A Utopian Community

The definition of utopia is a community or society possessing highly desirable or perfect qualities. We found our Utopia this weekend in a Best Western Plus in Bloomington, Minnesota at an MTM-CNM Family Conference. This community is loving, understanding, sympathetic, and exciting. While in this utopia, there are no stares, no one asking “what’s wrong with him,” and no looks of sadness or pity. Benjamin even noticed this the moment we arrived. He knew he was surrounded by people who look at him as Benjamin and not so much as the little boy on a vent. Benjamin smiled, danced, waved, and blew kisses from the start feeling the same type of comfort we felt with our MTM-CNM family. This community is full of people with “highly desirable or perfect qualities.” 🙂

Over the past year and a half, I have kept close contact with people from around the world because of one common interest, our children. Though we had never met in person, initial hugs and embraces felt comforting as if we had all met before. Being new to the community (Benjamin was the youngest to attend), many people had already met and made lifelong bonds, but we were welcomed with open arms and open hearts.

The first night, each family had to introduce themselves. Some parents came alone, some brought an army of nurses and siblings, and some came with an MTM-CNM angel sitting on their shoulders. We laughed, we cried, we bonded over similar stories, but enjoyed hearing about our differences.

This has been such a wonderful experience. Where else other than this Utopia can we suction Benjamin without worrying about the loudness of the equipment, grossing anyone out with excessive amounts of secretions and mucus, and feed Benjamin without stares? Where else do conversations about equipment, braces, decisions on bibs, and types of trachs actually seem exciting and productive? Where else do people understand the analogy between Benjamin and Moses? (Parting a crowd as fast as Moses parted the Red Sea)

In addition to the great connections we had with families, we also connected with the top researchers from multiple countries, learned about the future of treatments and a possible cure, and had Benjamin participate in a few studies. Though this is important and exciting, in no way can it compare to the excitement of meeting our extended family in this Utopia.

The last night was Talent night. Though these kiddos go through some very tough times, they have the best sense of humor. KC and I were so entertained and impressed with everyone’s abilities, it made me even more hopeful for Benjamin’s future. We are already planning our family’s talent for the next talent show. Watch out, Lennon and Isla will be with us, and they love a crowd. 🙂

Today, KC and I had to leave this Utopia early to get on the road. I was sad to miss the last day, but a part of me was a little glad to miss the sad goodbyes. I have never been very good at goodbyes, and I know that the “ugly cry” might have come out. This is not goodbye, this is a “see ya later.” We hope to have visitors in New Orleans soon.

To our MTM-CNM family, thank you for all your love, support, and knowledge. What you have accomplished as a team is amazing. See ya later! 🙂












4 thoughts on “A Utopian Community

  1. We were so sorry to miss the conference this year. I love love love what you wrote. It made me smile. The pictures you posted are wonderful and gave us a look at the weekend.

  2. So beautifully said!!! What a magical weekend this was once again! So blessed to have spent time in your presence and to share in this utopian world with you! Cried many a tear myself this weekend and can’t wait to see you again!!!

  3. Thanks for sharing this! Indeed, it is amazing to be surrounded by a tribe of people who can see right past the machines and just love your kid! It was so great to get to know all three of you this weekend!

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