Parents and family can cope when a child has a deadly disease

Charlotte Benson

Special to Valley News

When a child is stricken with a deadly, little-known disease, the home can suddenly feel like a lost sailboat in a stormy sea. Waves of emotion overwhelm what had been a serene, happy place, and each family member faces challenges of how to move forward.

News of the diagnosis can take everyone off-guard, including the parents. Knowing their role is to always be in control, they find their world turned upside down. But somehow they must cope and help the terminally ill child and their siblings do the same.

For a heartbroken parent, positive steps start by finding gratitude and savoring each day the affected child is alive while fostering that perspective for the rest of the family. My daughter Christiane, 15, suffers from juvenile Batten disease, an incurable neurological disorder that results in blindness, seizures, loss of motor functions and speech.

Every day has to count. You learn that when you receive a diagnosis that’s devastating. Every day is a gift. It’s an opportunity to share a moment together.

I started the Beyond Batten Disease Foundation with my husband, Craig. I recommend three areas where parents can help their family deal with the reality of a child’s terminal condition.

First, employ honesty and acceptance. Parents may want to hide or delay the diagnosis, so as to protect the siblings emotionally; however, I think that honesty helps establish a new normal and gives the siblings coping skills for their adult lives.

One thing that’s been very successful for us has been to take the approach of complete honesty about Christiane’s condition with the children from the very beginning. It’s kind of a gradual assimilation to a different reality. If you give children a chance to adapt to their circumstances, they do it beautifully.

Next, exercise faith and inspiration. Our faith has been an irreplaceable source of comfort. We believe that Christiane’s life has purpose and meaning and trusting that God has a plan for her life allows us to accept the places where we are powerless. We’ve also tried to teach our children that it’s not what happens to you in life that matters; it’s how you handle it that counts. A diagnosis like Batten has the potential to take you out at the knees and cripple you for life. But then you have a choice of whether you want to live feeling sorry for yourself, try to make the most of what you have or even better, live trying to use your misfortune in a positive way for the good of others.

Last, see things as a small window in a big picture. The challenge of having a child with special needs completely changes your life in every perspective. With a child’s life shortened, the “future” has a more fleeting definition. It really paralyzes your ability to dream about a future in a conventional sense. You have to re-frame how you think about the future. You try to keep your dreaming in finite chunks, because you may not know what your child’s condition will be a year from now.

Any life path can be full of extraordinary trials. In our case, we are inspired by Christiane, who continues to be independent, spirited, determined and courageous as she faces her own challenges of living with a deadly disease. She reminds us that we can all decide to believe beyond our own limitations and fears.

The Beyond Batten Disease Foundation, www.beyondbatten.org, was launched in 2008 by Craig and Charlotte Benson, whose daughter, Christiane, has juvenile Batten disease. The nonprofit foundation’s goal is to help eradicate the disease by raising awareness about Batten and funding research for a cure.

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