Caring for a sick child often causes guilt. Do you ever wonder if you did something wrong and now your child is paying the price?  

• Chances are, you did all you could to give your child the best start in life.  
• It’s not your fault if things didn’t turn out the way you’d hoped.  
• Even if you have regrets, it doesn’t help your child to worry about what you wish you could change about the past. This can cause you harm as well. 
• Try to let go of the guilt and move forward. Do the best you can now. Some things are beyond your control.   

It can be hard to be around families with healthy children your child’s age. It can highlight the differences between where your child is now and where they could have been without chILD. 

• Don’t expect your child to learn and grow at the same rate as others.  
• Children with chILD use extra energy to breathe. They may get tired faster when trying a new skill. 
• Your child may need more practice than others.  
• Delays in learning and growing may cause you to feel sad. 

One parent chose to see it this way: “Sometimes they creep and crawl in small steps along the path of life, but so do caterpillars and look what they become.”     

Having a child with special needs can make it harder to enjoy the social life you once had. Friends and other parents may not understand what you’re going through. 

• Try to ignore thoughtless comments and pesky advice that may come from others. 
• Find people and activities that make you feel happy and supported. 

It can be scary to think about the future when your child has a chronic illness.   

A parent once said, “…parents just want to know what lies ahead for their child as they live with a chronic lung disease.  Will they make it to kindergarten?  Will they make it through high school or college? Will they marry and have children?  Will they even make it through the night?”  You may be scared, thinking, “What if the worst happens?  How will I cope?”   

• Counselors trained to work with parents of chronically ill children or the death of a child can help provide support. 
• It can also help to connect with other parents of children with chronic illness. They may be able to provide support and advice about how to cope. 
• Plan ahead.  Look ahead for curves in the road and create a Plan B (and a Plan C!).  The more prepared you are for whatever the future holds, the less fearful you’ll be.     

Grief is a normal response to the loss of something we value.  When a child develops chILD, everyone grieves!  Parents grieve over the loss of how they hoped things would be.  They grieve over the loss of their lifestyle.  People grieving can be angry, crabby, edgy, or nervous.  They can be sad or teary.  They might feel tired or heavy.  It might be hard for them to stay focused, and they might forget things.  They might yearn for what they’ve lost or think about the past a lot.  

Taking care of yourself is one of the best ways you can take care of the ones you love.     

• Set aside time every day to read something you like. Phone a friend, play some music, chat on-line, or do something else that’s calming.  
• If you can, hire a sitter every week or two and treat yourself to time away.   

• You may have to limit yourself to one or two sitters that have the extra training needed to safely care for your child.  You may have to train them yourself, but it’s worth it.  Treat yourself to a meal out, a movie, time with friends, or even the chance to run some errands alone.   
• This is a link to a sample babysitter checklist:  https://www.care.com/media/cms/pdf/Checklist_SpecialNeeds.pdf  

• Another option is to get your body moving.  The hormones released during a workout can boost your mood.  If you can’t get to the gym, try taking a brisk walk (even if it means pushing a stroller), using a workout video, or doing simple stretches and sit-ups on the floor.    
• Social workers, counselors, and ministers can be helpful resources.  
• Sometimes the best moral support and most helpful advice comes from other moms and dads who have dealt with chILD.   

Despite these measures, many families still feel stress, guilt, sadness, fear, and grief. A mental health professional may be needed to help process all of the changes your family is facing.