Emotional Impact of Diagnosis
When a child is diagnosed with a bleeding disorder, a natural response is a rush of emotions and reactions. Some parents grieve the loss of the dream of the perfect child. They may have difficulty picturing what their new family life will be like. All of these feelings are perfectly normal.
Defining your new normal
Stages of Grief
Grieving is a natural, complex—and often lengthy—process. It can be broken down into several common emotions. Not everyone experiences all the same emotions; nor do they experience them to the same intensity or in the same order. Some people experience these emotions repeatedly before adjusting to a new situation or life stage. Parents should allow themselves to go through this grieving process. Indeed, acceptance may come more quickly if they do so.
Following closely after shock, denial may be used to cushion the reality that is unfolding. During this stage a parent may think or even say, "This can’t be happening to my child."
These are true and intense feelings of rage. They may be directed toward the parent’s spouse or partner, themselves, or medical professionals.
A grieving person may try to make a deal, bargain, or promise with the universe, asking, "If I do this, will you take away the loss?"
At this stage, the parent may feel emotionally and physically drained from the experience. The overwhelming feelings of hopelessness, frustration, bitterness, and self-pity are compiled by mourning the loss of their hopes, dreams, and plans for the future.
A parent who reaches this stage begins to feel that the anger, sadness, and mourning have lessened. The person begins to see the reality of the loss clearly and acknowledge the life change it has brought.
One Mother's Journey
The following poem is about a mother confronting and accepting the challenges—and eventually the joys—of raising a child with a disability. The author, Emily Perl Kingsly, wrote the poem in 1987. Translated into many languages, the poem has helped thousands of parents who have faced similar experiences.
At the end of this poem are a series of questions that may help you and other members of your family deal with the news that your child has been diagnosed with a bleeding disorder.
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared the 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 guide books and make your wonderful plans: the Coliseum, the Michelangelo David, the gondolas in Venice. You may even learn some handy phrases in Italian. It’s all very exciting.
After several 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 in 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 guide books. 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 awhile you begin to notice that Holland has windmills…and 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 had planned. And the pain of that will never, ever, 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, the very lovely things…about Holland.
© 1987 by Emily Perl Kingsley. All rights reserved.
Thinking About Welcome to Holland
Take a moment to reflect on Emily's poem. Consider sharing it with others in your family. It might help everyone express their feelings.
- What were your initial feelings when you thought about what it would be like to raise a child with a bleeding disorder? Many times parents have misconceptions or incorrect information based on the experiences of others in their family
- Does this sound like your experience when your child was diagnosed?
- How have you adjusted to being in Holland?
- Do you feel like you can let go of the dream of going to Italy and enjoy Holland?
- What one word would you use to describe your initial feeling after hearing about your child's bleeding disorder?
Remember, going to Italy would have been nice, but then we would never have seen the beauty of Holland.