Unless you are the parents a doctor approaches ready to speak unimaginable words like palliative care, end of life transition, or we’ve done all that we can for your child, you may have never considered the tremendous need for a children’s hospice home.
Despite my vast medical experiences, especially in pediatrics with my son Michael, I had not. That is until now, following a meeting with Katie Lindenfelser, President and Founder of Children’s Lighthouse of Minnesota.
Consider these facts:
- There are currently over 40 children’s hospice homes in the United Kingdom, several in Canada, two in Australia and others around the world.
- In metro areas around the United States, there are over 4,700 hospice homes for adults, but only a handful that are being built and designed just for children and their unique needs.
- Currently, there are only TWO children’s hospice homes operating in the United States, located in Arizona and California but not in Minnesota.
- Given the data available, there are over 2,200 children living with a potential life-limiting condition in Minnesota that could benefit from respite care and associated services for their family.
We were one of those families, which could have benefited from this kind of children’s hospice facility. Back in 2005, when we asked the hospital where we could stay as a family about to experience the death of a child, a hotel blocks away with a discounted rate of $99.00 a night was the only option available. At that critical time, a few steps away from my son’s ICU room was too far away and the rate didn’t appear to be a discount to us, a family marred by disease.
In our last days with angel Michael, a children’s hospice home would have provided more familiar comfort as we said goodbye to our hero. My memory of my daughter Jessica, holding Michael’s hand for the last time in a hospice space like Children’s Lighthouse would have been more suitable to the infinity of that moment. A hospice home would have dramatically altered our human experiences, which seemed diminished inside the hospital medical experience.
I urge you to join the Children’s Lighthouse of Minnesota campaign. Become a beacon of hope eloquently stated on their website.
Minnesota children and their families need you to Be The Change!
