It’s happened for twenty-five years now and I’m still caught off-guard. March rolls around, and as it gets underway, a sadness and uneasiness envelop me. Something’s wrong; things are not as they should be. A short pause and it’s all clear. Of course, it’s that time of year again.

My daughter Leah would have been twenty-five years old this past March. She was born prematurely, fought like crazy to live, and suffered. She was six weeks old the first time I held her without all the tubes, IV’s and electrodes. I swaddled her with my love, wishing that moment was the beginning, not the end. It was Mother’s Day, and she died peacefully in my arms. Never in my life had I experienced such profound loss. Intense grief seared through me, tearing my heart apart and bruising my soul.

Leah’s life, and death, changed me. At the ripe old age of twenty-nine I now knew how little control we have over our own lives and that yes, bad things do indeed happen to good people. What I find truly miraculous is not only do most of us who’ve been through such sorrow forge ahead, we embrace life even more fully. I believe I’ve done this, armed with the lessons I’ve learned:

We’ve all likely heard this one before. You truly appreciate what’s important in life when tragedy occurs. While this is true, I have to admit I already had my priorities in order before Leah was born. I didn’t need a crisis to set me straight. My family and loved ones always came first. I knew what mattered. Her life and death just confirmed it.

Life is not fair. I’d actually believed if I did everything right (throughout my pregnancy, for example) then all would be well. Those women whose babies ended up in the NICU?  They probably didn’t take care of themselves in some way, shape, or form. Needless to say, this old belief of mine has been blown out of the water more times than I can count. I no longer judge others.

Time really is precious. Books have been written on different parenting techniques, and how we can do right by our children. To me, it’s quite simple. Just be there. Give them your time. Give them you. Because at the end of the day, none of us knows what tomorrow will bring.

 We need each other. Genuine concern from the doctors and nurses who cared for Leah made the unbearable bearable. The support and love of my parents and immediate family kept me away from that edge I was so dangerously close to. Friends who continued to call even when I could not bring myself to talk to them let me know I was in their hearts. I learned the worst thing you can do when someone is hurting is stay away. It doesn’t matter how uncomfortable the situation might be; we need to show each other we care. Call, send a note, drop by with food, flowers, a hug. You don’t know what to say? Don’t say anything. Words are overrated anyway. Again, just be there.

Don’t underestimate the mother-child bond. There were many times during our six week ordeal that the only place I found comfort was by Leah’s side. I was rarely allowed to hold her, but I always felt her love and spirit. Her strength and courage were palpable, and I knew when she was fighting with every ounce of her being to survive. I also knew, before anyone else, when she could fight no more.

Don’t underestimate children. My not yet three-year-old daughter took in what she could, which was a lot. What she lacked in understanding, she made up in empathy. After Leah died, she gave me a long hug, and then kissed me on the cheek. “That’s from Leah,” she said simply.

Don’t underestimate husbands. I already knew I had a gem, but I’m talking fifty carat diamond here. He took care of me, never once criticizing my inability to keep it all together at times. He loved me, understood me, and allowed me to feel whatever I was feeling, never judging. He kept our family afloat while also juggling work obligations. With the patience of a saint, he became the family spokesman, updating everyone on Leah’s daily ordeals, which were many. He was suffering deeply too; he just never let on.

Life goes on. I consider myself lucky, as over time my heartbreak evolved into acceptance. I was able to move on from my grief, though a part of me is gone forever. My husband and I took a leap of faith, and after nine months clouded with fear, found joy again: Our son Dan was born one year after Leah died. Our youngest daughter arrived four years later. Our family of five was complete…almost.

She’s always missing. I think of Leah every day, though the distinct memories of her touch, her smell, her life, have faded over time. I often wonder what might have been, who she would be now as a young woman in the prime of her life. I am keenly aware her short time on earth shaped not only my own life, but the very essence of my family. My two younger children might not have existed if Leah had lived; they are, no doubt, part of her gift to us. While not physically with us, she has always been and will always be part of our family, carried forever within our hearts.

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