How I knew I needed to take a leave from work.

I just finished my 3rd week of leave from work. I had all these ideas of exactly how I was going to spend each day, and I’ll just say that caregiving for 2 boys with a terminal, muscle-wasting disease, does not allow you to dictate how any one day (or even minute) is going to go. So, I’ve thrown out my agenda, and instead focused on being present no matter what I am doing.

I have known deep down that I would need to step away for longer than the two weeks I’ve taken 2x over the past 3 years. But I didn’t know when. A part of me thought I had to wait until something really bad happened to one of the boys, maybe then I could justify it? There was always another client project I wanted to finish and then another client project that would start. There were colleagues I didn’t want to disappoint. There would be a new role that I would start and needed to prove I could conquer. There would be promotions I was striving for. There was always something getting in the way, including the feeling that I could always just continue to push through. I mean I’ve taken that approach since the boys were diagnosed in 2018, and it’s worked……kinda, I think. But maybe it wasn’t working and I did not want to admit that, until I had to.

Caleb and Dunky’s health is declining by the minute. At 11 and 12, they are more progressed than anyone thought they would ever be and I’m literally watching Duchenne take things from them daily. Duchenne is taking their ability to scratch their head. Duchenne is taking their ability to lift a utensil to eat. Duchenne is taking their ability to get on an airplane to travel. Duchenne is taking their ability to hang out with friends without someone nearby to help with toileting. Duchenne is taking their freedom to do as they wish. But it sure as shit wasn’t going to take the ability for them to spend time with their mom because she was busy working. Oh, hell no, you can’t win on that front Duchenne.

There were a few red flags that signaled I needed to do something different.

1) I showed up at the airport for work travel on THREE different occasions within a few weeks of each other without my ID. The first time I didn’t notice until I was in the Clear line and got a random ID check, to which I didn’t have it. That time I called Dan and he drove my passport to me because I had zero clue where my ID was (it was in my running backpack), leaving the kids alone with a “pee machine” (aka handheld urinal) for longer than we were comfortable for, but work called and I had to make this flight. The second time I also didn’t notice until I was about to get in the Clear line and it was early so Dan leaving the kids sleeping was not an option. Another Uber ride to take me back home to get it. I made it but it was stressful. The third time I noticed right as my Uber was pulling up to the airport. I added two stops to my ride (home and the airport again) and all the sudden my easy and quick Uber ride from South Minneapolis to the airport became expensive and stressful. “Get it together Sarah”, I kept thinking, but I couldn’t, I was doing too much.

2) I found pride in demonstrating I could do it all at any given moment. But I couldn’t, and a very scary accident threw that in my face. I was driving Caleb to school after Physical Therapy and never gave my calendar block enough time. Nearly every week I would have to jump on a call while still in transit with one of the boys, but I thought it was fine. I often did the same on the way there and even when they were in session. Yes I have two boys slowing losing their life, but I kept jumping on those conference calls. There was one day I had jumped on a call at 9:30, tried to ask Caleb not to talk, dropped him off about 9:35 at school and told those on the call I could be on video in about 5 mins (we live 6 blocks from school). I pulled our handicap van into the left side of the garage hoping I was gauging the beeping sounds appropriately, so I didn’t hit something knowing I really wasn’t paying much attention to them, but success. That overpriced beast that can fit 2 power wheelchairs was parked next to our brand-new car that lived on the right side of a very small, South Minneapolis 2-car garage. I gathered my things as I exited the van (still on my conference call) and unknowingly (because I wasn’t paying attention) pushed the wrong button. All of the sudden the wheelchair ramp was deploying, and I was in between the metal ramp deploying and our new car. I didn’t have time to jump out before my legs were taking the brunt of the wheelchair ramp metal edge (still on my conference call). I screamed and cried and asked my colleague to call my husband because I needed help and then hung up. For a split second, I literally thought this ramp was going to sever my legs, and I would join my kids in a wheelchair, but hell no, that wasn’t an option. So I reached down with my arms and put as much force against the ramp as I could so it would stop. It felt like ages, but it finally did. I was stuck but pulled my legs out and by the time I got inside my amazing colleague (who would have no clue my husband’s phone number despite my screaming request to call him for help) had managed to contact HR who helped get Dan on the phone. Yes, I was in pain as my shins and ankles were scratched, bruised and bleeding, but I was in more pain knowing that I was trying to do too much, and I was failing.

3) I started being resentful. Sunday nights were the worst. I spent my Saturday’s thinking about if I should do any of those things I was supposed to do that prior week that I didn’t have time for. It hung over my head most of the day but 99% of the time I would forfeit them for Sunday morning. Then I would refuse to let work get in the way of my Sunday morning yoga, and then it almost always turned into Sunday night after the kids were asleep. Often, I was too tired then so it would turn into 4 am on Monday morning. I particularly remember the feeling I had on Superbowl Sunday. I lost it because I imagined the rest of the country watching football while eating wings and maybe indulging in a beer or two and here I was in the corner of my living room at a little desk with my back to the game, “watching the Superbowl”.

In my line of work of healthcare consulting, at least for me, multi-tasking is hard. Most deliverables require focused time and brain power for a good outcome. So, while many working parents may be able to get a few things done on the weekends with similar-aged kids (11 and 12), that was extremely difficult for me. There is no sending the kids outside to play. There is no play date that can be organized at other houses. There is no asking them to get their own snack. There is no handing them $20 and telling them to ride their bikes to the nearest place to grab lunch. There is not typically even 10 minutes that can go by without one of the boys needing something from someone. Sometimes I think of it as having toddler twins. Constantly needing an eye on them and while somewhat manageable with one adult, it’s much easier with two.

So, I started saying out loud to my family and friends, “I think I need to take a leave from work.” I couldn’t believe I was able to muster that out. I didn’t really want to, but instead, I knew I needed to. Not only did I need to for the sake of my boys, but I needed to preserve my health before things went south. I couldn’t continue doing what I was doing and give my boys, my husband and myself what was needed, which was undivided attention, presence, no matter the situation.

So here I am. Incredibly blessed that this is a viable option for our family. These last three weeks I have put more smiles on the faces of my friends, family and myself than I think I have in three years.

If you are feeling overly stressed or strained, I encourage you to pause and just recognize what you need. Then try to make it happen. I’m so glad I did. Recognizing what you need is not a sign of weakness, but rather a sign of self-awareness and power.