Not too long ago I stumbled upon a resource created  by the National Association of Children’s Hospitals and Related Institutions (NACHRI). Their association has compiled a list of children’s hospitals around the world. If you’re the parent of a child with a chronic or critical medical conditions, this could be a great help for you. Search the List at the NACHRI Website You’ll...

Thanks to Victoria Miller, who sent me a message through Facebook, I have new friend. Victoria is the founder of the Trisomy 18 Foundation, which provides support for families of children who are diagnosed with Trisomy 18. She emailed to say she discovered my book, A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children, on Facebook and has been giving it...

A few months back, some Different Dream blog posts ( Part 1 and Part 2) featured Justin and Victoria Nelson, along with their adorable little girl, Moriah. Earlier this week, the doctors met with the Nelsons and gave them some sobering news. Today, Moriah has a cardiology appointment and an echo, which will be very telling and could lead to some hard decisions for her parents and the doctors. To read...

If you’re the parent of a child diagnosed with special needs, you know how hard it is to remember stuff. You need to remember doctor’s appointments and recommendations, medication dosages, reactions to medications, food allergies, behavioral issues and a whole lot more. Care Notebook But sleep-deprived, stressed parents can’t remember all that the stuff without help. And that’s...

One overriding memory drove the writing of A Different Dream for My Child. Every time I thought about our weeks and months in the hospital with Allen, the sense of isolation and confusion that overwhelmed us in 1982 came rushing back. Thank You, Google Alerts So when the opportunity arose to write this book and break down the walls of isolation around other families, I was overjoyed. But writing a...

In the previous post, I explained the important role breast feeding played in our newborn son’s recovery from surgery immediately after his birth. In this post, I want to assure those of you who aren’t breast feeding for whatever reason, I am not trying to burden you with guilt or judge you in any way. That said, I encourage moms who want to breast feed, even if their newborns are struggling...

What about breast feeding? If your newborn is in neonatal intensive care, that’s a question you should be asking. Our son’s story tells you why. And it explains why I’m the proud owner of an early 1900s vintage breast pump. Allen’s Story When Allen was born with an esophageal birth defect, he couldn’t eat through his mouth for several weeks. “But what about breast...

Who would you call if  your child was seriously injured or diagnosed with a critical illness or chronic condition? Your spouse? Your parents or siblings? Your closest friend? People who are extremely close to your child need to be contacted, but they might not be the best first contacts, especially if they tend to respond emotionally. A good first contact person is someone who meets several of the...