I’m writing this column on the eve of my daughter’s 13th birthday. We are six days into social distancing in an effort to help stop the spread of the coronavirus. My daughter has been excited about turning 13 since she was 2. She and I have imagined what her life would be like as she enters this new chapter of being a teenager. She has had big dreams of how we would celebrate this day. For her, 13 symbolized more independence: a year she gets her own cellphone, wears a little makeup, and maybe dyes her hair. All things I thought we would share together excitedly this year.
The past year and a half have been hard on my daughter as she adjusts to me and her brother being diagnosed with Fabry disease. It is strange to watch how things affect your kids. They can lose some innocence in an instant when faced with real problems. My daughter has handled herself gracefully and lovingly while supporting her family through hard times, even if it made her feel alienated.
While we are self-isolating for our community, it is also important that my son and I don’t get sick or we will not be able to go to the hospital to get treatment for Fabry. For these reasons, we won’t be having a party tomorrow. I was not able to get a cake from the store. We won’t go out for sushi for dinner as we have for years. Our traditions will have to wait for next year. My daughter is worried about whether her school will reopen this year and when she can see her friends and family again.
Even though we didn’t imagine it this way, I believe this birthday will be a defining moment for her. She faces what is really important in her life. She will learn about sacrifice. She will feel loss for the dream she’s had for this day. She will have to continue to adjust her life to ensure her brother and mother get what they need first. I know she will be amazing about everything and learn some valuable lessons in the process. This year she is getting tools for her future that will be more valuable than any gift.
I would never wish to spend your 13th birthday like this, but these lessons will make you stronger and even more amazing than you already are. Happy birthday, Baby!
Note: Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fabry Disease News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Fabry disease.
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