For the heroes behind the heroes, Part 1

A mother's day message from a mom, to all moms

Marianne and Mary Rose Takacs

Marianne and Mary Rose Takacs

Let me start off by saying, from one mom of a former patient to the moms of present day patients: I wish you a Mother’s Day that fills your heart with laughter and joy and all the good things it can hold, to carry you through your journey.

You hold a vital role in the life of your child, and of your family, and you are doing an excellent job!

You have an equally important responsibility, however, to “Take care of you.”

Before you dismiss the thought with an “I don’t have the time nor energy to take care of me,” response, let me share a little about how important you are and the necessity of taking time out, even for a bit, just for you.

Our family’s journey went on for five long years, with many ups and down, a whole lot of tears, exhaustion, fear at times, and definite frustrations along the way. It was only through accepting kind and generous offers to give me some relief and respite, that I found I was beyond depleted as I struggled to care for my child and family.

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Little changes to make a big difference

Working together to change the experience for families of children with Down Syndrome

March 21 was Down Syndrome Awareness Day.  In celebration of all our “Little Victors” with Trisomy 21 and their families, we interviewed Emily Campbell, mom to the very charming Teddy, and an active volunteer in our Patient and Family Centered Care Advisory Program.

How did you come to be involved in our patient and family centered care programs?

emily campbell ann arborMy son Teddy was prenatally diagnosed with Down Syndrome at the Fetal Diagnostic Center at University of Michigan Von Voigtlander Women’s Hospital.  At the time, I felt like I was really supported – people were really helpful and I was well taken care of.  I felt like at the Fetal Diagnostic Center I was given the space to make a decision on my own about what decision was right for my family. But as I got more involved in the Down Syndrome community, I found that not everyone was getting that level of support when they are given this diagnosis.  So I became interested in helping shape how this diagnosis is given so it’s not just presented as a list of potential problems.  I wanted to help shape that conversation a little bit more.

What are some ways you’ve been able to do that?

Mostly I tell my story – Teddy’s story, our story of what happened for us.  For the past 3 years I have been speaking to the medical students entering their 2nd year of med school in a session called “Breaking bad news.”  Each semester I also talk to an undergrad psychology class of students preparing to go into social work or other health careers.  I’m also frequently asked to speak with other social work classes or other groups around campus looking to have a patient / family story told.

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