A Family’s Loss of a Beautiful, Soulful Child

I did not know when Charlotte was born that she would come into the world with wings, but she did. In 2002 I was newly married with a beautiful 6 yr old daughter named Maddie. The three of us were so excited to have Cha Cha on the way! Things in my life had really come together in such an amazing way. Charlotte arrived and we were all in that milk drunk, sleepless, new baby bliss! She was so sweet and angelic.

Then when Cha Cha was about 3 months old I began to notice she was not doing the things Maddie did at that age. She was diagnosed with cataracts, and was clearly missing milestones.

This is where the journey began. The eye surgeries, weekly weigh ins, the feeding tube, and then after months of tests and hospital stays…the news that Cha Cha had a rare progressive neuro-muscular disease that would be terminal. They called it Charlotte’s disease because they have never seen it before. We were given 3-5 years as her life expectancy. The air went out of me.

Before that day I remember thinking they were going to tell us she would never walk and talk, or she would face a hard road of therapy and medications. I thought no problem, whatever it is we will love her, learn our path, and find our new normal. I had not considered the possibility that between medical advances and our love and devotion we could not save her.

After a few days of unimaginable pain, I had a clear sense of where I stood. Much like my pregnancy, I would carry her, take care of her and myself, learn all I could from people who would guide us with her considerable care, and do the loving labor of delivering Cha Cha to her angel place.

Photo Courtesy of Soulumination

Against every mothering instinct, I knew I had to let her lead and accept her journey. Be present, enjoy her small victories, take in her sweetness and light, learn to connect and understand her non-verbal communication, while accepting help all along the way.

Living with the” hang on to her with all my might feeling”, battling the “let go and let her tell us when she is too tired to fight “, was some days paralyzing. I wanted her to stay, she was my baby, I was not ready, she was the center of my life, I could not bear to lose her. I had to focus on her living, not her dying…be present, be her Mama.

On September 14, 2010 at home, surrounded by pure love and covered with kisses, she gently spread those angel wings and flew. I kept my hand on her heart and told her she was so strong, so wise, and so precious. I whispered how proud I was of her for knowing she was ready to rest her body. Then I let go of all my bravery and gave into my sadness. I wish it could be different, that she could stay.

I cry most days even though it’s been a year. I give myself permission. I try to let her lessons move through me, she taught me so much. I am a little broken, but that is O.K with me, healing takes time. I have known the deepest love because of Charlotte. I am capable of more than I ever thought. Now it is time to be gentle with myself, move forward with all the gifts Charlotte’s being here gave me.