Marian Harder is no stranger to hospital stays. The Menominee, Mich. native was born in Marinette, but at 10 days old was taken to HSHS St. Vincent Hospital for a sweat chloride test – the standard test used to diagnose cystic fibrosis (CF). It was that test that confirmed that Marian had CF.
The Harders were thankful to learn that there was a pediatrician trained in managing CF in Green Bay, Dr. Peter Holzwarth
, which is an hour drive from their home in Menominee.
“Dr. Holzwarth understands the differences between the people that have CF and how it can be lived out in a very different way with every patient,” said Marian’s mother, Abbey Harder.
Since August of 2014, Marian has been hospitalized at HSHS St. Vincent Hospital five times. Her hospitalizations range from a week at the very least and sometimes up to 10 days.
“Over the last two years, her health has somewhat declined. We’ve been finding a new normal with health limitations,” describes Marian’s mother, Abbey Harder.
But for Marian, going to the hospital isn’t all bad. She’s made friends with the Prevea Child Life Specialists at HSHS St. Vincent Hospital.
“She loves to do the crafts and it’s a chance for her to have someone come in the room and not focus on her being sick and we know they are an encouragement to her,” said Abbey. “One of the primary things that Child Life adds is it is someone who can just come and play and know what the rules and health restrictions are that visitors might not be aware of or heed.”
Child Life is a free service available to all children, teens and young adults at HSHS St. Vincent Hospital. Child Life has specialists who are certified and trained to help children and families cope with health care experiences. A Child Life Specialist helps prepare children for medical treatments and procedures using age appropriate explanation and medical dolls and equipment to increase the child's understanding of what they will experience; but will also provide distraction and support during your child’s tests and procedures using toys, deep breathing and visualization.
Home away from home
The Harder’s have two sons in addition to Marian. Marian is the oldest of the three children; William is 7 and Ewan is 5. With Marian being the oldest, CF has always been a part of their lives – they’ve always seen her taking the enzymes and vitamins; and they’ve always seen her wearing the vests and doing the nebulizer treatments. But the way the Harder boys are most impacted is when it comes to hospitalizations. It’s tough on the whole family.
“The hospital visits affect them as well, because their lives get turned upside down. But, after five hospitalizations, we have found out what works, and what doesn’t,” said Abbey.
Although the Harders live in Michigan’s Upper Penninsula, the drive to HSHS St. Vincent Hospital from their home is still only one hour. For that, the Harders are thankful.
“The whole team just supports us in a way that I couldn’t ask for a better way for them to support us. It may be an hour away, so it’s not super convenient; but it’s only an hour away, so it’s not terrible,” said Abbey. “Since we live in Michigan, I have had insurance companies call me and say that we need to go to Grand Rapids for care and I say they’re nuts! HSHS St. Vincent Hospital has been absolutely wonderful. They go up to bat for us when I have insurance doing things that I don’t understand.”
"The whole team just supports us in a way that I couldn’t ask for a better way for them to support us. It may be an hour away, so it’s not super convenient; but it’s only an hour away, so it’s not terrible,” said Abbey."
The Harders have learned to live day by day.
“The disappointments are a part of our lives. I’ve learned as a parent to not tell the kids about our plans until I have to – we have a lot of surprises,” said Abbey with a chuckle.
But the Harders also rely heavily on their faith and knowing that God is looking out for Marian.
“Her health is in His hands and we trust Him to do what He feels is best. Whether that’s a shorter life for her or not, we have that all in perspective, and that it’s all in His care.”