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I worried about who would care for my child with significant medical needs. I gave her 3 siblings to help when I'm gone.

The author had three more kids after her first daughter was born with significant medical needs.
  • I always thought I'd only have two kids.
  • My oldest has significant medical needs, and I wanted her to have lots of siblings to help her.
  • I know there will be times when I can't care for her, but her three siblings can step in.

I always wanted children but never imagined having a big family. I assumed, wrongly, that I would have two happy and healthy kids.

Kids who would keep me up at night worrying about mundane, average concerns like whether they ate enough vegetables as toddlers, stayed out too late as teenagers, or didn't call me often enough when they moved away.

My job, I thought, was to launch my children into the world as independent adults.

My first child has significant medical needs

All of that changed when my first daughter, Claire, was born.

She came into the world quiet and struggling to breathe. From her first moments, she required intensive support to manage a myriad of complex health conditions. As the months wore on, Clarie did not progress along a typical timeline. She didn't crawl, sit up, or babble at the same time as other babies.

With each milestone she missed, her future looked increasingly bleak. Instead of wondering where she might one day go to college, I worried that she would never be able to live on her own.

As Claire grew, it became clear that she would always need help with basic tasks most people take for granted. She was unable to feed, dress, or bathe herself. Worrying about who would take care of her when her father and I were no longer around to care for her consumed me.

She has a team to support her

As Claire got older, the amount of care she needed to get through each day was staggering. She has one-to-one aides at home and school and works with physical, occupational, and speech therapists almost daily. She sees several doctors a month.

Claire needs help with every area of her life, from taking her medication to brushing her teeth. She can't walk steadily or speak. Claire is a joyful young woman who loves the same things a lot of teenagers enjoy: going to the movies, being near water, flipping through fashion magazines, and eating big bowls of ice cream.

Yet, she requires a tremendous amount of support and attention to be able to live at home and be a part of our community. So many people are a part of making sure she stays healthy and can thrive, and I call them "Team Claire" for short.

I wanted her to have an army of siblings on her side

All of the support Claire has in place is hard-won. It is a struggle to ensure the delicate balance required to keep her healthy and happy stays in place. Resources for home care are scarce, specialists are hard to see, paperwork is crushing, and there is an ever-present threat that services will be cut.

Managing Claire's care is a part-time job. It is rewarding and necessary but often time-consuming and frustrating. Claire's father and I, naturally, shoulder this responsibility and fill in the many gaps. But we are not immortal.

When Claire was young and the amount of support she needed became apparent, I knew she would need a big family to help her when I could no longer. We first gave Claire a brother, one who still adores her. I know he will do everything he can for his big sister, but I didn't want him to have to shoulder this immense responsibility alone.

Eventually, I had another daughter, a sister who was born to nurture. She wants to be a doctor when she grows up, a career aspiration borne in part from wanting to help other kids like Claire. However, as the weight of the responsibility I would eventually leave on their shoulders grew, I thought about adding another child to our family.

I decided to have a fourth child

As years went by and I grew older, I knew the day I could no longer care for Claire would inevitably come sooner than I would like. I worried that the burden on Claire's two siblings, each with their own full lives and aspirations, might interfere with their ability to spread their wings and start their own families.

I began thinking about whether it made sense to have a fourth child, someone else, to love and help care for Claire. Even though I knew having a baby would pull me in even more directions, eventually, I decided it was the right decision for Claire and for our family.

That fourth child, now 10, has protected his sister from the start and is the perfect bookend to our family. While I don't know what the future holds, I am glad Claire has three siblings who adore her. I sleep better at night knowing that my four kids will always be a team and rally around their sister and each other.

Read the original article on Business Insider
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