A Reflection on a 2-week Leave
Blessed
Exhausted
Rejuvenated
Scared
As I reflect on the last few weeks, those are the words that came to mind.
Blessed: I feel blessed that I was able to voice what I need and follow through with it. But it didn’t come without a few meltdowns to recognize I needed a reset.
The first was while I was at Nationwide Children’s Hospital in Columbus, Ohio with Dunky for doctor appointments. We flew in Monday for a Cardiac MRI on Tuesday and a full day of seeing all the specialists on Wednesday before flying home that night. On Monday night I got Dunky to bed in our hotel room and then slithered out of bed to work until late into the night, until my eyes wouldn’t stay open anymore. On Tuesday, I rushed back to the hotel after the Cardiac MRI to jump on a call with a client. I agreed to take Dunky to the zoo but could only fit it in between the emails I had to get out and the client call I had at 6 pm. We went, and it was fun, but it was rushed and I was preoccupied. How was I going to take my client call and make sure Dunky got dinner? I’ll figure it out, I always do, somehow. We were back at the hotel and I’m prepping for my client call and then the results started flooding in through My Chart. I was waiting for the results of the Cardiac MRI as the ejection fraction (EF) is the true indicator of heart failure and the MRI would give us this result. His baseline one year ago was 53%. In Duchenne, we pray for stability, typically not improvement. The results coming through were lab results that they took when they were doing the Cardiac MRI. Naturally, I started studying them, focusing on the red (abnormal) markers and quickly trying to determine if they were abnormal last time. Then pivoting to compare them to Caleb’s to understand if Dunky is worse off than his older brother in these areas. Wait, but what do these even mean? Do we care that they are abnormal? Troponin levels are abnormally high. I sure don’t remember seeing that before. Google. Quick. Before my meeting. F. The tears start streaming. The heart starts beating. Elevated troponin levels = heart damage. This isn’t really new news. I know that Dunky’s heart is ridden with Cardiomyopathy (scar tissue), in fact it takes up more than 50% of that cute little heart. But this was another way of confirming this and another reminder that this disease is running through my sweet, little, Dunky. Crap. My meeting. I wipe the tears, I set up Dunky with his iPad, tell him to not talk for an hour and log into Zoom. How will I get through this? I’ll figure it out, I always do, somehow.
But this doesn’t seem right. I want to cry to my husband, I want to call the Cardiologist, I want to work through my feelings and mostly, I want to focus on being present with Dunky But then I get through my meeting, those feelings get swept under the rug, and I carry on, until it happens again. Despite Dunky’s ask for sushi, we end up at hotel restaurant for dinner because now it’s past dinner time and closing in on bed time. I get Dunky to sleep and stay up late into the night again, but this time it’s to recap Dunky’s health from head to toe and list out all my questions in one big document that I send to his care team prior to our arrival the next day. Wish I would have prioritized this a few days ago so they would have time to digest it, but I didn’t.
Fast forward a few weeks, it happened again. I was heading to a work conference where I was going to be gone for 3 nights. I took the last flight out so I could help with the boys as much as possible because two wheelchair bound boys is no joke. This meant a very late arrival, and I knew I would be exhausted, but it’s what my mom heart wanted to do. But then I get to the gate and it’s delayed, and then delayed again. And the tears start flowing and don’t stop. How will I get through this? I’ll figure it out, I always do, somehow.
But that was the break-down that catapulted conversations. I was not impressed with myself and my decisions. I was prioritizing work over my own well-being and my boys. I feel blessed I was able to recognize my needs and take some action.
Exhausted: Caregiving is exhausting and being a special needs mom when you are home is also exhausting. It is constant asks, things that most kids that are 10 and 11 can do themselves, that Caleb and Dunky can not.
“Mom, I have to pee.”
“Mom, I have to poo.”
“Mom, I need a tissue.”
“Mom, I need my iPad.”
