What I've Realized About My Child After Her Health Declined

When Mila was a baby, I remember feeling like she and I were one being. She nursed until she was two, she slept in bed next to me for the first six months of her life, and I carried her on my body almost everywhere I went. But there was something even greater than the physical attachment. When she was excited, I was excited; when she was fussy, I was fussy. It felt as if she were an extension of my body and my mind. As she grew older, I felt her detach and become her own person with her own personality and her own interests. When she started preschool around two, I would watch her slip into her own little world, independent of me. It felt strange at first, especially since I had been at home with her, by her side every step of the way. But it also felt right, part of the natural process of growing up.

During this time, she was drawn to friends at preschool like a magnet. She decided splashing in puddles at the end of our block was more fun than making it to the playground. She found her favorite muddy nooks to play in at the farm in the summer. And singing the words to Puff the Magic Dragon and Rudolph the Red-Nosed Reindeer never got old. She always wanted mango ice cream. And she insisted I include her in every story I made up — Mila became a princess and joined the royal ball, too! Mila and her mermaid sister found the underwater treasure! Mila grew wings and flew up into the sky with the fairies!

But Mila’s independence only lasted a few years. As she started to stumble and fall, I spent more and more of my time by her side helping her up and spotting her at the playground. As she fell behind with drawing, cutting, picking up small toys, singing the alphabet, I sat beside her and helped. When she started to make a bigger mess at the dinner table, I pulled my chair closer to her and pushed her bowl under her chin and corrected her grasp of her spoon. Mila had just figured out how to push her strider bike and lift her feet when things took a turn, so I held onto the handlebars with her and let her feel the bike glide below her.

Time passed and everything became harder for Mila. As she was losing her vision, she relied more on me to help guide her in busy outdoor areas. As her talking became more difficult, she needed me to stroke her arm and help encourage her to retrieve the correct word. As Mila’s walking became more unstable, she turned to me to help her up when she fell and place her hands on the stairs so she could climb up on all fours. I started to carry her when she was tired. In retrospect, I now realize that Batten disease was taking its toll on Mila. I would describe to her the cows outside her window when we drove past a field, or the fluffy white clouds like sheep in the sky when we took a walk. Her independence slowly slipped away.

In the last few months I’ve realized that Mila and I are one again, as I help her along in life. However, the light inside is still uniquely Mila — radiating joy and strength. What gives my life purpose now is working towards a future where her light continues to burn as brightly as it can.

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Getty Images photo via ChristinLola