Weird question, right? I mean, usually this would be a statement, like, "That's cool she went to that concert with friends." But one mom in New Mexico got judgment when she did just that. She's not just any mom, though. She's been told she's a "supermom" and that people "can't imagine" how she can keep it all together. She is a wonderful human being, she is a mother to a child with many complex medical needs, she is endlessly selfless. She has spent most of his life in a hospital with him. She has spent many days watching him suffer, and probably can't count how many times he almost died. Of course she deserves to go to a concert with friends when her child is finally doing well. Of course she should get a break from caregiving when she can, but that's not how everyone sees it.
The above image shows concertgoers with hands up and a stage in the background.
Why Do Family Caregivers Need Respite? Can't Grandma Help?
Parent caregivers to children who have medical complexity and fragility often run the equivalent of an intensive care unit in their homes. They may have ventilators, oxygen, monitors, round-the-clock medications, and tube feedings to give. They are expected to function at the same level as an entire medical team in the ICU (MD, RN, CNA, RT, OT, PT, SLP, cleaning and kitchen staff), but as one person. They often get just minutes of sleep at night, no rest during the day, and still try to be mom/dad, husband/wife, sister/brother, and friend to others. When you see them out and about, they may seem a bit tired, but they always smile and seem at ease with their lives. It seems like they have it all under control.
Above Image is an example of 48 hours of medications for a child with medical complexity (several bottles, many syringes filled with liquid).
Imagine never being able to shower or sleep unless you have a replacement caregiver for your child. Imagine the stress of wondering if today will be the next emergency situation that takes your child's life and that their life is literally in your hands. Imagine fighting for homebound school services and getting an hour or two of educational services a week. So now you're in charge of your child's education and medical care, and there's no time to just be mom or dad.
I remember tears filling my eyes every night because I knew I would witness my child suffer and struggle all night long and that there would be little I could do about it. I remember starting the mornings hoping that somehow I could find the energy to help my other children have a good day, experience a quality education, or even just have a little one-on-one positive interaction with me. Would there be time? Would I have the energy to keep going like this? Would we end up in urgent care or the emergency department again today? I remember not knowing how I survived this long, or how much more I could take before my body would refuse to keep going at this ridiculous level of functioning.
Above image shows an emergency department entrance with an ambulance out front.
Many people would tell me that I "chose" this for myself (my son was adopted), and in a way, we do choose this. We want our children home with us, out of institutions and hospitals. We go to extremes to keep them home with their loving families. We fight long and hard as advocates for better nursing pay (to help with the nursing shortage), more resources, and more accessible community spaces. We voice our concerns that almost no public spaces have adult changing tables, so we have to go home when we need one for our growing children. We would rather fight these daily battles than not have our children grow up in a family. The move away from institutionalizing people with disabilities was a good one. But society hasn't found adequate ways to support the families caring for these individuals. The resources available are not enough.
We need respite, we need a shower, we need a full night of sleep to keep going. But not just anyone can provide the highly skilled care our children need (grandparents, neighbors, and regular babysitters are often uncomfortable taking such heavy risks to care for these precious children). Medicaid waiver programs often have a respite benefit for families to access, but the reimbursement rates are too low to cover the costs of 24/7 nursing care, and the nursing shortage blocks access to these services anyway, so there are no providers for respite for children with skilled nursing care needs in New Mexico. Hero's Path Palliative Care is the only organization providing respite care for these families right now, and they rely on grants and individual donations to do so. In 2024, Hero's Path was able to offer 3 respite events. The second event had a waitlist, and the third one is about to be scheduled and is also expected to have a waitlist. We at Hero's Path are desperately trying to scale our programs to meet this enormous need. We need funding. And since we don't have a physical location of our own, we need partners to provide a space for us to host these respite events (again, we need funding to build or rent a more permanent location to meet the growing need).
Barriers to Respite (besides $ and nurses)
Family Barriers:
Judgment from others
Judgment from ourselves
No resources or services are available (no safety net)
Fear that something bad will happen if we take a break
Lack of trust in others
"Had a family member tell me she was worried that I am “going off the deep end” because of the photos I’ve posted recently (going to concerts with friends).
