My 10-year-old makes her own meals and manages her own schedule. I don't spend as much time with her as I'd like.

• My eldest daughter had to learn to become self-sufficient at an early age.
• I have limited time for her because most of it is spent caring for my youngest.
• It's not the life I would have chosen, but my family is stronger for it.

My eldest daughter is self-sufficient at 10 years old. She gets herself breakfast and lunch, manages her own schedule, and finds ways to fill her time.

I never dread her school breaks on holidays and in the summer, I don't arrange entertainment for her, and she very seldom whines about being bored.

I just wish all this was by choice.

My 6-year-old has a debilitating disease

Instead, my eldest daughter's independence has come about because of my family's unusual circumstances. My six-year-old daughter has a rare progressive disorder called Rett Syndrome.

Her disease has stolen her words, hand use, independent mobility, and much of her swallow function. It has left her with a wheelchair, speech-generating device, feeding tube, and epilepsy.

With the help of my husband, I spend most of my time doing tasks like blending food, preparing medications, coordinating in-home helpers, fighting insurance denials, and driving to medical appointments.

Our workload intensifies whenever my youngest is not in school, her in-home helpers cancel their shifts, or she becomes ill. Because of her weakened immune system, she spends most of the winter sick. Meanwhile, my husband and I spend most of it caring for her.

Unfortunately, all this leaves little time for my eldest daughter.

My eldest's self-sufficiency is a silver lining

I struggle to do the most basic things with her, let alone, coordinate playdates, drive to after-school activities, or act as her entertainment director.

Instead, my eldest plays a vital role in our household. She relays messages, fetches supplies, helps with her sister's feeding tube, and operates our van's wheelchair ramp.

This might sound like my eldest has the short end of the stick. But her self-sufficiency has been one of the biggest silver linings of her sister's disease.

While my eldest daughter's peers are whisked from one activity to another, remain glued to tablets, or complain about being bored, she has the freedom to make what she wants of her time.

When she's not in school she's typically playing with neighborhood kids outside or, when the weather keeps her indoors, reading, designing art projects, or writing stories and poems.

The moments I spend with my eldest are precious and wonderful

I do spend time with my eldest daughter, of course, but not in the way I envisioned when I first became a mother.

Our moments together aren't as frequent as I would like and require a good bit of coordination.

However, because they are so few, they are also precious and highly enjoyable.

When my youngest is healthy and an in-home helper or my husband can care for her, my eldest and I plan activities together.

Sometimes she chooses a recipe and I give her a cooking lesson. Other times we spend a night in a hotel or have a "spa night" painting our nails and playing Mad Libs.

We look forward to these pockets of time when we laugh, talk, and share meals without stress or interruption.

This isn't the life I would have chosen but our family is stronger for it

Sometimes I worry that my eldest's limited extra-curricular activities will eventually make her a less competitive college applicant. She won't have an application filled with sports, language lessons, after-school activities, or service projects.

However, when I feel guilty, I remind myself that she will have many of the things one needs to succeed in life — self-reliance, independence, resilience, flexibility, and compassion.

Though this is not the life I would have chosen for my family, we are all stronger and wiser for it. My eldest daughter is a perfect example.

She doesn't fidget in the doctor's waiting room, even when she doesn't have a phone or a tablet. She doesn't walk by someone in a wheelchair without acknowledging them. She opens doors for others, stands up for her sister, and calmly accepts any last-minute changes to our plans.

I couldn't be prouder of the person she is becoming.