Welcome to Holland
By Emily Pearl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum.
The Michaelangelo. David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says, “Welcome to Holland.”
“Holland?!” you say, “What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I planned.”
And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, lovely things about Holland.
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10 Tips for Talking with Children about a Parent’s Life Threatening Illness
By Janet D. Perloff, PhD, AM, and Victoria M. Rizzo, PhD, MSW, authors of Conversations of the Heart: Resources for Talking with Children about a Parent’s Serious Illness.
Are you – or a friend or family member – living with a life-threatening illness? If so, we offer the following ideas and words of encouragement to help you with the process of talking with children about a parent’s life-threatening illness.
Have confidence in yourself. You will find your own way to communicate and provide support for your children during difficult times. Although you may not be able to fully protect your children, you can help them learn the skills they need to effectively cope with life’s difficulties. Just do the best that you can.
Have confidence in your child’s ability to understand and cope. Believe in your child’s inner strength and resilience.
Take your time. Before talking with your children, you may want to take some time to attend to any immediate medical challenges, make treatment plans, and get a grip on your own emotions. Taking the time for these steps may help you communicate most effectively with your children.
Get the help you need. Before talking with your children, you may want to consult with family and friends. Or you may want to talk with a social worker, a clergy member, your pediatrician, a school guidance counselor, and/or other parents in a similar situation. You may find it useful to refer to books, Web sites, and support groups.
Jump in. You can postpone talking with your children until you feel prepared, but it probably is best not to put that first conversation off for very long. Children can tell when something is amiss. If you don’t begin talking, they will worry. So take a deep breath and begin talking.
Follow your child’s lead. Invite your children’s questions. Do your best to answer these questions while keeping it simple and trying not to get ahead of your children’s age, stage of development, ability to comprehend, and need to know.
Keep talking. Illness is a process and, over time, opportunities will arise for ongoing discussions about living, illness, medical care, and dying. Use these opportunities to enable the members of your family to talk and reflect. Find ways to keep lines of communication open so that your children can ask their questions and express their feelings and concerns.
Find adults who will serve as your allies. Invite them to be your eyes and ears, letting you know if they have concerns about your children’s adjustment to the illness. Your allies might include teachers, guidance counselors, school nurses, coaches, and the parents of your children’s friends.
Anticipate the possibility of a chronic phase. Although it may be hard to believe it when you are first diagnosed with a life-threatening illness, you may live with your illness for a long time. With any luck, there may even be times when your illness recedes into the background of your lives. Do your best to help your family enjoy these good times.
Anticipate uncertainty and find ways to cope with it. There may be many times when you simply don’t know what is going to happen to you. You may need to be able to say to your children “I just don’t know.” Invite them to join you in your hopes for the future and help them go on living and loving despite the uncertainties.