Tobey from New Hampshire

My name is Tobey Davies and I’m from Belmont, New Hampshire. I have four children ranging in age from 12-22 years old. I also work full time conducting social science research on issues related to community development, poverty, workforce issues and disability.

Laura, my second child, was born seventeen years ago. Soon after birth, She was diagnosed with Williams Syndrome, a rare genetic disorder . Related to the condition, Laura was diagnosed with severe pulmonary artery stenosis, renal artery stenosis and a blockage in her aortic valve.

She needed frequent monitoring for her cardiac-pulmonary issues. Scheduling and attending her appointments alone was equivalent to a part-time job. One of the hardest decisions I had to make was to continue working. I am fortunate though that I do have flexibility in my work schedule, or Laura would not have been able to access the services she needed.

As life went on and we had two more children. Careers changed, I went to graduate school and continued to work.

The roles are many and present a sophisticated balancing act, particularly as I manage them in the context of all my other roles: wife, daughter, parent (of three other children), and employee. Laura needs assistance on a daily basis with every day things like picking out her clothes, taking care of her belongings, emotional support for her peaks and valleys, accessing educational content, self- advocacy, following through on her homework, household chores, and attending to her everyday responsibilities. She has skills in many areas, but needs assistance with most everything.

Being Laura’s primary caregiver means that I’m riding this roller coaster with her – every high and every low. I’m constantly creating solutions, and solving problems. It is exhausting, unsustainable and beyond frustrating.

I’m constantly struggling with issues of equity – am I doing enough, attending enough, available enough for all of my kids –not just Laura? They struggle with sibling issues, they don’t’ get as much time or attention as she does. But I do my best. I have to invest in my kids –all of them. But Laura’s future is the most at risk. What we don’t invest now will haunt us all later in life in the name of opportunity cost, and increased caregiver need if we don’t help her become as self-supporting as she can be.

Being a caregiver is a labor of love. Yet this comes at a tremendous personal cost - time, money spent, loss of productivity, loss of income. As a caregivers its hard to recognize when you’re burnt out and strained. We need more support like making sure other family caregivers have the workplace flexibility I have or respite care so we can take a hard earned break.