From the Imagine Pediatrics Patient and Family Advisory Council (PFAC) 

 
If your child was just diagnosed with special health care needs or you’re still waiting for answers you may feel scared, confused, or overwhelmed. That’s okay. Many of us felt the same way. 
 
We’re parents, grandparents, and caregivers who truly understand. Some of us are at the beginning of this journey; others have walked it for years, and many are still walking it every day. Together, we make up the Imagine Pediatrics Patient and Family Advisory Council (PFAC). We work together to improve care for children with special health care needs. We share our ideas, experiences, and stories to help Imagine Pediatrics better support families like yours. 
 
We chose to write this letter because we remember what it felt like. And we want you to feel supported before you even know what support you might need. This comes from our hearts to yours, with warmth, understanding, and love.  
 
We are here to tell you: You are not alone. 

It’s Okay to Feel Sad, Scared, or Angry 

When you get a diagnosis (or even just a hint that something is wrong), it can feel like your world has changed overnight. One caregiver said, “The hardest part was realizing this is real. My child’s life will look different from what I imagined.” 
 
Another said, “To this day, we still don’t know what my child has. That unknown is scary.”  
 
You are allowed to cry. You are allowed to say, “This is hard.” Being strong doesn’t mean you never cry. It means you keep going, even when you do cry. Your feelings are real and you’re not alone in them. 

You Know Your Child Best 

You spend each day with your child and notice the little things that can help others understand how to best care for them.  
 
One caregiver shared, “I kept asking questions until we found what worked best for my child.” 
 
Another said, “When I spoke up about what I saw at home, my care team listened, and we found a plan together.”  
 
You are an important part of your child’s care team. Trust yourself, share what you see, and don’t be afraid to ask questions or ask for help. Working together with your care team can make a big difference for your child. 

How Imagine Pediatrics Can Help 

Imagine Pediatrics is a 24/7 virtual and in-home care team that provides integrated medical, mental health, and social care and support to children with special health care needs and their families. They are available anytime, day or night, through the Imagine Pediatrics Mobile App or by phone. They can help answer your questions, help you get services, or just make life a little easier. 
 
One caregiver said, “I didn’t know about Imagine Pediatrics until much later. I wish I had. It would have made a huge difference.” 

Our Advice for New Caregivers 

If you’re just starting out, here’s what helped us: 

• Take it one step at a time. 
• It’s okay to ask for help. 
• Learn the words doctors use; it helps. 
• Keep notes. Write down what happens. 
• Speak up. Your voice matters. 
• Find people who understand. 
• Take care of yourself, too. 

This letter was created with help from the Imagine Pediatrics Patient and Family Advisory Council (PFAC), a group of caregivers who share ideas and tell their stories to help the Imagine Pediatrics team understand what it’s like to be a caregiver. Together, we give feedback and work on projects that improve care for children with special health care needs. 
 

We’re Here for You and Your Child 

Imagine Pediatrics is dedicated to improving the health and lives of children with special health care needs. We provide 24/7 virtual and in-home care and support. Our integrated medical, mental health, and social care is personalized to meet the needs of your child. We don’t replace your child’s current care team. We work with them to give your child expanded access to the care they need, whenever they need it. Our services are often at no cost when they are part of your child’s existing health plan benefits. Learn more about us at here or call us (833) 208-7770. 
 

Legal Disclaimer  

This information is for educational purposes only and does not constitute medical advice, diagnosis, or treatment. Always consult with qualified healthcare professionals for medical concerns. In case of emergency, call 911 or go to your nearest emergency room immediately.