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Living Life in the Rare Disease Lane: How to Find a Community of Support
BLOGLiving Life in the Rare Disease Lane: How to Find a Community of Support By Charlotte Klinepeter, KIF1A Mom and KIF1A.ORG Administrative Manager We’ve all had moments, or even seasons of life, where we are “living in the fast lane.” The typical hustle and bustle....
Our Favorite Resources to Help Children Cope
BLOGOur Favorite Resources to Help Children Cope A child’s illness or injury can be challenging and confusing for everyone. A wide range of emotions and reactions are “normal”. Your child may regress, display heightened anxiety, or have trouble expressing how they...
Going Back to School: Helping Your Child Return to School After a Long Absence
BLOG Going Back to School: Helping Your Child Return to School After a Long Absence For most kids, the first day of school is both exciting (new school supplies, new clothes, new friends!), and nerve-wracking (new teachers, new schedules, new friends!). When a child...
Teddy Bear Clinics: Helping Kids Overcome Fear of the Doctor with Play
BLOGTeddy Bear Clinics: Helping Kids Overcome Fear of the Doctor with Play Does your child dread going to the doctor? Are they anxious every time they need another medical test or procedure? One of the hardest parts of caregiving is making your children do hard, but...
Therapy for Your Child and You
BLOGTherapy for Your Child and You By Katherine Okonak, LSW, Center for Healthcare Delivery Science, Center for Pediatric Traumatic Stress, Nemours Children’s Health System When your child and family experience a serious medical illness or injury, everything changes....
Helping Children Cope with Disruptive Events
BLOGHelping Children Cope with Disruptive Events By Kathy Pfeiffer, RN, BSN, Area Director, Clinical Operations, BAYADA Home Health Care Summertime usually brings a lot of fun – pools, long days of sunlight, picnics and more. But it can also bring an uptick of natural...
Introducing JustSibs (Formerly SibSpace)
BLOGIntroducing JustSibs Today, we’re thrilled to announce the launch of JustSibs, a place just for pre-teens and teenagers who have a brother or sister with an illness or injury. If you’ve been to CopingSpace before, or lived through it, you know – a child’s illness...
Preparing Your Child for an MRI Scan
BLOGPreparing Your Child for an MRI Scan Magnetic resonance imaging, or MRI for short, is an increasingly common diagnostic test for the simple reason that it’s safe, effective and painless. Like an X-Ray or CT scan, it takes detailed pictures of the body’s organs and...
Describing the Sibling Grief Experience
BLOGFinding Words When Words Aren’t Enough—Describing the Sibling Grief Experience Lynn Shattuck / January 23, 2021 I was browsing Facebook the other day when I came across this question on a page I follow: What is the one thing you wish people had said to you after...
How to Help a Friend Through the Holidays
BLOGHow to Help a Friend Through the Holidays Updated Oct 25, 2023 / Published December 5, 2020 The holidays can be a time of joy, wonder and gratitude. They can also be a time of high stress, sadness, and endless logistics and errands. Add on a child with an illness...