Probably one of the most difficult things to deal with in life is the illness of a child. We as parents are their protectors and when an illness takes over we feel incredibly helpless. Dealing with a chronic illness or even life threatening illness is never something any parent is prepared for.
The first step is to digest the ‘diagnosis’ yourself. You will have to completely understand the illness and how it will affect your child as well as the rest of the family (i.e. siblings, etc). Do not be intimidated by medical personnel and be proactive in your child’s care. Be diligent in your research. Doctors are not perfect, when the circumstances warrant, always get a second opinion. When the illness is confirmed, move on to the next step. Many times when dealing with an illness of a child, a parent may go through some of the stages of grieving (denial, anger, bargaining, acceptance). In essence, although your child has not passed, the hopes and dreams that you had for your ‘healthy’ child may have indeed passed. Unfortunately, as when someone does pass, you will not have the time to deal with these emotions because your child is still here and will need your strength.
So how do you communicate this illness to your child? The one thing to keep in mind is that if its mind blowing to you as an adult, it will be totally overwhelming for them. Try to spoon feed the information to them. Give them little bits of information at a time rather than putting too much on their plate. Explain as best you can and don’t be afraid of any questions that they might have. If answering their questions might be too much for that time, just assure them that you are with them every step of the way and that you will go through this journey together. What will be coming out of your mouth will be words that can translate into fear so they will need absolute assurance of your love and safety that they are not alone. Be continually aware of your child and read their signals. They may be communicating that they are ‘fine’ and that they ‘get it’ but may be imploding or withdrawing not knowing how to process this information. Body language says a lot, keep a watchful eye. On the other hand, they may be totally bouncing off the walls and acting out. Either way, remember that you do not have to go through this alone. Unless it is truly a rare disease, others have gone through this before you, seek out a support system.
Once your child understands their illness and treatment you will have to be patient and let them process the information and emotions that go with it. This will vary depending on the age and maturity of the child and the extent of their illness. They will also go through the grieving stages, as they slowly comprehend that their life as it ‘used to be’ is no more. This will be a heartbreaking time for you because there is nothing worse in life than seeing someone you love in pain especially a child who looks to you as their protector. Again, do not try and deal with this alone. This is the time when you will need your family and friends. If they are not available, then seek out support groups in your area. Your doctor or specialist deal with other families that are coping with the same illness so they should have resources that would be available to you.
There is no cookie-cutter handbook for parenting and certainly no exact instructions for dealing with this kind of situation. There are insurance companies to deal with, hospitals, treatment centers, various medical personnel, medications; the list will go on and on. Don’t beat yourself up when you just don’t know what to do. You just keep supplying the love and assurance that your child needs. No matter what the circumstances on any given day, you continue to put one foot in front of the other even when you are not sure of where you are going. Above all, make sure that your child’s hand is securely locked in place with yours as you walk through this journey together.
Read on at AboutTheChildren.org or call us at (800) 787-4981