bottle it or preserve it forever. I soaked it in and was thankful that this feeling was even possible. Blake’s recent tests were good, his last echo better than any that preceded it, we were just finally learning to normalize the enormous stressors that accompanied his care, and for his diagnosis – he was thriving.
Looking back one year before this picture, Blake was so medically fragile. It was just a few months since he had been on life support. Managing his many medical appointments, medication schedule and uncertain future were incredibly overwhelming each day.
Looking forward, this same picture also marks exactly one week until he stopped breathing again there in the living room, and exactly one month from the day he would take his last breath.
The next picture also shows my two children, except we honor Blake in the urn above Scarlett’s head. Until we decide on a final resting place or appropriate space to spread his ashes, we will keep him close to us in our family room surrounded by our love and some of his special things.
Our hearts remain irreparably broken and our spirits forever wounded. There is no changing this story, and most days it’s incredibly hard to accept. Each day, we can just try to do our best. Some days that’s not easy. On others, we push ourselves to intentionally create new positive memories and enjoy our time together. We understand first hand – life can be fleeting, hard to understand and unpredictable.
The difference in one short week, one month or one year can be hard to believe. We just can’t anticipate what is around the corner. From my perspective, there are a lot of lessons jumbled up in all of this. I try to detangle and make sense of them every single day. The big one – life is precious, and not guaranteed.
As I look at these pictures, I’m reminded of all that I have in addition to all that I’ve lost. This holiday season, and every day, let my beautiful Blake be a reminder to share your love with those you care about, embrace life’s journey, hug a little tighter and love a little more.