At the age of 13 my beautiful, smart, popular, athletic, and seemingly healthy daughter was diagnosed with a disease I never heard of…Ulcerative Colitis. And my family’s life as we knew it and planned for it changed forever. I went from being a working Mom to being a caregiver, a descriptor I had previously associated with nurses’ aides and the elderly.
My daughter was very private about her illness and out of respect for her, so was I. The only people that really knew what she, and by extension, my family was going through was us. Even my parents (her beloved Grandparents), who we are all very close to were provided with “just what they needed to know”. I didn’t want to upset them more than they already were, and my daughter didn’t want to discuss it.
Mt Sinai Hospital became way too familiar…endless surgeries, procedures, infections, emergencies, coupled with so many missed HS and then College days that she lost a year of both. Friendships (both hers and to some degree ours) came and went, triggered by endless canceled plans until people stopped calling. Our world got smaller and smaller and often felt like it was just the 3 of us, along with my son, who we shielded best as we could.
It’s been 22 years since her original diagnosis, and much has changed. She is now married, very open about her disease, and advocates for others who like her feel alone. She still suffers terribly, and I still worry about her every day. Once a mom, always a mom, and I have learned that the same can be true of the caregiver role.
Through her advocacy, I have found the support I wish I had 22 years ago. I have connected with Stacy Dylan, President and Co-Founder of Connecting to Cure Crohn’s and Colitis; another mom, another full-time caregiver. We get each other like no other well-meaning friend can. It has been enormously comforting to talk so openly about our struggles, our worries, our concerns for our other children”. I never realized how much I suppressed until her experiences triggered those I buried. It has been so cathartic, so therapeutic, so good for me and I hope her.
I learn every day…through this I have learned that if you don’t take care of yourself, you can’t take care of anyone, to take one day at a time (sometimes half a day at a time), and the importance of finding the right support.
