When my daughter was born with a genetic condition and a heart defect, my family was overcome with support. We were met with the typical newborn baby gifts and greetings. Then support went above and beyond the norm. We received numerous meals, cards of encouragement, monetary gifts, and personal visits. Our family felt loved. Her initial diagnoses were a shock, and the outpouring from others was beneficial. We needed support, and we received it.
In thirteen years, my daughter’s list of medical diagnoses has grown, as well as the number of surgeries and hospital admissions. It often feels like we move from health crisis to the next with weeks or a few months between episodes.
While parenting a child with chronic health conditions, the amount of support my family has received has varied. I have experienced a flood of support, a complete lack, and everything in-between. It’s understandable that others can’t keep a high level of support long-term. People have their own lives and families that need attention. They also have their own problems that require energy. Church clergy have other parishioners that need counsel. In general, people have busy lives.
Support systems are important. Texts from friends help. In-person prayer is encouraging. Knowing people care does make a difference. However, other people can’t be my only source of support. They can’t meet my every need and won’t always be around. At the end of the day, I am often left with only myself.
When my daughter’s breathing suddenly worsens and I’m home alone, there is no one there to calm my nerves. When alarms are going off at 2 A.M. in the ICU and my husband is traveling with work, I have no one there for me while I comfort my daughter. When I try to fall asleep at night, but my mind is replaying events from the day, it’s up to me to break that cycle of thinking.
Support from others is great, but I learned early on that I have to find ways to encourage myself. I have to take ownership of my own mental wellbeing and emotions. When I am feeling down, I can’t rely on others to pick me back up. I can’t wait for my pastor to show up to pray; I have to find strength to pray.
Source: Special Needs Parenting- Key Ministry
