When my daughter Juliana was a baby, I could see that she wasn’t meeting the same milestones that my other children had met during their first years. My pediatrician kept telling me that Juliana was just slightly delayed and would catch up, but I could feel that there was more to the story. I did research and brought her to specialists. When she was about a year old, I learned about early intervention, and got physical and speech therapists to come to my home and work with her. Eventually Juliana was able to walk. Unfortunately, around 18 months she started to have seizures.
Finding Inner Strength
When Juliana was diagnosed with apraxia (developmental delays) and epilepsy, it was devastating. I was so stunned and sad. My life and our lives as a family had changed and taken a drastically different course from the one we had expected. But as a working mom, parent and new caregiver, I knew I needed to work through these feelings and channel them into strength so that I could help my daughter. She needed me, and I needed to learn quickly to advocate for myself and for her.
At first, it was very difficult. It felt as if the world was on my shoulders. But as the days and weeks and years went by, we got into a routine. This is very important because it provides stability and predictability. I learned not to overreact, but to calmly assess every urgent matter so that I could figure out what I needed to do and when. I was able to help balance my own needs and those of my daughter.
Part of what I needed was to keep working at my job, which I have had for 19 years, and which I love. My parents instilled in me and my siblings a practical work ethic. Though I’m a private person, I knew that I was going to have to discuss my caregiving responsibilities with my supervisor because I needed support and flexibility in my work schedule. It was hard for me to muster up the courage to have such a personal discussion. The first conversation with my manager was difficult, but necessary.
During that first conversation, I simply explained my new situation and let my supervisor know that I needed to be available when my daughter needed me. I was pleasantly surprised by the support I received—not just from supervisors, but from my colleagues too. I remember when the first urgent matter came up, my supervisor said to me: “Go. Just go.” I realized that people want to help and my colleagues wanted to support my need for flexibility. Their understanding has given me the strength to be very open. Recently, I’ve even spoken in public about my own personal experience as a caregiver to my peers. I’ve started to write articles about it too, and I think this gives me a stronger voice that can actually help other people.
Advice for Other Parents
My advice is to be open about your situation, and never be afraid to ask for what you need. If you don’t ask, you will never know. You’ll be surprised how many people are in the same situation and by the support you can receive by your colleagues, peers, friends and others. The biggest things that helped me were:
- Learning to trust my instincts
- Sharing my story and being open to listen to feedback and responses so that I can learn about myself and others
- Finding support through local organizations and special education resources in schools
- Creating a trustworthy medical team who cares for my daughter and coordinating the care and communication of her doctors, and
- Reading a poem entitled “Welcome to Holland” by Emily Perl Kingsly
It may seem strange to say that a poem helped me during one of my darkest times, but one of Juliana’s pediatricians recommended I read it. It helped me to accept my new world, and to stay focused on what’s important.
Caring for my daughter requires strength every day, but I remind myself to channel my sadness into helping her. It’s helped me to find my voice and share it. I hope you find your voice and speak up too.
Bernadette Shirghio is a Senior Director for Corporate Functions & Business Services Business Technology at Pfizer. She has been coordinating medical care for her daughter for nearly a decade, and recently started speaking and writing about caregiving.