Family Matters

Family Matters

Online Resource: Information on having a conversation with your seriously ill child about his or her medical situation  Conversation Project

Article: Business Woman Magazine: “Pediatric Hospice: Specialized Care Supports Both Children and Families” Pediatric Hospice Specialized Care

Caregiver Library Project in Allegheny County – The Allegheny County Department of Human Services/Area Agency on Aging Caregiver Resource Committee in with collaboration of several other agencies has developed a caregiver backpack filled with resources. For more information Caregiver Library Project

Paper Clouds Apparel – Paper Clouds Apparel produces apparel featuring art done by individuals with special needs. Half of the profit goes to an organization of the person’s choice, and the other half goes back to support the organization which employs individuals with special needs. Paper Clouds Apparel

Summer Fun! – Parks, Playgrounds and Programs Across PA for Kids with Special Needs Check out these opportunities for your child with special needs to have fun this summer all throughout PA!  SummerFun

Casey Cares Foundation – We provide programs to critically ill children and their families in the Mid-Atlantic area including tickets to area attractions, the circus, Disney on Ice, sporting events, movie nights out (or in for children who can’t be out) group parties, new pajamas… activities that can help families take their minds off of illnesses and give them a break for an afternoon or evening.

The New Normal: Family insights and tips on pertinent health care issues

When You Can’t Fix It
By Fred Neal, Father and Family Needs Adviser for the organization, Reagan’s Journey

When I was a kid, I did everything I could to get out of helping my dad work on things around our home.  As a teenager, I found the most effective way to get out of helping him work was to just have horrible enough of an attitude that he’d rather do it himself than have to be around me.  If I was really on my game, I could usually get him to send me away after about 10 minutes of just being the most miserable person I could be.  As a result, I entered in to manhood not knowing how to fix many things.  I became a husband, dad and a homeowner in my early twenties and was amazed at how many things could break around me that I was responsible for fixing.  Read More

Random Thoughts on Transitioning a Medically-Fragile Child to Adulthood              By Jeanne E. McMullen

My family had a great deal of anxiety and sadness as we approached the age of transition into adulthood.  After 18 years of frequent inpatient and outpatient care, we had developed a sort of love/hate relationship with Children’s Hospital.  Though we often looked forward to the day we would never have to return, there was no denying the facility was our safety net.  We couldn’t imagine going anywhere else.  Read More

I Think My Child Needs In-Home Nursing… Now What?
By Elisabeth McNulty, Pediatric Family Support Specialist – Bayada

Having  a chronically ill child is hard. Really hard. It affects your entire family, who must adjust to their “new normal.” As a caregiver, your days are consumed with making phone calls, going to doctors’ appointments, managing therapies, giving medicine, advocating, and caring for your sweet child who can’t care for himself. Although the love you carry for your child far surpasses the chaos of your all-consuming medical life, eventually, you feel worn. Sleepless nights and ever-busy days can wear on even the strongest of human beings, leaving them feeling drained, overwhelmed, and a bit lost. But it doesn’t have to be that way; there is help.  Read more

Sharing Family Stories

Click on the names below to read about the personal journey of each family.