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.
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 if’s” that crept into my mind night after night after night.
Over the past six years, I have grown stronger. I have learned how to manage my anxiety and slowly burst my daughter out of her bubble. I have protected my child and advocated for her in the best and worst of times.
I have learned how to communicate with her doctors. I have partnered with them and at times even pushed them for what’s best.
I have connected with dozens of other parents and caregivers who are walking in the same shoes. Some have the same look in their eyes that I did not long ago. Actually, the same look I sometimes have today. Because when it comes to raising a child with special health care needs, it can be two steps forward, one step back.
But above 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.
And me? I’m going to paint her in color.
If you are the parent of a child living with cystic fibrosis, check out my new web site Paint Her in Color. It is the first site of its kind to offer emotional support to parents of children with medical, developmental, or behavioral health care needs.
With a weekly blog, emotional support resources, and tools for better communicating with care teams, we help parents and other caregivers paint their children “in color.” What does this look like? Embracing everything we can to help our children lead long and full lives. Refusing to define our children solely by their health. Balancing daily care with the unexpected messiness and vibrancy of childhood. Nurturing the blessings that come alongside the battles. And learning to treat ourselves with kindness.
Please share with friends who you think might value this new resource. Together, we will celebrate our families and strive to make all of our journeys brighter!
#SpecialHealthCareNeeds #OurVibrantKids
Laura Spiegel is the mother of two wonderful kiddos, one who has CF. She is a member of the CFLF Board of Directors. Laura is also the founder of Paint Her in Color, a new web site that offers emotional support to parents of children with special health care needs. She can be contacted at laura@paintherincolor.com, on Twitter @her_color, or at www.paintherincolor.com
Help Others Live STRONGER and LONGER-
***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation***
***Please speak with your physician before making any changes to your CF management***
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