Caring for a Seriously Ill Child
Taking care of a chronically ill child is one of the most draining and difficult tasks a parent can face. Beyond facing your child's physical challenges and medical needs, you will have to deal with the emotional needs your sick child may have and the emotional impact that the prolonged illness can have on the entire family. Luckily, this tough balancing act doesn't have to be accomplished alone: support groups, social workers, and family friends often can lend a helping hand.

Explaining Long-Term Illness To Your Child

Honest communication is crucial to helping a child adjust to a serious medical condition. It's important for a child to know that he or she is sick, and will be getting lots of medicine. The hospital and the medicine may feel frightening to your child, but they are part of what it takes to helping your child feel better.
As you are explaining the illness and the treatment to your child, it's important to clearly and honestly answer your child's questions, and provide the information that he or she will need to know in a way he or she will understand and can respond. The aim is not to frighten your child, but to give your child the words to communicate information and concerns to medical professionals and others.
To maintain your child's trust, it's also important to accurately explain and prepare your child for any treatments - and possible discomfort that might go with along with those treatments. Avoid saying 'This won't hurt,' if the procedure is likely to be painful. Instead, tell your child that a procedure may cause some discomfort, pain, pressure, or stinging, but then reassure your child that it will be temporary and that you'll be there to support him or her while or after it's done.
Many hospitals offer parents the choice of talking to their child about a long-term diagnosis alone, addressing the child with the doctor present, or including the entire medical team made up of doctors, social workers, and nurses. Your doctor or other medical professional may also be able to give you some advice on how to talk to your child about his or her illness.

Tackling Tough Emotions

Your child is going to have many feelings about the changes affecting his or her body, and should be encouraged and given opportunities to express any feelings, concerns, and fears. It's a good idea to ask your child what he or she is experiencing and listen to everything he or she has to say before bringing up your own feelings and explanations.
This kind of communication doesn't always have to be verbal. Music, drawing, or writing can often help a child living with a life-threatening disease to express his or her emotions and to escape through a fantasy world of his or her own design.
Your child may also need reminders that he or she is not responsible for the illness. It's common for kids to fear thatthey brought their sickness on by something they thought, said or did. It is important to reassure your child that this is not the case, and to explain, in terms that he or she can understand, what caused the illness. (You may also want to reassure your child's siblings that nothing they said or did caused your child's illness.)
For many questions your child asks, there just aren't going to be easy answers. And you can't always promise that everything is going to be fine. But you can help your child feel better by listening to his or her feelings, making him or her understand that it's okay and it's completely understandable to have those feelings, and assuring your child that you and your family are going to be there to make him or her feel as comfortable as possible.
If a child asks "why me?" it's okay to be honest, even if the answer is "I don't know." It's a good idea to follow this up by explaining that even though it's unknown why the illness occurred, the doctors do have treatment for it. (If that is the case.)
Your child may say "it's not fair that I'm sick." Acknowledge that your child is right, that it's not fair. It's important for your child to feel like it's okay to feel angry about the illness. Your child may ask: "am I going to die?" How you answer is going to depend on your child's age and maturity level. It's important to discern, if possible, what specific fears or concerns your child may be having, and to address those concerns specifically. For example, your child may be actually worried about being in pain.
If it is reassuring to your child, you may refer to your religious, spiritual, and cultural beliefs about death. You may want to stay away from euphemisms for death such as "going to sleep." Saying that may cause your child and siblings to fear going to sleep. Regardless of your child's age, it's important that he or she know that there are going to be people who love him or her and who will be there for as long as they are needed, and that your child will be kept comfortable.
Just like any adult, your child is going to need some time to adjust to the diagnosis and the physical changes he or she may be experiencing, and it's likely that your child is going to feel sad, depressed, angry, afraid, or even denial. It's a good idea to think about getting some professional counseling help if you see signs that these feelings are starting to intefere with your child's ability to function, and your child begins to seem withdrawn, depressed, and show radical changes in eating and sleeping habits that aren't related to your child's physical illness.

Childhood Behavior

Although kids with chronic illnesses certainly require extra "TLC," special medical requirements don't eliminate the routine needs of childhood. The foremost - and perhaps trickiest - task for worried parents is to treat a sick child as normally as possible. Despite the circumstances, this means setting limits on unacceptable behavior, sticking to a regular routine, and avoiding overindulgence. This may seem impossible, particularly if you are experiencing feelings of guilt or an intense need to protect your sick child. But, spoiling or coddling a child can only make it harder for him or her to readjust once he or she is ready to return to daily activities. When your child leaves the hospital for home, normalcy remains the goal. Your child may want to visit or stay in touch with friends through visits, if possible, or through email, the phone or letters.

Dealing with Siblings

Family dynamics can be severely tested when a child is sick. Clinic visits, surgical procedures, and frequent checkups can throw big kinks into everyone's schedule, and take an emotional toll on the entire family. To ease these pressures, reach out for any help you can get to help keep the family routine as close to normal as possible. Friends and family members may be able to help handle errands, carpools, and meals. Siblings should continue to attend school and their usual recreational activities; the family should attempt to provide some predictability and time for everyone to be together.
Flexibility is key. The old 'normal' may have been the entire family around the table for a homecooked meal at 6, while the new 'normal' may be take-out pizza on clinic nights. Also, you may want to talk with your other kids' teachers or school counselors and let them know that a sibling in the family is ill. Those school personnel may be able to keep a look out for any behavioral changes or signs of stress among your children.
It is common for siblings of a chronically ill child to become angry, sullen, resentful, fearful, or withdrawn. They may pick fights or fall behind in schoolwork. In all cases, parents should pay close attention, so that the siblings don't feel shunted aside by the demands of the sick child. It may also help your sick child's siblings to be included in the treatment process whenever possible. Depending on their ages and maturity level, visiting the hospital, meeting the nursing and physician staffs, or accompanying their sick sibling to the clinic for treatments can also help make the situation less frightening and more understandable.
What they imagine about the illness and hospital visits are often a lot worse than the reality. When they come to the hospital, hopefully they'll develop a more realistic picture and see that, while unpleasant things may be part of the treatment, there are also people who care about their sibling and try to minimize discomfort.

Lightening Your Load

Although no magic potion exists to reduce the stress involved in caring for a child with a long-term illness, there are ways to ease the strain.
Break problems into manageable parts. If your child's treatment is expected to be given over an extended time, view it in more manageable time blocks. Planning a week or a month at a time may be less overwhelming.Attend to your own needs. Get appropriate rest and food. To the extent possible, pay attention to your relationship with your spouse, hobbies, and friendships. Depend on friends. Let them carpool siblings to soccer or theater practice. Permit others - relatives, friends - to share responsibilities of caring for your child. Remember that you can't do it all. Ask for help in managing the financial implications of your child's illness.Recognize that everyone handles stress differently. If you and your spouse have distinct worrying styles, talk about them and try to accommodate them. Don't pretend that they don't exist.Develop collaborative working relationships with health care professionals. Realize you are all part of the team. Ask questions and learn all you can about your child's illness.Consult other parents in support groups at your care center or hospital. They can offer information and understanding. Explore support groups for parents who have children with the same or similar illness. Keep a journal. Utilize support staff offered at the treating hospital.