In January, I hit the caregiver wall.
Somehow I’ve always been able to adapt to Abby’s extra needs stemming from her prematurity, but she slipped and hit her head after bath time in December, and after that things became intense. I had a child that could no longer attend school. She couldn’t walk without supervision. She had headaches and got carsick. She was getting used to the side effects of her new seizure medication and had multiple doctors’ appointments a week.
Dealing with all of that is enough, but I also had a job to keep, new medical bills and two other children to take care of.
Overwhelmed and in tears one afternoon, I called my sister, a CHKD social worker. She listened, as she always does, and then she social-worked me. She recommended I call CHKD’s Care Connection.
The call changed everything.
Abby was assigned a case manager to help me manage her medical and educational needs. Monica has been absolutely indispensable. She calls and asks what she can take off my to-do list. She checks in with doctors and therapists, makes appointments for me and gets the medical reports I need for big appointments.
She’s also a wealth of information. She knows about programs and resources I’d never find on my own. I can send things to her, and she “has people.” I like her people.
Perhaps the very best thing she’s done is sit beside me at tough meetings, like Abby’s interview for an EDCD waiver to allow her to receive services in our home, and her individual education plan (IEP) meetings to get things set up for next year in kindergarten. When I run out of questions or am stumped on what to say next, Monica’s right beside me to fill in the gaps.
We’re basically Batman and Robin. She even helps with paperwork!
The stress is still there, but it is lessened by her support.
My email to her on April 14 sums it up best:
Monica,
I wanted to let you know I really appreciate all your help today getting Abby's IEP eligibility, but also your help with the EDCD waiver, and just overall during the last few months with Abby's acute medical needs.
Sometimes life gets so busy that I forget to stop and reach back out. I want you to know that Abby's quality of life is enriched by your assistance, and my stress level is reduced by your help, knowledge and resources. I've done this stuff on my own for most of her (and Jackson's) life, but the water stays under my chin when I can tag team with you.
I know we'll be talking soon but just wanted to say thanks again!
Jessica
CHKD's Care Connection for Children (CCC) provides case management and care coordination services with independent, private specialists and practitioners regardless of a family's income.
If you feel like you need help, don’t wait until you are underwater. Learn more here or call (757) 668-7132 or (800)-864-8903.
About Jessica Woolwine
Jessica Woolwine is a native of Hampton Roads and lives in Hampton with her three “miracles” Jackson (9), Abby (5) and Henry (1). As a mother to a childhood cancer survivor and a micro-preemie, she began the blog
Mothering Miracles in 2014 to support other families dealing with health issues. Jessica also works as
Creative Director for Rubin Communications Group and enjoys mixing her talents for graphic design and creative writing with community relations. She is a past member of both the
CHKD Family Advisory Council and the CHKD NICU Family Advisory Council.