As the New Year rolls in and I watch people make resolutions, I realize it’s more complex for me to do so. I wish it were that simple, but that is not how my life works anymore. Instead, as the New Year begins, my head starts to spin. As a caregiver, by the time the year ends, I finally figure it all out and then everything changes. I don’t have resolutions — I have a laundry list of wishes.
So, what might a parent of a medically complex child wish for in the New Year?
1. No changes to insurance coverage, and no more insurance denials.
2. Prescriptions that will just automatically renew — no new paperwork, no phone calls, no arguments. When you go to place your monthly order for medications, the items just magically appear without stress.
3. No broken medical equipment, no backordered equipment.
4. No new diagnoses, since you have just figured out how to deal with what 2019 brought.
5. No overnights at the hospital, maybe instead at a hotel resort where you family can make good memories.
6. Being able to drop a specialist instead of adding a new one.
7. The ability to overcome trauma, and stop your brain from going to moments that have scarred you. The ability to move on from the past and focus on what you need to survive the future.
8. Sleep — even if just one night a week.
9. Strength to dust yourself off, pick yourself up and fight another day.
10. Inclusion for our kids. I wish for the strength to overlook ignorance and keep fighting for our children to be able to do what others can. They may have to do it a little differently, but they should be allowed and welcomed to do so.
11. Our children’s doctors, nurses, and therapists to continue to do their best work and stay with us. Without their support we are lost.
12. Health, not just for our child, but for caregivers as well. When you have no time to take care of yourself, it’s a double edged sword. Sometimes it feels like taking a moment for yourself, could negatively impact your child’s health. If you don’t take that moment, and you get sick, then it can also negatively impact your child’s health. So, you just wish to remain healthy without having to work for it.
13. New treatments, research breakthroughs, even a possible cure!
14. I wish for survival: mental, physical and financial survival, and the strength to step outside of my mind and breathe. As the parent of a medically complex child, you have to be able to be kind to yourself, and you need to be able to work to continue to help put food on the table and have a roof over your head.
15. I hope to continue caring for my son who is not medically complex to the best of my ability. It’s important to make sure he doesn’t feel sad or consumed with fear for his sister, instead I want him to continues to see her as “normal,” and do the things that siblings do –like stealing her toys and teaching her “potty” words.
15. Of course, I wish happiness and health for my family and friends, and the energy to be the best mom, caregiver, and employee so I can to continue to provide for those I love.
16. I wish for time, and the ability to continue to bring joy to my two children. There is nothing like a smile or a giggle from a child. That joy is something you can always look back to when you need the strength to go on, and it’s something that can never be taken away from you. Their joy and smiles are the happiest and most loving moments of life.
17. Most of all, parents of medically complex children wish for health, love, passion for life, and the strength to keep fighting.
It’s a long list, and I’m being realistic, but if we could all at least just have good health and happiness for our family and friends, then 2020 could be considered a good year.
What are you wishing for in the New Year for your family? Let us know in the comments below.