My husband and I have a nine-year-old daughter who was born with a collection of fluid in her brain. The fear we felt at the time of her diagnosis was beyond words.  I don't think I would have been able to cope  without the help of two friends whose children were also patients of my daughter's neurosurgeon.  The fact that they trusted the surgeon's abilities was my lifeline to sanity.  My daughter's pediatrician also gave my phone number to another parent in our situation and a comforting call from another mom eased some stress as well. 

So, first and foremost, I believe that networking is a MUST at the beginning of the long and scary road parents must face when their child is diagnosed with an acute or chronic illness. 

Another real important point to remember is that coping is an ongoing process that we parents master well at times, and fail miserably at during other times.  It is absolutely normal to fear losing a child, to feel anger and guilt, and to mourn the loss of that healthy baby every parent hopes for. 

My greatest weakness is doubt.  On the night before my child's surgeries I doubt everything - our judgment in giving consent for the procedure, the basis for the surgeon's decision, even God at times.  I have told parents I've met along the way that doubt is common and it's greatest enemy is knowledge and trust.  I have learned that avoiding asking even the silliest question about my daughter's surgical procedure feeds my doubt, but that it seems to diminish when I have the courage to ask away.

I have also learned to write a list of questions that pop into my head between visits to the neurosurgeon and to offer my input regarding my child during examinations.  A really great physician will honor the fact that nobody knows a child better than his or her parents do and listens to what they have to say. We have a really great physician.  Trust is only completely possible once parents feel informed and believe that they are a vital part of their child's treatment team. 

As another way of coping I entertain denial on occasion during the illness' quieter times.  My denial (which still surfaces even after 8 years of dealing with my daughter's shunt) usually rears its head after a long, tiring run of stress, fear and anger over her health issues.  I have learned to welcome denial as a time to regain energy and strength.  I am careful, however, to put it to bed after too long and get back to the reality of my child's life.

Thanks for taking the time to visit my page. Lynn