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

some handy phrases in Italian. It’s all very exciting.
comes in and says, “Welcome to Holland.”
there you must stay.
different place.
Holland has tulips. Holland even has Rembrandts.
had planned.”
loss of that dream is a very very significant loss.
…about Holland