One group of people we often think about but don’t often directly address is caregivers. All of you partners, parents, siblings, grandparents, friends or family members, we want you to know how vital you are to this community. We want to make sure you have a space specifically for you, by you. To accomplish this, we asked our friend Allison Breininger to help us. Allison is mom to Maya and wife to Sean, who lives with FA. She is an accomplished writer who combines her creative talent with her lived experience as a caregiver to create a blog dedicated to others in what she calls “The Negative Space.” This is the space around or in between the subject that is often overlooked but is vital to the whole picture, like how a caregiver is vital to the livelihood of a person with FA. To read more of Allison’s work, including popular essays like “The Job Description of a Caregiver” and “What Your Struggling Friend Really Wants,” visit www.thenegativespace.life.
This is for you.
I know that each time the FARF newsletter arrives, you pore over its contents, hoping that this will be the issue where you’ll read about an advancement, a new drug, a potential cure, something that will change the statistics you’ve read, studied, had nightmares about.
I know that you take notes from these newsletters on the featured fundraisers, jotting down tips and tricks so that your next event can funnel even more money towards some answers, some hope.
I know you look at the FA adults who are highlighted here, taking in their ages and their accomplishments, and allowing their longevity to bring with it the fresh air of possibility.
I know you grieve at the “In Loving Memory” section, looking carefully at the birth year of each person lost, comparing it to that of the person you love. I know you mourn the names listed that you had been lucky to befriend and that you have moments of wondering if you have it in you to continue to make new friends that you may very well lose. I know you do all you can not to imagine your person’s name, written in that font, in that box.
How can I claim to know these things? My husband, Sean, was diagnosed with Fanconi anemia nine years ago at the age of 32. Since then he has undergone a bone marrow transplant and has been diagnosed with and treated for cancer of the tongue, throat, gums, bladder, lips, and skin. I have been by his side for every appointment and procedure. I have read the research, done the fundraising, gone to the meetings, attended funerals for friends from this community. Like you, I am an FA caregiver.
Because I am, I know that just like your life, this newsletter has been dedicated to the person in your world with Fanconi anemia. But, dear caregiver, I’m delighted to tell you that that is about to change.
The Fanconi Anemia Research Fund knows that alongside every person diagnosed with FA is a caregiver. Whether that title resonates with you or not, if you are reading this newsletter because a person you love has FA, we are talking to you. When describing your role, you likely say, “I just do what any other parent/partner/friend would do…” but let me tell you that I am well aware of what it is you do and there is no “just” about it.
Caregiver, we want you to know that you are seen. We see you at the family and adult meetings taking notes, asking questions, cornering the researchers in the breakfast line. We see the coordination and preparation you take on to get your loved one to and through those meetings. We see you posting questions on the family Facebook page late at night from hospital rooms. We see you rallying around your fellow caregivers at transplant centers, Ronald McDonald Houses, and online, using energy you don’t have to hold up others you’ve barely met but with whom your connection is so powerful. We see you counting everything from platelet levels to days post-transplant to everyday blessings.
Caregiver, we see you, we honor you, we are here to support you.
Moving forward, we will have a space in every print and online newsletter dedicated to caregivers. We are working on ways to honor, include, and support you through the work of the Fanconi Anemia Research Fund all year long.
We realize that so many of the services, supports, and appointments you spend your days on are aimed at the needs of your loved one. But we also see that you, dear caregiver, are living through and with the effects of this disease as well. We want you to have a space that’s dedicated to you and to the reality that is being a caregiver for a person with Fanconi anemia.
Caregivers, this is for you.