Ma’am, I am finally LIVING. I’m enjoying a summer for the first time in 6 years. I’m taking advantage of my son's lack of hospitalizations and I’m trying to make the most of my waning youth. I’m trying to figure out who I am outside of “mother/caregiver” and C-PTSD, and things haven’t been feeling, “so bad.”" - Local NM Mom
Respite Provider's Barriers (Ok, for Respite Providers, the barriers are mostly $ and lack of trained staff):
Lack of adequate insurance/waiver reimbursement
Lack of highly trained, skilled staff
Lack of appealing accessible spaces that are designed for these children
Liability insurance costs are sky high (high organizational costs that many funders and donors don't want to help cover)
What We're Doing Right Now to Help Support Families
Educational events, Short-break Respite, and Psychosocial support
It's a big task getting your child out of the house when you are in survival mode. When the child comes with oodles of medical equipment and wheelchairs, it's even harder. We provide outdoor nature-based educational events (after school programs and weekend outings) and support the child and family by having extra hands (nurses and volunteers who are specially trained to work with children with medical complexity). We ensure that mobility challenges are eased, and that children also have support in regulating through music therapy. Being in nature can be very healing to families, and our program is designed to help families reconnect with each other and form meaningful happy memories with each other.
Image of a boy in a wheelchair near sunflower fields with a dog on his lap. A music therapist works with sound tubes with him and another child.
Our respite events are hosted by wonderful sponsors like UNM Health Sciences. They provide accessible spaces, funding, and help with volunteers to ensure families can get a break. We again have supportive nurses show up to ensure children are comfortable and supported. Families are able to send the child with medical complexity and their siblings to our respite events. We focus on providing an engaging environment where the children can experience fun activities with each other, fostering fun memories and healing. We often have music therapy and psychosocial support (play therapy) to help children with any emotional support they may need while the caregivers/parents get a short, much-needed break.
Image of a smiling, happy girl in a wheelchair working on worksheets for a scavenger hunt.
Lastly, we strive to support families where they are at. That means if a child is homebound or hospitalized, we go to them to provide these services. It also means having Dr. Korie Leigh offer her counseling and coaching in a way that makes sense for each family. Sometimes that's a quick text exchange during emergencies. Sometimes it means going to the home and creating legacy projects to help families and children process death and dying. Each time, the process is specifically curated for the individuals in the family. One time, a teen created beautiful songs with Dr. Korie; we brought a recording artist to her home, and the sibling and the teen recorded the songs. These songs help the family process the teen's journey in legacy-building ways. Every family is handled with care and compassion. Coping skills utilization, stress reduction, and making meaningful memories are some goals we achieve.
Image of a girl in a wheelchair next to a keyboard, recording equipment, and a ukelele.
Where We Need to Go As Soon As Possible (the Need is Urgent)
We celebrate the services we have offered our community in the five years we've been a nonprofit! We have so much left to do to meet the ever-growing needs.
We would love to build a respite/hospice house for kids in the Albuquerque area. The house would be modeled after Ryan House in Phoenix. This house would be a home-based pediatric palliative care hub as well.
The above plans will take $Millions, so in the meantime, we plan to expand our current programs to include a summer camp, more respite, more counseling and coaching, and more educational programs. We are also helping to design and build a fully accessible sensory trail at the Biozone Educational Center on the East side of Albuquerque. We hope to be able to continue to expand access to the outdoors through grants we're applying for.
What we need
We can only expand as much as we have funding for. For instance, each respite event costs about $2000. The number one barrier to expanding our programs is funding.
We also need sponsors for where we hold our respite events. Spaces must be fully accessible with accessible bathrooms. Having an accessible outdoor space is a bonus.
Lastly, we need advocates. We need people to join our board. We need people who are willing to spread the word about what we do, how we help, and ask friends to support these families. Together we can do much more.
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