05/12/2014 03:22 pm ET Updated Dec 06, 2017

'Why Is His Hair So Long?'

My 2-year-old son has long hair. He is often mistaken for a little girl. This does not bother me. If it did, I would cut his hair. For over a year, many people have urged me to cut Zachary's hair. They make jokes. They tease. They judge. They push. That's fine, I don't let it bother me. Very few people understand what my family and I have been through, and that seemingly insignificant things -- like a little boy's hair -- actually hold deep meaning to a mother who lost her son.


"Why is his hair so long?"

I recently posted some beautiful, precious photos on our Micah Smiles page. We delivered new children's books for babies in the Neonatal Intensive Care Unit (NICU), courtesy of everyone who's donated to the NICU's Micah and Zachary Giving Library. We went up to the Pediatric Intensive Care Unit (PICU), where Micah lived for nearly 10 months, and visited with Micah's primary nurse, Nick. We showered Micah's photo on the PICU's Wall of Courage with kisses and smiles, exclaiming how much we missed and loved our precious son. We headed up to the general floor to visit our friends, whose 9-month-old baby girl is fighting a life-threatening battle.


I posted pictures of this special afternoon, and in the comments:

"Why is his hair so long?"

I responded, "Because it is beautiful."

But what I really wanted to say is...

2014-04-23-DSC_3291.JPGZachary's hair is long because Micah's never will be. When my son Micah was born, he had a head full of thick, beautiful hair. When Micah became critically ill with necrotizing enterocolitis and end stage renal disease, he lost all of his hair. Micah went bald. Seeing Micah bald, after he had a head full of gorgeous hair, was a constant reminder of how fragile and sick he was. As Micah's health improved, his hair grew back and thickened. When Micah's health declined, his hair fell out and thinned.2014-04-23-IMG_6081.JPG

Micah's last night here on Earth was spent in our arms. We held Micah tight and he knew he is deeply and forever loved. Before I gave my son a final kiss goodbye, I carefully braided and tied the hair at the nape of his neck. I carefully took scissors and cut Micah's hair to keep and treasure forever. On the one year anniversary of Micah's passing, I took out that small envelope of his hair and kissed it, and longed to have my son back in my arms.

For me, Zachary's hair is a symbol of his health. Zachary is incredibly healthy, vibrant and bright -- his long hair testifies to this. The tips of Zachary's hair have experienced our entire journey: Zachary's three-month, terrifying NICU stay. Spending every day in the PICU with Micah. Bringing Micah home for the first time. Our first family walk together. Saying goodbye to Micah.

Before you judge the mother of a little boy with long hair, take a step back and consider the bigger picture. What has this family been through? What has this little boy been through?

Why shouldn't his hair be long?

A little boy's hair might just hold deep, precious meaning to his mother.


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