• Kate

Introducing Guest Blogger (Carolyn - AKA My Mom)

Updated: May 2

I may be biased, but my mom is pretty cool. She has overcome cancer twice in her lifetime, is extremely kind, can make instant friends with anyone, loves to write, and is a talented seamstress (to name a few of her strengths). Often, when I wake up in the morning, there is an email in my inbox from her, which is a positive way to start the day. I know all my cancer crap has taken its tole on her and my dad, but they have never shied away, and have always been there for me. My mom understands what I have been going through on a deeper level than most will ever know, and that is a good feeling.


Anyway, enough gushing. Below is a blog post my mom wrote about the National Institutes of Health Family Lodge, where my parents and husband stayed while I was having surgery and recovery from my total gastrectomy. It is such an amazing resource for families to be able to stay on campus, within a short walk of the clinical center, and be able to spend time with and see their hospitalized loved ones without the hassle of going through security multiple times per day.


When I was ready to leave the hospital, I was able to stay at the lodge as a sort of transition before heading home. It was nice being in a comfortable home like setting, while still being close enough to the clinical center to go back if I had issues, and to continue meeting with my team for appointments. It also helped me start learning how to eat on my own, without relying on the hospital to provide meals for me. I took some pictures during my time at the lodge, and will share them with my mom's words.


Enjoy!

Kate



Our place of Refuge


The Edmund J. Safra Lodge was built on the NIH campus to help families living with a loved one's disease to somehow cope a bit better with yet another hospital stay. Almost all the patients are in scientific studies trying to find cures for certain diseases or help with end of life transition.


Anyway, I am so glad this Lodge could accommodate my family for the time we needed to be with my daughter and her recent surgery at NIH. We were greeted by excellent frontline people and issued our information on how to access all of the Lodge’s amenities; huge commercial kitchen for our use any time of the day or night, our own basket for storing refrigerator items we would need during our stay, storage for dried food goods, free laundry machines and detergent, and very nice room accommodations.


The Lodge is set up so you can get out of your room and wonder through the bottom floor designed to look and feel like an English Country Cottage. There is a library and more formal dining room. There are groupings for conversation in every corner. There is an exercise room. There is an English garden right outside the Lodge which you can wonder and end up on a cedar bench in the woods for a spiritual experience. Quiet in the middle of a big city. The compound puts its arms around you to protect you somehow from the very disease that might be killing you or a family member.


The view from "a cedar bench in the woods" my mom refers to.

You can feel at home away from home and only walk a short distance away from your hospitalized family member. I even walked over during the night a couple of nights and felt safe on the NIH campus. There was security everywhere.


View of the clinical center from the front door of the lodge. Very short walk to visit a family member in the hospital, or there is a shuttle that can take you anytime of the day or night if walking isn't feasible.

Every morning we were greeted with snacks, water, and milk for the taking so it was easy to have breakfast right there or take it to go. Donations of fruit are readily available. You can make tea or coffee any time. Everything is provided for cooking or baking in the kitchen. Folks that are there for a longer period cook every day in the kitchen and sometimes share their creations.


We are all brought together for the same reasons; hoping a cure can be found for our loved one in his/her lifetime. Some people are returning monthly and have this place of refuge to come back to each time.


One view of the gourmet kitchen available for cooking, eating, and visiting.

Also, you meet friends along the way if you are open to that. Some people prefer to keep to themselves and everyone is respectful of that. For the most part everyone is there for their own unique reason and being able to talk in a safe place is truly a gift. Someone is always worse off when dealing with a health crisis so being able to share always brings that into perspective.



If you'd like to get in touch, email me at mypinkgenes@gmail.com.

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Take great care!

Kate

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