Rarely do my days flow without any hiccups. Challenges and obstacles are more the rule than the exception. It is easy to go down the rabbit hole of negativity. The martyrdom life is not a hard sell for extreme caregivers. Because it is easy to complain and wallow in self-pity, I make it a practice to look for the good in each day. It isn’t always easy, but I can always find something (or three) to express my gratitude for in my life.
In the spirit of gratitude, I decided it was time to create a caregiver list of gratitude from A to Z. This list includes things that make our journey easier. It is only a few of the many resources, programs, skills, traits, and people that I am grateful for on my caregiver journey.
- A is for adapting equipment from AAC devices and leg braces to wheelchairs and tomato seats.
- B is for the Brave Together podcast, and We Are Brave Together organization that supports moms by providing resources, connection, and respite.
- C is for chewy necklaces. My daughter is constantly chewing on something, and this is a safe way for her to do that. (Bonus: I can find them easily in every color to match almost any outfit.)
- D is for Diapers.
- E is for EEG studies. (Not for the study itself, which is not always easy for our kids, but for the data it provides families and the care team.)
- F is for friends and family who support us. The ones that bring the ladder when you are stuck in the trenches.
- G is for granola. When life is hectic, I love that having a little granola fuels my body and makes me feel like I am making a good choice.
- H is for hospitals and emergency medical care. You hope and pray you never need them, but are grateful it is there when you do.
- I is for insurance. As much as I complain about the process, I am thankful we have it.
- J is for juggling. All the juggling caregivers do each day to make the important things happen.
- K is for kindness. It is free and abundant, yet, it can be rare.
- L is for this beautiful, wild, and crazy life.
- M is for medication. Emily relies on medication to sleep and control allergies and anxiety. I am grateful they have improved her quality of life. (As well as the lives of those she is around.)
- N is for noise-canceling headphones. These are definitely a must-have.
- O is for orthotics that help Emily to do transitional walking and align her feet properly.
- P is for physical therapy. Emily doesn’t go to PT anymore but I am grateful for years of PT that helped her meet her full potential.
- Q is for quiet moments.
- R is for respite and rest. I cannot do this job 24/7 without taking breaks to recharge.
- S is for science. This year, thanks to advances in genetics, Emily got a diagnosis at 22.
- T is for technology. Thanks to technology I have connected with caregivers around the world. What a freaking awesome gift!
- U is for unlearning. I have unlearned as much as I have learned on this journey, and I am grateful.
- V is for velcro.
- W is for wipes.
- X is for Xanax. A medication that helps regulate Emily’s anxiety.
- Y is for yogurt. Yogurt and applesauce are the conduits to getting medication into Emily’s body. I am grateful for these soft, easy-to-hide pills in food choices.
- Z is for zebras. Did you know the zebra was chosen to represent a rare disease? It is based on a quote from Dr. Theodore Woodward: “When you hear hoofbeats, think horses, not zebras. When you hear hoofbeats behind you, don’t expect to see a zebra.”
My level of joy and contentment increased as I created this list. It is a powerful exercise. I want to thank Jay Armstrong for his unique gratitude list he shared in the Gratitude Journey Volume 3. It inspired me to write my own. I definitely recommend this book to help grow your gratitude practice. Gratitude definitely creates more joy in the journey. I cannot wait to hear other caregivers weigh in with their list.
Conversation for Change 