Love is a beautiful thing. Love can grow immeasurably, love can give you the strength to endure great pain, and love will help you do things you never thought you would, or could do. Love will keep you from giving up, when things are too hard to face. Recently, our sweet boyo started having a new after affect condition. If you’ve read my blog, you’ll know these are conditions that appear later in life from treatment for childhood Leukemia. I won’t explain what that condition is right now. He’s in his 20’s and I want to respect his privacy. However, it’s not life threatening at this time. It’s just another difficult after affect, that we didn’t expect.
The cure for childhood cancer comes at a cost. First they have to endure treatment and survive it, then there’s a lifetime of after affects. I know I’ve spoken about those after affects many times here, and yet, every time we discover he has a new after affect to deal with, we find ourselves unprepared. I feel like each time as soon as we adjust to the new challenge, we figure out how to support him, to help him have some quality of life, a new one comes along and takes my breath away.
Each time this happens without fail, love saves us. Love for our boy, love for each other. When we look at our lives, we remember all the love we have and for love, we will keep on in the fight. I remember, that I will use every breath I have left, to take care of my boy. Over the years, I’ve discovered that to keep up the strength to be a caregiver as a mom, I need to do some self care. There was a time when I didn’t understand how important self care is, I felt it was superfluous, but I’ve learned that if you don’t care for yourself, you have nothing to give to anyone else.
It took a long time for me to figure out how to care for myself, so that I could take care of my boyo. What I’ve learned is, that it changes with whatever is going on at the time. Now that it’s been 17 years since he got sick, I can look back and see what was useful and what wasn’t. Right now, I do different things to help me do what I need to do. I thought I’d share some of those things. While what my boyo goes thru is really too hard, and I marvel at his endurance, patience and strength. I can’t tell you how he does that, because that’s his story. What I can do, is tell you my story and how I try to keep up my strength to lend him the strength he needs.
The first thing is a good bed. Sleep is absolutely vital to keep up your strength. (and a sweet little doggie helps too)
As I sit writing this, I have to confess that it’s 2 in the morning because I couldn’t sleep from being worried. That’s ok tho. It’s important to be flexible about what you need. I know that I don’t have to go anywhere early tomorrow, so I can sleep in a little. Right now I need to express myself.
Back to sleeping tho…. I need really soft sheets, and a fluffy comforter. Of course, we moms respond,….. I can’t afford luxury linens! That’s where a little creativity comes in. Hunt bargain stores, you can find really nice linens at Marshals, Tj Maxx and Tuesday Morning. Also second hand stores, you can find nice linens there too, all you have to do is run them thru the wash! I’ve found one of the best tools I have, is a comfortable bed. When the kiddo was first sick I didn’t have a good bed, but I worked at getting one. I would take Sunday afternoons to sleep. While the kiddo was going thru treatment I slept only 3 hours a night. It was a grueling 3 years, and since hubby was always home on Sundays. I would crawl into bed and sleep for about 6 hrs. Honestly, I felt bad about that, not being present on a free day with hubby and kiddo, but if I didn’t get that sleep I wouldn’t be able to care for kiddo the rest of the week. I’m grateful that hubby was able to take care of the kiddos needs while I slept.
With the new challenges we have now, I still have to prioritize sleep. I’m older now, and I find my strength gets used up quicker than it used to, so sleep is very important. It depends on each person as to how you do that. I find that I have to find the time to get the rest I need. That’s my first tip on self care. I’ll be writing more tips on what I do to care for myself. I’ve found it’s not just one thing that works, it’s a variety of things that help. Also, our lives are super busy just like everyone else’s, so the things I do are small bits here and there, but I have to keep doing them or I find my strength waning and that is something I can’t allow to happen. There’s a condition called caregiver burnout, it’s when you’ve been doing it a very long time under stress and you haven’t taken care of yourself. It’s a condition I want to avoid at all costs. These things I do, are to help me to stay strong and care for my boyo who needs me.
I call these posts mornings with Molly, because I discovered that when I sit outside in the mornings with her I have a chance to meditate on things, and what I need to do next. Today, I’m grateful for a funny little dog who is lying by my feet as I write this. I hope my tips as I write more of these will bring you some comfort as well. I’m going to go get some sleep now and when Molly wakes up we’ll play again.
“Everything will be alright in the end, if it’s not alright. Then it’s not the end.”-John Lennon