A Caregiver Who Can Move Mountains
A caregiver who can move mountains doesn’t appear on the scene fully formed. As guest blogger Laura Spiegel learned after her daughter was diagnosed with cystic fibrosis, and as almost every parent raising a child with disabilities discovers, love and experience and challenges combine to shape us into the caregivers our kids need us to be.
I worked in healthcare for twelve years and was always drawn to the emotional parts of managing chronic illness. I partnered with doctors and nurses to help them address their patients as people first. I helped people living with chronic illness fit their daily self-care into their already busy lives.
I really thought I got it.
But on August 12, 2013, my five-week-old daughter was diagnosed with cystic fibrosis. And I quickly realized that everything I had been talking about for years was—just that. Talk.
I knew the lingo. I had empathy. But I did not get it.
I didn’t get what it was like to hate the word “disease” because it was ugly and deadly and in no way a reflection of the smiling infant in my arms.
I didn’t get what it was like to quarantine my baby from October through April for fear of germs that could leave her hospitalized.
I didn’t get what it was like to feel at war with the outside world. Where sandboxes posed bacteria risks. Where another child’s cough could fill me with dread. Where the playground, the museum, even church, were battlefields to be avoided at all costs.
A world where no matter how I much I tried to put my life into perspective and deep breathe and give thanks, I couldn’t escape the fears and “what ifs” that crept into my mind night after night after night.
Over the past nine years, I have grown stronger. I have learned to celebrate the blessings that come alongside the battles. To recognize what’s a big deal and what’s a minor bump in the road to be forgotten later.
I have learned to control what I can control. I have placed my daughter squarely at the center of her care team. I have partnered with her physicians and at times pushed them for what’s best.
I have found purpose in advocating not just for my child, but for all children living with heightened health care needs.
And I have come to respect myself for what I am today: a caregiver who can move mountains one pebble at a time.
Through it all, I have tried to hold myself and the friends and family that surround us to one key principle. My daughter has cystic fibrosis, but that alone does not define her. Defining her exclusively by her health—or attempting to center our family entirely around it—seems so limiting. Like capturing black and white alone in a world full of color.
My daughter loves player soccer, looking for ladybugs, and telling spooky stories. She also has cystic fibrosis.
And me, a caregiver who can move mountains? I’m going to paint her in color.
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Laura Spiegel spent 12 years at the world’s largest biotech company, partnering with professionals and care teams to help people with special needs and disabilities lead full and happy lives. In 2013 her daughter was diagnosed with cystic fibrosis. Laura now hosts Paint Her in Color, a website that offers emotional support to parents of children with special medical, developmental, or behavioral health care needs. When she isn’t reading, writing, or soaking up time with her husband and kids, Laura can be reached at Paint Her in Color, by email at firstname.lastname@example.org, and on Facebook and Twitter.
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