Like a story from a fairy tale, my daughter was born at the stroke of midnight. But she didn’t wear glass slippers or sleep through the night like Aurora. She came with unmatched hunger and beauty. She was poised to be my heroine. A love for the ages. Then her two brothers came and that love, though no less, was shared.
Her brothers both have rare diseases. One has a central nervous system disorder called Pelizaeus-Merzbacher disease, while the other has fibrous dysplasia, a rare bone disease. Instinctively, our attention turned to doctors, research, prayers and arguments and counter-arguments about their care.
Two years have passed, and we’re still adjusting. In life, like a rugged mountain trek, we continue to encounter steep hills, rocks and tree roots. I believe God has been the trail guide who makes sure we don’t go off-course. And it’s on this terrain that my daughter have will no choice but to mature quickly and to endure.
My daughter is forced to concede the center of attention to her brothers. She tries to make sense of it all now, but in time she will be our guide. Though today I hold her hand, tomorrow she will hold all of our hands. This is my princess, the sister of two special boys.
1. She is Alice in Wonderland. One day she woke up and fell in this hole. Everything is upside down. Cats disappear, rabbits have clocks and there is more than one Mad Hatter wearing a white coat.
2. She is Cinderella. At least she feels like it sometimes. “Clean your room! Help your brother! Keep an eye on the baby!” She does her best to help. She traded gymnastics, ballet and painting lessons for trips to physical, occupational and speech therapies for her brothers. And with forged kindness, she tends to her brothers after surgeries, brings them food, protects them from falls, becomes their playdate and hauls them along.
3. She is Ariel. A romantic at heart, she loves music, flowers and forks. She’s passionate about the sea and has a profound desire to explore the world. Someday she will. Maybe with us, maybe alone. I am convinced that during those travels she will appreciate more, laugh more, live more and pray more.
4. She is Jasmine. She loves animals, but doesn’t own a Rajah, an Abu, a Lady or a Tramp. She has just one humble and inconspicuous fish, Cleo. This humility will set her apart. She will see the value of people for who they are and not for what they own. She has come to learn that truth early on.
5. She is Belle. Books are her escape from this world. She immerses herself in spectacular prose where heroes fly, maidens are rescued and good always wins. By now, she has seen firsthand the heroic hearts that lie inside little children with illnesses. Valiantly, she steps off the sidelines and joins them in nightly prayers, kisses and hugs.
6. She is Merida. A little bit of a rebel with a cause, she questions and expects insightful explanations. She doesn’t take a simple no for an answer. Like a mother bear in training, she defends with all her might those she loves and those who are overlooked and frowned upon.
7. She is Elsa and Ana. A sisterly bond exists in her heart. Though she was not blessed with a sister confidante, she seeks one. Sometimes she finds it in her mother, her cousins or her friends. Her heart is not frozen, and the perils she faces will give her the fairest, strongest and bravest of all hearts. She will understand true love like no other.
8. She is Sofia the First. Her world has been turned inside out. She’s part of a world she doesn’t understand, but she tries her best. She doesn’t know the rules and makes mistakes. But she makes up for them with absolute kindness to those around her. In time, she’ll find her place in this world and will become her own princess. She will be my very own Samantha the First.
Though she possesses qualities of a number of princesses, she’s in her own league. She’s perfectly imperfect. I pray the tribulations of our rare life do not pull us in so deep that we are robbed of living the extraordinary moments. I have faith that when all is said and done, she will know she matters, that she will make a difference and that she will know that she is loved. And more than anything, that she is just as special, if not more.
The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
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