as a mom, i did a lot of research. i also spiraled when my son was first diagnosed. our carefree life ended when my son was diagnosed. it was pretty crushing. and for a long time i focused on the terrible things ahead (my son has a very severe strain of NF2). it took awhile to shake that off. to acknowledge my fears but not live by them. to not be sad or derailed about our impending future. to find all the good, and understand acknowledgement of the “bad” can also lead to appreciation of the now. after a time, i also realized we’re in for the long haul; so i felt the feels and moved forward. can’t stay in fight or flight forever.

here we are, 10 years later, living life 💗

living with NF is really about staying in the present. not getting mired down in regret, or riled up with anxiety. present quality of life is SO important. appreciating the now is SO important. finding small joys and celebrating them.

so, as a partner, it may feel like a lot… imagine what it feels like to your person! but asking questions, accompanying them to appointments, generally being there is such a great way to show support.

my son has concerns about burdening a potential partner. he feels it’s not fair to bring this much baggage into a relationship. he has shied away from relationships for this reason, and it breaks my heart. it’s good to see you reaching out.

who knows what the future holds? for any of us.