People who are not dealing with a child with life threatening issues often want to know what they can do to be supportive. The greatest gift you can give is time. Provide help in the practical areas; bring a meal, do the laundry, walk the dog, watch the other kids. These will almost always be welcome. I would also caution, however, to recognize there are areas where your help may not be welcome. Some things a parent has to deal with alone.
A parent needs a strong base to handle the overwhelming responsibility of caring for a sick child. Even a house of cards will stand if there is a strong foundation. All four corners of the foundation, including financial resources, physical, emotional and spiritual strength have to be in place. A breakdown in any one of those areas can bring the entire house of cards tumbling down. Having extra help in one corner can give the parent the break they need to concentrate on the areas where no one can help.
A parent has to find the resources and the physical strength to get the job done. These are the areas where help is likely most welcome. The financial drain on a family dealing with a catastrophic illness is enormous. Insurance and programs are essential, and the energy it takes to deal with both is draining. Even when those fights are successful, there are so many additional costs that the financial burden can itself be overwhelming. Resources can make the difference in a child’s life. The type of physical strength or stamina required varies depending on the issue your child faces, but whatever physical demands are on the parent or caregiver, they have to find it within themselves or arrange for others to step in. Do not underestimate the gift of time. Providing a meal not only nourishes a family, but also saves the time of shopping and cooking.
The other two areas, emotional and spiritual, are harder to quantify because each individuals make up, and belief system vary. The only absolute is uncertainty. Helpful actions in these areas are likely more passive. A rock to lean against and a shoulder to cry on are helpful, but pity and judgment are not.
Handling the emotional aspects is difficult, at best. Everybody has a different way of doing things. Some arm themselves with information and facts to keep the fear of the unknown at bay. They become “experts” in handling their child’s condition. Some are in denial and cannot accept the issues their child faces while others become angry or withdrawn. Parents often learn to balance the harder emotions by finding the joy and beauty in small accomplishments or details. All of these are perfectly valid. In fact, when a child is in crises, it is not unusual for the parent to feel all of those thing, expertise, denial, anger, and joy several times each day. If outsiders find it unnerving to deal with so many emotions, they should try it from the parent side. It is a hurricane of emotions and every emotion has its place. Allow the parent leeway and freedom to experience the emotions. Avoid telling a parent to feel happy and stay positive, or worse that they need to be realistic. They know. Sometimes the best help in this area is to let them know you care and are available if they need you.
The spiritual is the most personal of all, because it involves the deepest values and meanings by which people live. Yet, ironically, it is the area most susceptible to judgment and ridicule by others. Parents find themselves at sea while they figure out this corner of the foundation. It is a personal journey but parents are often showered with platitudes that may or may not be of assistance. Instead of being helpful, this actually puts an additional burden on the parents. Perhaps it is difficult for others to accept a belief system different from their own, but respect for a parent’s belief system is the most helpful thing you can give.
A child’s diagnosis with a life threatening condition forces a parent to figure out what they believe and whether that helps them cope and carry on. For some, the spirituality piece is easy. They know what they believe. For others it is the hardest of the four corners to get into place.
Spirituality is what an individual believes about life. It may or may not include religious beliefs. Some people have a hard time with this concept, especially if they are religious; for many spirituality is specifically tied to religious beliefs. If one has a specific Religion, the framework they know may provide comfort and guidance. That is true for me, but I know it is not true for everyone. Some who have never been religious in their life suddenly discover it as a way to help them through the dark. It is not uncommon, though for parents to lose or abandon God or their religion when faced with the prospect of losing their child. They cannot find the comfort they need in that belief system and they alone need to figure out what works. If a parent seeks your input, give it to them; but if they do not you might want to wait. Because it is so intensely personal, unsought guidance or advice, however well meaning, is often unwelcome resulting in hurt feelings all around.
If you are in a position to help a parent coping with their child’s life threatening condition, consider how and where your help will be most welcome. Remember the gift of time because it helps to shore up all four corners, even the ones the parent has to figure out alone.
Thursday, October 6, 2011 at 9:29AM 