When we think of the word family, we feel that warm and fuzzy feeling inside. We ordinarily think of our parents, maybe our siblings, grandparents, aunts ... but is that the entirety of our family?
Growing up with cystic fibrosis, my blood relatives were so crucial in forming me into the person I am today, instilling the positivity and strength I needed to flourish despite my battles with CF. But now, at age 27, I find myself relying on people outside of that initial bubble for support.
To me, family is everything. Family is everyone.
Family are those people who stand there next to you in your darkest hours, who don't shy away from the ugly truth, and instead stand there strong with you. Sometimes those people are the family we were born into; sometimes they are the family we have chosen over the years; and sometimes -- if we are lucky enough -- it's a combination of the two
When I was 18, I left home and went to college 1,000 miles away from anyone and everything I had ever known. Though having my family so far away was hard, I came to appreciate the distance as a gift. It allowed me to create a space in my life and in my heart for a new family and a family that -- at times -- is stronger than any blood that I've known. This family consisted of the people who never knew what CF was before they met me, the people who accepted me as I am, and the people who decided to love me because of it, rather than in spite of it.
When I got sick and found myself in a hospital bed thousands of miles away from my blood family, it wasn't Dad I saw walking into my hospital room, or my brother, or an aunt. Instead, I saw friend after friend, who had no blood relation or obligation to be there, showing up for me. They brought food, told jokes, watched trashy reality TV with me, or sent me all the cat memes they could find to just make me laugh. I had begun to realize my family extended far beyond those who shared my last name.
It is a beautifully organic transformation that each person takes into adulthood -- both cherishing the family bonds that created who they are and branching out to make their own family for themselves. Within the Merriam-Webster Dictionary, the initial definition of family that appears is: “The basic unit in society, traditionally consisting of two parents rearing children.” But, this is then followed up by a second definition: “Any of various social units differing from but regarded as equivalent to the traditional family.” As we get older, we realize how many different images of family there are, each as precious as the next.
With a disease like CF, family is crucial in supporting us, hearing our feelings, crying with us, laughing with us, reminding us it will be OK, and loving us through the hardest parts of life more than anyone could ever imagine. Even if you are the one with CF, you know how impactful this disease can be for those closest to you -- those relatives who don't know what birthday may be the last; those friends and spouses who came later in life but love you as if they have been there all along. Just as us CFers need support, our families of all shapes and sizes do too. This is why the CF Foundation created FamilyCon, which I am co-chairing this year. I would not be here without the support of all my different types of family.
I know how important it is to lean on one another, how necessary it is to have people around you who see the light when you just want to hide in the dark.
FamilyCon is a time to celebrate what family means and give back to those who have given so much. It is a place for parents, caregivers, friends, siblings, and any other member of our families to come, connect with others, share their stories, and learn how to tackle this disease together. There are breakout sessions for spouses, parents, siblings, and CFers to talk about the real, raw, funny, and hard-to-talk-about topics with one another. I hope you will join me, my family, and so many others at FamilyCon this year, June 18 and 20!
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