Defeating Denial

“I believe we're all in denial about the people we love.”  David Geffen

Freud defined denial as a human defense mechanism that arises when a person is faced with a certain fact that is too painful to accept, and who then insists that it is not true ... despite overwhelming evidence to the contrary.  

Another way to think about denial is that we simply stick our head in the sand so that we don't have deal with our problems.  

Sound familiar?  

Many parents reach a state of denial when their child is diagnosed with a chronic medical problem.  While they know that their child is different, they want to believe that it will pass--that the child will "out-grow" the symptoms. But we know the truth.  As painful as it may be.  Our child will forever be different.

Denial is also the first of the five steps defined by Elizabeth Kulber-Ross in her renowned grief loss model.  The denial step is followed by Anger, Bargaining, Depression, and finally Acceptance.  She hypothesizes that a person must pass through each step if they are to achieve long-term peace.

You would be amazed how many people spend their lives struggling to get through the denial stage!

When you get stuck in the denial stage, it not only impacts you ... it holds others back as well.  And when a parent is in denial about their child, their decision-making can be impaired.  If they have not accepted that their child is disabled, they fail to advocate for the child.  In today's complex health care world, advocacy is a vital component in identifying and securing the critical support services needed to maximize the child's health and life potential.

I went through the denial stage when Melissa was diagnosed with propionic acidemia and that she had brain damage resulting from her hyperammonia-induced coma at four days of age.  But it quickly became apparent to me that her health (maybe even her life) was going to be in my hands once she came home from the hospital.  That is because this disease is treated with "diet management".  We were required to concoct a special formula for her, the recipe for which varied depending on her health status.  We had to walk a fine line.  The formulation would restrict her protein intake (the very fuel of life). If we gave her too little protein, she would not grow.  If we gave her too much, she would become violently ill and head to the hospital where she spent painful weeks while they "regulated" her system.

If I had been in denial, then I would have refused to accept this important role and there is no doubt in my mind that her long-term outcome would not have been as successful as it has been.  Embracing this role was critical in personally accepting that she was, indeed, inflicted with this life-threatening disease. 

Denial can also be a relationship-killer.  When one parent moves through the grief process and the other gets stuck, tensions rise.  The accepting parent seeks out the best care for the child.  The denying parent objects, seeing no reason why such care is necessary.  The denier may even resist the child's medical diagnosis--which is critical in obtaining the proper care.

While I had moved from denial toward acceptance, my wife Kathy got stuck along the way in the depression stage.  She blamed herself for Melissa's condition.  And each time that Melissa got sick (something that was common and unpreventable) she would blame herself.  I have to admit that each time Melissa became ill, I too searched for something (or someone) to blame.  But soon it became apparent that only the disease was to blame.

Over the past 20 years we have met many parents who are struggling with a journey similar to ours.  We watched as they struggled, remembering how we felt when that happened to us.  And sadly, we have seen many marriages end in divorce.  And in virtually all of these cases, I suspect the root cause was that one (or both) of them were stuck in denial.

When asked how we survived, I offer up a few tips.  

Denial - Not a River in Egypt.  Writer Mark Twain made this line famous, but it is so true.  Denial is a real human condition.  A natural thing that we all encounter.  But to defeat it, you must understand that it exists and make the personal decision to overcome it and move on.  Talk about your feelings with family and friends.  If you are a spiritual person, pray for the strength that you need.  And if all else fails, seek professional help.  We did.  And it works!

Don't Give Up.  Have a heart-to-heart discussion with your spouse.  Talk about the impact that your disabled child will have on your life.  And together make a decision that this experience will make your marriage stronger ... not pull it apart.

Balance the Load.  One of the most common issues that couples encounter when managing a special needs child is the additional work-load.  Those tasks might be medical-related.  Or they might be related to doctor and therapy appointments or school meetings.  And in today's world, there is a good chance you both will be working.  We learned to divide the work load between us.  This helped us from "burning out" under the pressure.  And it also quickly became apparent that caring for our special child would take BOTH OF US.  Another reason to stay together and work as a team.

Reach out to Others.  When Melissa was young we joined a local support group for parents of special needs children.  I can remember that first meeting like it was yesterday.  I looked around at the other parents and their children.  I remember thinking how lucky we were, because caring for Melissa was not nearly as difficult as the task they faced.  It's interesting how seeing the challenge of others helps put your own situation into perspective.  For the past decade we have lead a global support group for parents and professionals dealing with metabolic disorders like Melissa's.  We have shared our life journey with other parents in the group.  And this process has not only helped them,  but has been very therapeutic for us as a couple. 

Start Dating Again.  We were lucky to have live-in nanny's for Melissa.  We found young women who wanted to take a year off between high school and college and we hired them to move in with us and care for Melissa when we were at work and some evenings so that we could go on a "date".  The time away gave us time to heal.  And looking back, I believe this was one of the things that helped us win the war against depression and divorce.  I realize that this approach isn't feasible for everyone.  But you can turn to family and friends to give you a much-needed break.  Even a battery needs re-charging!

Remember that becoming a parent of a special needs child isn't something you asked for.  And you are not the first nor the last couple to face these challenges.

Don't let denial hold you back.  Use it as a catapult to move forward in your healing process.  While it might not seem so, life CAN and WILL get better.

PEACE