At the beginning of June, I spent a long weekend at camp with forty sets of parents, their kids with special needs, and their typically-developing children, too. During three days of observing and interacting with families, I noticed several common characteristics. Whatever their children’s ages or diagnoses, these nine characteristics rang true for almost every parent at camp.
- They are isolated. Not by choice, but by circumstances that make getting out of the house difficult. Such as lack of understanding by the general public, hard to manage behaviors, medical conditions that require oodles of equipment, obstacles due to mobility, and financial hardships.
- They are problem-solvers. Even though the camp was handicapped accessible and every child with special needs had a one-on-one buddy, challenges popped up now and then. But dads and moms found creative ways to overcome them. Even better, other parents stepped in and brainstormed solutions with them.
- They are sleep-deprived. Many of their kids sleep poorly or need medical monitoring, so parents haven’t had an uninterrupted night of sleep in years. Somehow they keep going, but I came away from the weekend thinking that a perfect Christmas present would be for someone to volunteer for night duty so they could sleep nonstop for 12 hours.
- They are hopeful. Not Pollyanna hopeful, but realistically so. They believe their kids have a valuable and necessary purpose in this world. They may not know what the purpose is yet, but they believe it exists. And they parent their children in the sure and certain hope that the world is a better place because their kids are in it.
- They are grieving. During the morning speaker sessions, grief was defined as the space between what we think life will be like and what life is really like. Heads nodded vigorously at this statement as each parent in the room realized that they will always live in that space. Tears were shed, and plenty of them, but the mood of the room was not one of despair. Rather it was one of shared understanding and compassion.
- They are persistent. These parents do not quit. Ever. They keep looking for a way forward. They keep looking for resources. They do not stop. They do not give up.
- They are effective advocates. Partly because they are persistent (see #6), but mostly because they love their children. Their love is fierce and unending, sacrificial and holy. They know they are their children’s voices and that their children deserve to be heard.
- They are transformed. Over and over parents said they have been transformed by their children with special needs. They said they were stronger, sadder, more resourceful, more grateful for the small things, and more compassionate toward others who struggle in life.
- They are living the gospel. No one said that in so many words. But by their constant acts of service for their children, they were being the hands and feet of Christ. Their hope, perseverance, joy in suffering, and sacrificial love for their children testifies of the Holy Spirit at work within them and of the world yet to come when all things will be made right. Now, I wonder, how can I be the hands and feet of Christ to them?