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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

Sometimes, as I wander around whatever hospital we’re in, I wonder what the difference in normal is between us and them: those living with a chronic condition and the people that do not. As they were wheeling Max into the operating room for yet another surgery, I wondered when this became our normal.

Max and I have a routine when prepping for surgery. While waiting for visits from doctors, anesthesiologists, and our HTC nurse, Max and I pass the time reading a book.  An IV is started, an infusion of factor is given, and bloodwork to check factor levels is done. Finally, we put on the little paper caps and complete the many small tasks that precede the actual surgery.

Once he’s wheeled away, I begin my other routine. I check-in to whatever hotel I’m staying, find a place to grab food, and often read some more. I’m always checking the time because even if they say I have three hours, I can’t be gone from the hospital for that long. At each stage of the day, from procedure to recovery and until he’s settled in his room, I wait and read. I may make a trip back to my lodging but just for a few hour before I head back to the hospital as early as they’ll let me in the next morning. Hospitals were once foreign, daunting places for me. I’m pretty healthy and have been relatively lucky when it comes to emergency visits, so I never spent much time in hospitals until Max was born.  We went camping when Max was little and we took off for a week or weekend just because we could: travel became our normal. Ending up in a far away emergency room or having an overnight stay in an out-of-state hospital became part of our normal. The first thing I still look for when we are traveling are the blue “H” signs indicating a nearby hospital. Before we had cell phones and GPS it was crucial to know where to go. He’s been in ER’s from New Hampshire to Florida, Chicago to Washington DC. There may have been one in Colorado or California but I honestly don’t remember them all.

max_kneesAs I was walking around at Dartmouth Hitchcock Medical Center in New Hampshire, it occurred to me that even though it’s a big facility, I can navigate the halls and floors without even thinking about where I’m going. I know which lot to park in depending on which procedure he’s having, where the pharmacy is, and where orthopedics, hem/onc and PT are located. I know the best low or no-cost places to stay overnight and the easiest, tastiest, or most cost effective places to eat.

Much of our lives have involved doctors, nurses, medication, or hospitals. It can feel terribly lonely even though there are many people who we call family that love and support us. They truly care. But, when it comes down to it, when we’re headed to an ER in a cab in a strange city or driving through the night looking  for an emergency room it still feels lonely. While I’m sitting at Max’s bedside when he’s in that medicated place between aware and unaware the world feels very small. I am grateful to know how much we’re loved and in those quiet, lonely moments of self-pity I know I’m really not alone. It makes me very careful to let others know that I care, especially to those of us whose “normal” involve long hours in hospitals appreciate the offers of support.

Those of us who live with chronic conditions also know that unless you have sat or slept in those awful hospital chair/beds the best thing to offer us is love. And maybe food. I really like food when I’m stressed.

*Max came through the procedure and is healing nicely.

Maryann and her 23-year-old son, Max, live in New Hampshire.


*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare provid

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