Junior high school was one of the hardest times of my life. Now that my children are at a similar life stage, I recognize that they are struggling, too. When you add Friedreich’s ataxia (FA) to the equation, the teenage years seem downright unbearable.
Having a physical disability makes my 14-year-old daughter feel left behind. “FOMO” — fear of missing out — takes on a new level of seriousness, and social media adds fuel to the fire of insecurity and feelings of unworthiness. It breaks my heart to see my daughter trying to catch up to her peers socially when I know that physically, she is struggling to put one foot in front of the other.
The dynamics of teenage girl relationships can be complicated and exhausting. And while I know my daughter’s disability isn’t the only reason she is left out, to her, right now it feels as if it’s always the cause. Her feelings get hurt and she retaliates, creating a cycle that doesn’t help the situation. And she never wants my opinion on how she should handle the murky waters of girl drama. That experience is familiar with all teens, not just those with FA.
A friend recently shared the inspirational essay, “Welcome to Holland,” by Emily Perl Kingsley. If you’re not familiar with it, I recommend that you take the time to read it here. It describes the feelings of a parent who has discovered that her child has a disability. The author compares her experience with setting out on a trip to Italy only to find out upon landing that she’s in Holland. While her child’s life is not what she had expected, she realizes that having a child with a disability comes with its own beautiful rewards.
While I appreciate the sentiment in this essay, I can’t identify with it — yet. My poor friend got an earful from me on the subject. My daughter wants to be in Italy, not Holland. She had set expectations, and now she feels that her dreams are being taken away as her FA progresses. She sees her friends playing sports, dancing, and experiencing their first romantic relationships, and feels a sense of loss that she doesn’t have the same opportunities. She knows that she’s in Holland, but she longs to be in Italy with her peers.
As parents of a child with FA, my husband and I do our best to create an ideal world for her. We stay positive and fill her time with things that she can do. We coordinate outings with other kids, though we know that most of our invitations won’t be reciprocated. We try to make the most of her abilities now because we’re aware that her physical limitations will worsen over time.
As much as we do, we know that it will never be enough when all she really wants is to be a “normal teenager.”
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