At two weeks old, my precious baby boy had just been placed on my chest for the very first time. He was hooked to what seemed like a million wires. He was indescribably small, but he was ours. I could feel his tiny heartbeat racing through his paper thin skin, placed against mine. I could feel the machine breathing for him. I wondered if I would be able to feel when his heart would stop beating.
Those were heavy words I said that day, Jon by my side. Heavy because I held Jack for the first time on our 5th wedding anniversary. They let me hold him because he was not going to live. The doctors and nurses had no idea the significance of the day. My words acknowledged our anniversary and the depth of love I felt for my husband. The depth of love I felt for this precious boy who was ours. That the day was still the best of my life.
No young bride has any idea what her days will bring, but experiencing life through the lens of traumatic birth and catastrophic illness can either make or break someone. I have certainly spent many of my days broken. More oft than not though, we get up, brush ourselves off, and keep going.
I don't need to write paragraphs patting myself on the back for our marriage making it. We know the statistics of marriage and special needs parenting and no, we don't have a magic formula. As Jack grows and the severity of his health becomes second nature, we just live. We choose to support each other. We let each other chase after dreams. We choose joy and we love. We love even on the days when life's pain is too much to bear.
A decade later, May 29th will still be the best day of my life.
*photo generously taken by Now I Lay Me Down to Sleep.