What Care Leave Time Looks Like for Me
I am at the halfway mark of my care leave, 6 weeks down, 6 weeks to go. But unlike I do on vacation, I am not trying to keep track of when it’s over. I’m staying true to my commitment to myself and just being. I’m present wherever I am doing whatever it is I’m doing and not thinking about what comes next.
What I Thought It Would Look Like
Early mornings to get up for intentional moments of gratitude before the house woke up with a cup of coffee that would be prepared the night before so I could just push a button
2-3 days I would get up for 6 am yoga or a run
Bike to the coffee shop to read and/or write
Come home for the late morning/early afternoon activity I had planned with the boys
Prepare homemade dinners that were planned during the weekend for the upcoming week
Night walks with the boys with a stop for ice cream, where both boys would settle for the same place (we are spoiled with too many amazing options nearby!)
Read with the kids before they happily went to bed at the same time they did during school (7:30 - 8)
Hang out with Dan on the patio and chit chat about the amazingness of our family.
Sprinkle in lots of dr appts for the boys
What It Actually Looks Like………………180 Degrees Different
The above was thrown out the window week one and honestly, I’m happy that my articulated plan didn’t come to life. It’s forced me to be nimble and not be stressed about the plan I would try to make come to fruition.
Turns out I like sleeping, I never gave myself permission to sleep because of work, so I didn’t think I needed it. I was wrong! I like getting at least 8 hours of sleep, especially because it is interrupted by kids needs anywhere from 2 - 10 times a night. Dan and I trade off nighttime duties and it’s funny to see which of us ends up with just “I need a sip of water” and the other ends up with a full-scale sheet change and jammie change. It wasn’t until this leave that I gave myself grace to admit I need sleep because our nights are always interrupted and different than before, I’m grateful to be able to help them without resentment. I don’t have a 7 am zoom call that I not only have to be “on” for but I have to get ready for. My kids need me and deserve me.
I’m so happy that I was able to say yes to something my sister and I have chatted about for a few years. My sister is my best friend and has two boys, one that is 13-years old (Vernie) and my kids think he is the best human to step foot on Earth, they truly just adore him. I always kinda jokingly said, “let Vernie stay for a bit in the summer” but was never able to make that happen as what that really meant is I could execute the planning, but everyone else would be responsible for the extra child because I was working. Until now. Vernie spent most of July in MN with us and it was a dream come true. It wasn’t always easy to have an 11-, 12- and 13-year-old boys under the same roof all the time, but we did so many fun things together. More importantly, Vernie was so helpful! I forget what typical kids that age are capable of, but he demonstrated that so nicely. He could get his own breakfast, he would jump up to help the boys go potty, he could brush his teeth on his own, the list goes on and on. A true gift of leave that I could give to my boys and my nephew, the gift of time together.
The appts and insurance fights remain. They have to happen even when I’m working, but now they happen without stress of the time that I’m losing where I could have been working. I call and wait on hold for 28 minutes while I’m out on a walk and instead of cursing that it’s taking so long, I just enjoy my walk and patiently wait for someone to help me. I have no stress of scheduling appts around a work schedule that has me in meetings all day weighing which ones I could reschedule or miss without disappointment. More details to come in a future blog about how the boys are doing living with this disease.
Dan and I have spent more minutes together since I’m home, but we still recognize when we may not be seeing eye to eye and we need a break away from the kids. To keep us connected and on the same page, we schedule quality time, without kids. We are grateful for the few people that help us make that happen.
I’ve been trying to capture on paper moments of joy each day. It’s been interesting to go look at these over the course of my leave. I hate to admit that most of them early on were about things I had done, not things of beauty I have witnessed. But that has morphed over time, and I know that I need to continue to focus on beautiful things, not the things I have done. For example, early on my joy moments were “framed and hung a poster” or “scheduled Dunky’s doctor appt” but yesterday it was "snuggling with Dunky upon waking” and “coffee with Dan on the patio.” That is what this care leave is about.
I’ve had this idea of running a marathon again, just one more. I’ve ran two, one before kids and one after kids but both before Duchenne started to demand so much of us physically. I’ve been running plenty of 10-mile and half marathons but hesitant to sign up for a full until now. Training takes time away from my kids and my family and I don’t typically have tolerance for that when I’m working as I feel as if my time is already so limited. I contemplated this decision at nauseum and finally realized, if not now, then when? It was a perfect opportunity. It’s such a wild ride to train for a marathon. I dread and look forward to running for 3-4 hours at a time each week. Sometimes I think, why the heck am I doing this and what is the point? But when it’s really hard, I think, I’m doing this for my boys and they do way harder stuff then put one foot in front of another.
Reading. Not just self-help books. Actual books that draw me in that I want to keep reading. I’m officially no longer the person that only has time to read when on vacation. I’m prioritizing leisure reading into my days and loving it!
I’ve had SO much fun planning things to do with my kids and actually doing them. When working I may come across fun things, but the task felt too daunting, or I didn’t want to commit to something on Sunday, the sacred day before the work week started. We have done so many fun things right here in our own community. And as much as my kids complain when they have to do something, they always do better if they have had an outing for the day. This has been the most rewarding part of my leave. Time with my kids, outside of the home. It fuels their soul and fuels my soul.
This leave has taught me so much about myself. It’s taught me what I need and want. I feel so incredibly blessed to have this time with my boys. It’s emotionally and physically exhausting, and I wouldn’t have it any other way.
