Why I'm Choosing Happiness When Facing My Daughter's Ultra-Rare Disorder


I was born happy. Growing up, my family was known for our happiness. But when we were told my daughter Robbie has a rare neurodegenerative disorder, hereditary spastic paraplegia type 47, and the nine other known children with this disorder have severe physical and intellectual disabilities, I admitted to my husband that I believed I would never be happy again. I thought my joy in life had been depleted. He quickly told me, with a confidence I thought foolish, that this was not true. To me, it seemed he didn’t grasp the gravity of the situation. It turns out I was wrong, and I have never been so pleased to admit he was right.

After a short grieving period, I found myself soaking up every second of delight my children could bring to me. The turning point occurred when I asked myself two questions: Do I want to live a life where I am anxious and terrified daily of a disorder that, being so rare, has been deemed impossible to predict? No. Do I want to spend our time together consumed by the challenges that could come? No. I realized I needed to live for the day I was in. I became determined to see more smiles, happiness, and laughter than tears or disappointment out of my children at the end of every day. It became clear that, regardless of what happens in the future, I want our children to remember their early years as flashbacks of silly dance parties, constructing elaborate costumes from cardboard and decorative tape, indulgent smiles, and sticky hands from a coveted ice-cream treat.

I have never more understood the value in counting your blessings. While Robbie’s disease trajectory is unpredictable, we have been told her case is presenting mildly at this point. The support from friends, family, and our amazing team of therapists has been phenomenal. My husband is my rock: consistent in his strength, security, and sense of humor. My son is patient and gentle with Robbie, a kind soul who genuinely enjoys his sister.

And then there is Robbie. She is, quite frankly, the essence of joy. Her smile is utterly irresistible, with laughter surprisingly robust for such a quiet little girl. To meet her really is to adore her. It amazes me daily how so much personality can be projected out of a child with so few words and who faces so many challenges. On countless occasions, medical professionals have said her personality will help her go far, and of this I am certain. These are just a few of my many blessings.

Since my decision to live for the day and to appreciate the smaller moments, every day has been a good day. There have been sad days and hectic days, busy days and long days. But I have not had a bad day. Every day my daughter shows progress is celebrated. Each milestone is marked with giddiness and elation, a happiness my children relish and, in turn, exude in their daily life. Should the time come when our fears become a reality, I will take a moment to grieve. And then I will re-evaluate what I consider to bring me joy and strive to attain it. In these moments, if my pleasure in life does not come innately, I know I have a choice. And I choose happiness.

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Photo by The Right Click Photography.

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