We were lucky to always be on the same page.
The mom of a daughter with Sanfilippo talks about how she and her husband have done it together, talking, communicating whenever, at any time, about the difficult things -- made possible also by their daughter. "Children have such a great way of living today. It helps to live in the day." No more 5-year plans!
The division of labor is really important.
Grief counselor Nancy Frumer Styron discusses the importance of a couple recognizing the division of labor and the role each parent plays. A father shares his struggle with having to leave his son every day to go to his job, but accepting his role as provider.
Child illness impacts a marriage in different ways.
Grief counselor Nancy Frumer Styron discusses the many ways that child illness impacts a marriage -- practical, logistical, emotional, financial stresses -- and how parents can differ in how they respond, and the strain these differences put on the marriage. A couple shares the different ways they are coping. A mom shares how a divide developed between she and her husband around the care of their son with cancer.
You decide where you want to be.
A father of a medically complex son with multiple progressive disorders (now age 18) shares how he has struggled over the years -- his resentment, his anger, his frustration, his inner conflict – and how he eventually came to be at peace with his situation and made his choice … to stick with it.
I wanted Stuart to stand on the cliff with me and he had a different strategy.
The parents of a son with SanFilippo Syndrome discuss their different responses to the diagnosis and coping. It took us a long time and it’s still not always easy. It’s hard because we don’t grieve at the same time and in the same way.
It’s important that information get shared.
Grief counselor Nancy Frumer Styron discusses how parents might have different medical knowledge -- either knows more already or spends more time with doctors during the care -- and how important it is that this information be shared. The medical team needs to share the information with both parents and not burden only one parent with all of it.
Creating a safe place for each person to express their feelings.
Grief counselor Nancy Frumer Styron stresses the importance of parents having a safe place to honestly share their feelings with each other and how a therapist can help with this. A couple talks about the role that marriage therapy played in helping them get through their daughter's illness and death. A mom discusses the divide between her and her husband and how counseling would have helped the process.
We go see someone. It’s not marriage therapy. It’s life therapy
Parents of a 22-month old with leukodystrophy and 6 other children share how they've learned to communicate about all the stressors, and how they have benefited immensely from marriage therapy. "If you want your marriage, you need to fight for it .... and get help."