Kidney Mom

I attended a informative and supportive conference this weekend at Goryeb Children’s Hospital, Morristown, NJ.  The speakers were Christopher Lynch, PhD, Psychologist/Coordinator Pediatric Behavioral Medicine; Tara Gleeson, MSN, CPNP, Pediatric Nurse Practitioner, Child Development Center; and Ann Stocknoff, LCSW, Pediatric Hematology Oncology Social Worker – The Valerie Center, (also a mother of a chronically ill child).

In addition, there was a panel comprised of everyday mothers coping with chronically ill children, who offered intuitive and practical information and advice, as well as inspiration for the rest of us.

The focus of the conference was the challenges faced by parents managing a chronically ill child while juggling the demands of household, spouse and other children.  Also discussed was the effect of the situation on the child himself/herself, and strategies for coping with stress.

Tara Gleeson, MSN, CPNP, reviewed the state and federal resources available for children and offered advice on how to work with the school to accommodate the needs of these unique children.

A question and answer period provided further insight into specific situations and sympathetic advice from the professionals and the parent panel.

Here’s what I walked away with:

Wow, I’m sure not alone!
I’m very lucky compared to what other families are coping with.
There are a lot of great resources available for children with special medical and physical needs.
I have to check in with my son’s school periodically to make sure everything’s up to date and we’re all on the same page.
My son should assume some responsibility for managing his condition – this will empower him!
Never give up the fight for what you believe your child needs!

If you are struggling with a chronically ill child, please take advantage of everything your local medical center offers.  Speak to the social worker and/or ask your nurse practicioner what other parents have done.  You are not alone!

My next post will include some resources and website links offered by this conference, as well as some of the sites I’ve discovered on my own.

Please let me know if you’ve come across any great support resources!

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