The difference between Kohl’s placenta and Amelia’s was remarkable. Amelia’s was the textbook placenta where it provided love and nourishment to her and gave her life. The extra lobe and the tangled, unwanted blood vessels of Kohl’s placenta took life.  They took the life that we planned for our son. This was evident during the first meeting with the various specialists caring for Kohl. When pressed for more details of what their jargon meant down the road, they spouted off possibilities of not walking, not talking, blindness, deafness, being developmentally disabled, etc. Each negative “possibility” took away a little bit more of the life we planned for our son. Each one was increasingly more heartbreaking.

We took baby steps to overcome the heartbreak. Hell, we are still taking steps. Just when we get in a good rhythm and begin to feel as if we have it, WHAM. Something comes along to kick you in the gut. There is a new worry that we never knew was a possibility or never knew even existed. This is where a wave of grief will come and go. However big or little, they still come. Kohl is a puzzle. His diagnosis is a puzzle. At first we wanted to know it all. We wanted to know the outcome, what he could and could not do, what this meant for our family. We felt like it would be better to know all at once and not have this grief waving in and out of our lives. Now I’m glad that we didn’t get it all at once. The thing is that waves do come and go. They typically balance out. Kohl’s diagnosis is a puzzle that continues to reveal itself to us in bits and pieces. The more we unfold, the more we learn and the more we realize we don’t know and may not ever know.

When we were given the litany of the worst possibilities for Kohl, it was always in the context of “we don’t know because every child is different.” In the early days after Kohl’s birth, we found this to be incredibly annoying, as we wanted answers.  In our “let’s have a game plan on how to handle this situation” discussion, Andy and I decided we were going to be positive no matter what. It was then that we began to look at the unknown as hopeful. If something is unknown, then there is still the possibility of it being good. We may not know what Kohl will do down the road, but whatever it is, we know it will be good. He will continue to bring us joy, love, and hope. He is a puzzle. We aren’t trying to fix the puzzle but are trying to understand the puzzle.

Luckily I love puzzles.


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