A common question that families of neurologically complex kids ask the June Jessee Memorial Foundation is, “How can we find a solution to securing reliable and trustworthy respite care?” As the mom of a NICU graduate who was born at 31 weeks, I have experience with ICU level care. While this experience does not begin to compare to the journey of families who have children with complex, neurologic conditions, I can appreciate the stress they endure and the resilience these families must possess. 

I remember going back to work when our preemie, Luca, was 4 months adjusted age and feeling incredibly worried about a variety of things:  Would he take the bottle from our nanny? Would he cry all day? I also felt guilty about leaving him.  I worried about all these things even though we already had an existing relationship with our nanny, Lina; she was amazing and had been with our family for 2 years. She was incredibly trustworthy, reliable–and loved our boys like they were her own. Yet I still worried. Now, layer in the incremental stress and worry associated with things like epilepsy, vision and hearing impairment, tracheostomies, feeding tubes, and medications. These issues underscore the importance of having reliable, qualified, trustworthy respite caregivers for our JJMF families. 

We can all agree that parents and caregivers need breaks. As the parent or caregiver of a medically complex kid, time to recharge is absolutely essential. Yet so often, we hear how parents have little to no help to provide the level of care their child requires. Our parents need time to breathe. They need the mental space to rest and reset. JJMF families need respite care–so they may refuel in mind and body–and forge ahead on behalf of their “one-in-a-million” child.

Currently, there are approximately 3,000 children with severe neurological impairment in the St. Louis area. As a patient population, these children have a very wide range of symptoms with varying severity, and no two children are exactly alike. Typically, some of the caregiving needs include helping with mobility issues, feeding issues, seizures, vision and hearing impairment, trachs, feeding tubes and medications, suctioning, and personal care. Many of the parents are not in the medical field or have any specialized background in caring for children with significant needs, yet they learn how to be the very best nurse, doctor, pharmacist, pt, and you name it for their child. 

In an effort to help secure more respite caregivers, several years ago we established a connection with Washington University’s School of Physical Therapy. As part of this partnership, PT students have the opportunity to connect with a JJMF family looking for respite care–and put their classroom training into practice. One student notes how much value he has found in the opportunity to provide care:

“Working respite care while being a DPT student has given me application and reason to all the hours that I have spent in class and studying. It has actually decreased my feelings of burnout by making my time and effort feel more meaningful and impactful.” 

Our goal is to grow this program and establish connections with more area schools and departments (e.g. Occupational Therapy, Nursing) – bringing more trained, reliable respite care providers into the JJMF community–both as a resource for our families and a learning opportunity for providers-in-training. 

I was honored to join the JJMF team in January in a role focused on advancing respite care solutions and feel privileged to play a small role in helping them find respite through their journey. As the spouse of a pediatric epileptologist who specializes in medically complex kids, I have an additional small window through which I recognize the everyday challenges JJMF families face–and I have long admired the organization’s mission. 

If your family is interested in obtaining regular respite care and would like some help finding the right provider, don’t hesitate to reach out. And if you’re in the healthcare field or training to be–and are interested in learning more or being connected to a family, we would love to chat!

– Kelsie Guerriero, JJMF Development and Programs Coordinator