Cynthia's Caregiving Story

How long have you been a caregiver? Cynthia, sons Nico & Sam, husband Manuel
Cynthia, sons Nico & Sam, husband Manuel

I have been a caregiver since my first son was born in March of 2013. My second son was born in November of 2014.

Who do you care for?

I care for my two sons, Nico (8) and Sam (6)

What are some of the things you do for them, as a caregiver?

My older son, Nico was born with spina bifida, so he has trouble with some mobility functions, including walking, and continence issues. He wears braces and sometimes uses a wheelchair for long distances. For my son Sam, he is a very active 6 year old, so I mainly just try to keep up with him! Beyond the normal parenting duties, we have to stay on top of Nico's specialist appointments (he has 3 specialists at CHLA), getting braces fixed when they break and helping him manage incontinence issues. I also coordinate closely with his school, where he has an aide assigned to him to help him during the school day. We have to make sure they have all the supplies they need to assist him there and I often get notified that more supplies are needed or that I need to run to school at the last minute to help them address an issue. Sam has also been getting lots of bumps and bruises treated by the school nurse lately (remember the "very active" part?)! I would be remiss in not recognizing my mother-in-law, aka "grandma." She helps take care of the kids after school and is a giant help.

What have been some of the greatest challenges in your caregiving journey?

Nico has had two spinal surgeries: one at age 5 months and again when he was 5 years old. The second time was very challenging because he spent 6 weeks at CHLA rehab so that he could learn to walk again (spinal surgery can often result in temporary paralysis). My husband and I switched off staying with Nico at the hospital and staying home with our other son, Sam.

What are the most rewarding aspects of caregiving for you?

I think my favorite part is watching their personalities develop and how their life experiences are shaping that. Sam is big-hearted and a huge cuddler; I encourage it because I want him to keep that for the rest of his life! Nico is very smart and doesn't really let his spina bifida slow him down. He will tell you he is the smartest kid in the 3rd grade, so maybe we need to work on humility a bit, but I love how confident he is. I am actually looking forward to helping him navigate the challenges to come so that he can do all the things he wants to in life.

How do you stay connected to your personal passions and interests?

I try to be pretty protective of my "me" time. I usually guard 8-10 pm (after kids bedtime) as time to decompress, which often includes a good book and a bath. I am also trying to be better about getting up early so I have some quiet time to start the day. 5:30 am would be ideal since at 6:30 am I need to be ready to get the kids up and ready for school, but this is not really happening right now! I also have an annual trip coming up with some old girlfriends which I am really looking forward to. Finally, I make it a point to develop quarterly personal goals for myself because at this stage in life, yes, I need to be intentional about having a life outside of work and kids, haha.

How does your family recognize and thank you for being a caregiver? Should Caregivers be recognized and thanked?

My husband, Manuel, also has a very busy job and is in graduate school, but definitely tries to take over with the kids when he is home (he is no longer working remote from home). We make a conscious effort to split doctor visits, school calls, etc. Being thanked feels weird to me because they are my kids – of course I am going to take care of them.

What advice do you have for other caregivers?

I have two big tips:

  • Get organized. I try to have weekly planning time and use a few systems to help keep things on my radar. When there are so many moving pieces, you need a system so things don't get missed.
  • Find that protected time for yourself! Honestly, that is what keeps me sane.