Contributor: Khrystal

Khrystal

Five tips for practicing
self-care

Self-care is essential, especially when you're a caregiver for a medically fragile child. Just as you stop to fill your vehicle's tank on long trips, you must also replenish your energy through self-care.

“If you don't, you'll end up empty, just as your car does.”

Here are five tips I've learned to help me practice self-care in the more than eight years I've cared for our medically fragile SMA Type 1 son, Hunter.

  1. When you practice self-care, you're helping to ensure you can care for others. If you've ever flown on a plane, you know you must put on your oxygen mask before you put on your child's. Why? Because if your child needs you to put their mask on in the first place, they might require you to put it on again. Should you fail to put yours on first, you run the risk of losing consciousness, and couldn't help if your child needed your assistance again. The same is true for self-care.
“It's not selfish to take care of yourself.”
  1. Choose goals and activities that you enjoy, and are important to you for your self-care. Describe your goals with specificity, so they're clearly defined. For example, "I'm going to run half a mile every day for two weeks." The more specific a goal is, the more you know what you need to do to meet it and can feel accomplished when you do. Start with one to three goals and add new ones as you meet them.
  2. Take time to make time for your goals. Set your goals and try to schedule them for the same time each day. It also helps to plan time for your goals as early as possible in the day. This way, you are more likely to complete them, and before long, you will establish a routine.
  3. Make sure your goals are attainable. My long-term goal might be to run a 10K, but I'm not going to start with that as a scheduled goal. Instead, I'm going to set step-goals. After meeting my goal of running a half-mile each day for two weeks, I would increase my goal to running three-quarters of a mile each day and would keep making incremental adjustments. By doing this, I could celebrate several achievements along the way.
  4. Meet weekly with an accountability partner. Choose someone who can make time to discuss your goals with you each week; it helps to stick to the same day and time, if possible. Try to choose an accountability partner with different goals, so that you can celebrate one another's wins without losing spirit if one of you falls short of reaching a goal. In the first week, discuss your goals and how you will meet them. In subsequent weeks, discuss how you did with your goals, what you could do differently the next week to reach a goal that eluded you, and any new goals.

I hope you find these tips helpful in practicing caregiver self-care and wish you success in meeting your goals.

Khrystal

Advocacy evolved: becoming
your child's best advocate

I’m Khrystal K. Davis, mom of five, including Hunter, who is eight years old with spinal muscular atrophy (SMA) Type 1. I participate in SMA My Way because I believe it’s important to be an empowered advocate as an SMA patient or parent.

“My advocacy for Hunter started at his birth.”

Hunter was delivered via a C-section at 36 weeks. A medical team of 12 filled the operating room. All went well, and Hunter and I went to the recovery room with a nurse, my husband and my mom, who is also a nurse.

Hunter’s health rapidly deteriorated in the recovery room. He began to grunt each time he exhaled. Hunter was my fourth baby, so I knew this wasn’t normal. I asked the nurse to observe, but she didn’t seem concerned. Still, I knew something was wrong. I asked my mom, and she tried to assure me, “I’m sure everything will be okay.” The look on her face was far less reassuring than the words she spoke, and she left the room.

My mom returned, and a medical team from the NICU rushed into the room behind her. They quickly whisked Hunter away to the NICU. His condition continued to worsen, and he required intubation for respiratory failure.

I had to learn to advocate for Hunter from the beginning, but the type of advocacy evolved following his SMA diagnosis at eight weeks of age. I focused my efforts on getting Hunter an appointment with an SMA pulmonologist, an expert and asset in the SMA community, and medical equipment to help maintain his respiratory health. The SMA pulmonologist changed everything for Hunter—we now had a team advocating for him. I learned how to navigate as the captain of that team.

His specialist referred Hunter to speech, physical and occupational therapists, and they too became part of Hunter’s advocacy team. He enjoyed and flourished in his therapy sessions. Together, we secured braces, positioning seats and wheelchairs. Unfortunately, access to what Hunter needed wasn’t guaranteed, and we frequently received insurance denials. The online SMA community was instrumental in helping us overcome the denials. Other parents provided examples of what they’d done, and I modified those documents to address Hunter and his needs. I also began to anticipate potential questions and concerns and started addressing them proactively, rather than reactively. It was great, because I didn’t have to reinvent the wheel each time to help Hunter get what he needed.

I never anticipated the extent to which I would need to advocate for Hunter. Others in the SMA community paved the path to advocacy for me and knew the obstacles we would face. I listened, learned and adjusted my advocacy as needed.

“Becoming Hunter’s best advocate was a collaborative effort and I’m grateful to the SMA community for helping.”

My tip: Look for people who are empathetic to help you get what you need for your child. When someone tells you no or demonstrates an unwillingness to help, move on to another individual. Instead of trying to change a person’s mind, look for the right person to help.