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Parents Helping Parents: Starting The Journey With a Medically Complex Child

Parents of medically-complex children remember it well – the beginning of their journey with this diagnosis. With conversations of needing DME, supplies, therapies and homecare nurses, it can seem overwhelming – but it’s important that parents new to this journey know they aren’t alone. Many parents have walked down the path they are starting on, and can provide some valuable and relieving advice.

In this edition of Parents Helping Parents, we asked these experts what advice they would have for someone starting the journey with their medically-complex child. Are you the parent of a kiddo who just received a complex medical diagnosis? Read on, print this out, and remember there is a big community of parents with tips, tricks and advice. Do you have more advice? Leave it here for us to pass along to others just starting their journey.

What is your best advice for someone starting out their journey with child who has medical complexities?

  • “Like Dori says in Finding Nemo, “just keep swimming”
  • No matter how self-reliant you have been in the past, no matter how badly you want to take care of everything yourself, you will need help. Learn to say yes when it is offered.
  • I know for me when our family started our journey, we did all the research possible. Then talk with the hospital’s Family Advocate – they will steer you in the right direction and connect you with some great support people. The number one thing is to talk to other families! They have been down that road already or you can go through it together. Don’t close yourself up and think ‘I can do this myself’ because you will get burnt out fast. Best of luck and if you need a person to listen, families are here.
  • Remember the journey is a marathon and not a sprint. Taking care of yourself will help you be a better parent for your kiddo.
  • Always remember you are not the reason some things happen. Hold your wee one and just love them. I recall blaming myself and not being able to grasp it all. Then I realized it was not my fault, I hold him and love him and take it one day at a time.
  • Make the doctors listen when you think there is something going on – mommy and daddy know baby best.
  • Remember that things can always be worse. When your child is alive it’s always a good day!
  • The doctors are not God. They say things to prepare you for the worst, but they are not God.
  • It can become much more complex as time goes on and they get older and you learn new diagnoses… so have an open mind, no expectations, and just roll with it.
  • Don’t be afraid to ask for help and support!
  • Take one minute at a time… sometimes that’s all you can handle and that is completely okay.
  • Treasure the little things, have a sense of humor, and take care of yourself… rest every chance you can. And don’t be afraid to ask for help.
Originally published: February 21, 2014