In this week’s episode of The UpBeat Podcast, powered by CoachArt, co-hosts Greg and Roxanne chat with Lacey, whose 10-year-old son Levi is one of CoachArt’s newest members.
At just 3 days old, Levi was diagnosed with craniosynostosis and cleft palate. Since then, Lacey and her family have experienced all the ups and downs that living with a chronic illness entails, without a community of like-minded parents and families … until she found us here at The UpBeat! Now Lacey’s ready to share some advice and stories about how her family has navigated the journey of Levi’s illness, including its effects on his schooling, his friends, and his parents.
Lacey has lots of insightful info, including her top three tips for families with children who have recently been diagnosed with a chronic illness:
Bring a friend
Learning of a chronic illness can be overwhelming and there will be mountains of information coming at you quickly; it’s hard for one person to take it all in. Bringing along a family member or close friend to doctor appointments will not only provide emotional support, but another set of ears will pick up things you miss and give you a much-needed sounding board later.
It’s natural to want answers immediately to all the questions that arise for you, your child, and your family. But sometimes, you’ll just have to wait for some. And that’s okay! There’s a lot going on and everyone is doing their best — managing your expectations about the quickness of the process is important.
Trust your doctor
While this is all incredibly new for you, chances are it’s not for your doctor. Listen, ask questions, participate, but also remember that your doctor is an expert and is doing their best to make your child well again. As Lacey points out, it’s more likely you’ll have an error in communication or understanding with your doctor than it is for your doctor to be incorrect. So pay careful attention to what they’re saying and have faith that they’re doing everything they can to help.
Equally critical is being able to understand well enough to answer your child’s questions. Lacey talks about the amazing support she received for Levi through Yo Lo Tengo, a 7-week therapy program offered at Children’s Hospital Los Angeles. Working with CHLA’s craniofacial team, he learned communication skills and techniques that will help him deal with situations he may encounter as a result of his illness. Levi graduated from the program on May 19.
Lacey also touches on the importance of self-care and maintaining a healthy relationship with your partner. Listen to Lacey’s interview below.
The UpBeat podcast is powered by CoachArt, a nonprofit organization that provides FREE art and athletic activities to families impacted by any childhood chronic illness – such as arthritis, asthma, diabetes, cancer, cerebral palsy and more. Programs are currently offered in the Los Angeles, San Diego and San Francisco Bay areas, with more cities coming soon!