We are very fortunate to live near the DuPont Hospital for Children in Wilmington, Delaware. Good doctors and good hospitals are out there. These are very difficult questions to ask yourself, but it is important that you approach these issues honestly and directly. Once you find the nearest facility with the staff and equipment needed to respond to your child s illnesses, do everything you can to develop positive relationships with these professionals. View your child s doctors, nurses, therapists, and teachers as partners in support of your child.
Respect is a two-way street.
Community A few weeks after Jack was diagnosed, I realized we had not heard from some of our close friends and family. So instead of doing the wrong thing, they are giving you the space and time to be with each other, and hoping you will give them some signal about what you need. But what the social worker said actually made some sense when I put myself in the shoes of our friends and family, especially those who had babies or young children of their own. Ours was the worst case scenario for any young family, one that was simply incomprehensible to others. A few days later, we mailed a letter to all of our close friends and family, honestly explaining Jack s diagnosis, prognosis, and how they could support us.