The Feet Between Friendship

As a parent of a child with CF and an "honorary member" of the professional CF community, I have a very realistic understanding of the fears that abound with cross infection. 

I have gently taught my daughter the risks of in-person interactions with others living with CF, painfully vocalizing that those who are her most relatable to her, also hold perilous risk to her as well. I hope my voice resonates in her mind as she faces these inevitable choices in her life. I also understand that camaraderie and feelings of solidarity reside between individuals with CF that no one else can ever comprehend. There is a bond there that no amount of education, experience or desire to relate can supersede. Disseminating a message that is laden with fear without a plan to support is something our community has done well over the past decade, I'm grateful to see a growing trend to address this gap. 

I believe earnestly that connection and peer support are critical to the mental health of our community.  Which is why I encourage Maylie to develop deep and meaningful friendships with peers who truly understand her journey, through virtual groups. I realize that these growing friendships could lead to a meet-up someday, but I hope her voice of reason is prominent if that day comes, and she takes precautions to protect herself while feeding her soul and mental health needs. 

As a cautious parent, I hope Maylie's future is bright and enriched by a partner who loves and supports her, who does not live with CF. However, I can honestly say that I understand why some individuals with CF seek that relationship. One of our clients wrote a beautiful blog, Zero Feet Apart, about loving and losing his partner who also had CF, it is well worth your time to step into his life for a moment and see the values that outweighed the risks for him. 

Kat PorcoComment