Let me share a brief story about a family coping with their son having a rare medical illness in which a bone marrow transplant was the only hope for his survival.  Their son was in the hospital for several months and so I was fortunate to be able to spend many hours getting to know both of the parents.  We spoke about how they each coped with the potential loss of their son in such disparate ways, which was understandably wearing on their marriage.  She wanted to talk about her fears of losing her son; he wanted to think positive and work more hours at his job to provide for all of their medical bills.
She refused to leave the hospital to show her son how much she loves and supports him; he tried to limit the time he spent at the hospital so that his son knows that life will get back to normal soon.  Despite such different coping styles, their fears were exactly the same.  Would their son survive?  Would their marriage endure such stress?  How will they be able to handle such overwhelming medical bills?  How will their daughter get through all of the stress and trauma of having such an ill brother and preoccupied parents?
I have heard enumerable variations of these questions across families from all backgrounds, and across socioeconomic status, race, and religion.  The common denominator in all of the stories and questions that I have heard is having a child with a rare and serious illness.
I bring up this story hopefully as a way to normalize what parents and families experience when they have an ill child in the family.  No one plans for this experience.  No parent is prepared or excited for such an undertaking.  When I worked at Children’s Hospital, Orange County, the following poem was given to me by a mother of a child who was severely ill and she felt it captured the essence of her experience as a parent of a medically-fragile child.  I am posting it on the RARE Blog because this story may resonate with some parents.
Please note that my blog entries do not constitute professional advice, nor imply a professional relationship with readers.
Welcome To Holland
by Emily Perl 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 guide books and make your wonderful plans.
The Coliseum. The Michelangelo 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 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’ve 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 for a while and you catch your breath, you
look around…. and 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 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