Battles against terminal illness, anxiety, and life!


I find us winding down yet another year in the life of my sweet Prince Charming. The sands of time a rapidly flowing river carrying us away in its violent fury as we desperately try to remain afloat. Each year we are carried closer to that finish line. If only I could still the waters and suspend time. We know all too well that swimming against the current will only prove to exhaust us. Clinging to love and hope we continue on this journey through another year not of fear but of thankfulness for the gift of life.

My baby boy is turning seven, and as his doctors have pointed out he is more than half way through his life expectancy. In the face of A-T I often feel so very small. My child’s battles are also my own, protectively wrapping my maternal arms around him I am willing to help slay the dragon armed with only a butter knife. It was only after becoming a mother that I truly realized what selflessness is. I would allow the dragon to consume me whole if it would keep my children out of harm’s way. This woman defends her castle with the determination of a thousand warriors and with my own knight fighting at my side in effortless fluidity to defend what is ours. A-T is our dragon, but seven is the alligator filled moat we must swim through.

Every day is a challenge, but each new year brings a very new and specific challenge. What will it be this year? How will we manage to navigate the new “normal”? We just never know what to expect except the unexpected. The consistent inconsistency a reminder of what feels like a broken promise of what life was supposed to be. Yet there is still great beauty in this life of ours for a family as strong and united as this is a rare and precious gift I will always treasure.


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