A Family Affair

At last week's appointment, we (my husband was there too, as always) had a frank discussion with my doctor about other stressors in my life besides my illness. Family issues unrelated to my health have been weighing heavily on me, and certainly aren't helping the situation. My doctor asked me if the usual trials of having a 16 yr. old daughter added additional stress, and I was proud to say that S. has been the easiest child to raise. She and my husband can lift my spirits like no one else can just by being in the same room.

Dealing with a serious illness is often said to be something that the whole family suffers, not just the patient. I believe it, and try to respect that at every turn. I realize that this is just as hard on my husband and daughter as it is on me, and felt that it was high time that my doctor and daughter met. There was one other reason to make this happen, as it turns out my lead doctor and my daughter's grandfather on her dad's side grew up together in another country. Grandpa sadly passed away this spring, making this meeting yesterday more meaningful. I could see in Dr. H's eyes how pleased he was to meet the granddaughter of his dear friend.

Dr. H. has lots of questions for S. about school, future plans etc. Her grandmother had asked for a photo of the two of them together, which Dr. H. graciously agreed to - and why didn't we include Harvey? Harvey, as I should explain is a $100K teaching cardiac dummy donated to my medical team by a former patient which replicates various cardiac conditions. Dr. H. cranked up Harvey for S., letting her listen to what a normal heart should sound like, and what my heart sounds like (ooh mom, that's weird!) S. was blown away, all she kept saying is "that's so cool!" to which Dr. H. replied that it was indeed cool, and that it might have been the first time he'd used that particular phrase ... :-)

It was an important day for me. My interaction with my medical team has become very personal, I know that they care deeply about my wellbeing and are doing everything that they can to make me more comfortable. Having my daughter finally meet Dr. H. felt right, I know he wants my daughter's mother to be around as long as possible.

As scary as hospitals can be, I'm in a safe place on the 8th floor in the "rare disease" clinic. I wanted my daughter to see for herself that I'm in very capable hands (and she tells me that this visit did indeed help her a lot with dealing with "our" illness).