“Mom, I need a snack.”
“Mom, the remote fell.”
“Mom, sit me up.”
“Mom, scratch my head.”
“Mom, scratch my back.”
“Mom, fix my shirt.”
“Mom, I need a bandaid.”
“Mom, I need socks on.”
“Mom, I need a blanket on me.”
“Mom, brush my hair.” Okay, that’s a stretch. Fun fact, Dan is the hair guy. He would never let them leave the house without their hair brushed. He’s quick to spray and brush upon waking up. Me? I don’t think I’ve ever brushed their hair. I don’t even notice it. It’s like when I wonder how Dan doesn’t notice the socks in the middle of the floor, he wonders why I don’t notice the disaster of their unbrushed hair.
I love my kids, so deeply, but man is it exhausting to adhere to their needs.
Rejuvenated: My heart was so full by spending time with my boys. The joy I felt when they would ask, “do you have calls today?” and I got to say “no” was amazing. These boys fill my cup like nothing else can. And my life coach tells me when I fill my cup, I will be able to better support them and others. One day I was able to attend Vacation Bible Camp with them (they always need a bathroom helper) and I left it tears. It was so special and rejuvenating and I’m so glad for our Our Lady of Peace community. Caleb and Dunky help me realize that life is short, so it’s important to live to the fullest and live in the moment.
My favorite thing we do is go on walks. We walk to the coffee shop, to the beach, to Target and to many of our favorite local restaurants. And we are a scene. Two kids in power chairs, usually blasting Eminem, with a mom trying to keep up. We often get stared at with “under the breath” comments. Just today when Caleb and I were at Target I overheard someone say, “Look at that kid, why is he driving?” I heard it, but I didn’t know if Caleb did. Then I heard him respond, “Kid, I don’t like your attitude.” It was an odd response, but it was an odd comment. The more typical one we get is “Cool wheelchair, I wish I had that.” I’m positive you don’t wish you had that.
But we also get smiles, so many smiles. I’m rejuvenated by those smiles and that is what I’m going to take with me.
Scared: One amazing thing about not working for 2 weeks was the added time I got with the boys that I don’t usually have. Yes, I am blessed, exhausted and rejuvenated from that time, but I am equally scared. What I got to witness are small progressions of the disease that I don’t often see when I’m preoccupied with work. To name a few, I noticed:
Caleb has to lift his leg with his arm to get it on his wheelchair foot pedal.
Caleb has to use his fork so close to the tines that it’s almost a shovel.
Caleb asks for plastic silverware, that is lighter and easier to maneuver.
Caleb’s feet are naturally caving in. I’m constantly nagging him to straighten his foot.
Although Caleb is getting too heavy to lift, the muscles under his armpits make it next to impossible to lift him without equipment, even if I wanted to.
Although Dunky is still fairly easy to lift, the muscles under his armpits are also starting to go.
Dunky now needs to be sat up when he is laying in a reclined position.
Dunky’s heel cords are so tight that he can’t get even close to getting his feet flat.
I’m scared because this disease is taking them. I feel it and I see it. But I’m also scared that I’ll go back to work, like this leave never happened, and nothing will have changed. I’ll agree to do things I don’t want to do or don’t have time to do, I’ll prioritize work over my family and myself, I’ll chase the next promotion and I’ll fall back into the grind. And then I’ll look back when my kids are gone and think, “what the f was I doing?”
So I’m just not. I’m committed to being present and intentional. I will say no when I need to and look at it as a skill vs feeling guilty about potentially not pleasing someone. I will say yes to watching the most ridiculous You Tubers with my kids. I will say yes to the walk to Dairy Queen with my kids. I will say yes to playing Roblox with my kids. I will say yes to learning about all of their skins in Brawl Stars.
And I will continue to say yes to Duchenne advocacy efforts to help move the needle on this disease so that other parents don’t have to watch this disease run through their kids like I have to.
7-12-25
