I have had this post in my draft for a couple weeks. Tom is feeling much better, so I pondered whether I should post it. I didn’t want to make what was happening to Tom about me. However, as I kept rereading my thoughts during this time, I wondered if others would resonate who have had to be the caretaker. When there is a medical crisis, there is more affected than just the person in the center. And as it should be, the focus often is on the person going through the medical situation, but the family is very much in the thick of it. Many folks have asked how we have been navigating this, so I figured I would share how it has been for me and the kids through Tom’s health journey. It’s a lot more than what you would get if you asked me in person, so I hope that you are ready for more than, “We are making it and surviving.”

In short, the kids are resilient as all get out. They have been real troopers through all of this. I feel like we have been appropriately transparent with them. Tom’s decline was very apparent, so it was not something we could ignore with them. Because Tom has been an active dad, his bedrest and symptoms could not be hidden. So we have had to be honest with them over the last few months. There were many days where our nightly or weekend plans had to shift suddenly to get Tom to the hospital. I hate that they had to get use to us just dropping everything with an unknown return time/date. So because his health was unavoidable to see, we did have some very hard conversations about his health.

We talked about doctors, medicine, and yes we talked about death. Tom and I decided that we did not want the kids to be blindsided if something dire were to happen, so we wanted to be sure we kept them updated as the days, weeks, and months went on. Again, we tailored it to our kids, and gave them space to feel feelings and ask questions. We have tried all along to be open with our kids, and we felt it would be untrue to who we were to keep them in the dark.

For the most part they have taken things like champs. They haven’t complained about our lost vacation or other summer plans. They have taken on different responsibilities when asked. I have had several conversations with them about how we are a team, and sometimes that means we have to do more when a teammate cannot. While some of those moments have not been my proudest, and I may have guilt-tipped them into better behavior because I was going at it solo, they really have been rock stars. They really have stepped up to fill a need as best as their young souls could do.

It hasn’t been all roses, and we have tackled more emotions and dynamics in parenting than I figured we would in the first decade of this journey.

Wally is our wildest three year old. His personality and temperament is nothing like we experienced with the other two. Not having Tom to be physically present has made it harder, and I think Wally can sense that we are a man down so he pushes buttons more than anyone I know.

Daphne has had some dark moments. She has asked some of the hardest questions. It is a punch to the gut when your seven year straight up asks if her dad is going to die or come home on a regular basis. I barely can process it myself let alone help her process it. But we waded through the mess, and I have to say I am glad that we were honest, because it has helped us address different emotions and how we can lean on each other. Daphne is my most complex with emotions and we are often on a rollercoaster of feelings, so having moments where we can just be sad together have been healthy for us to process being human even if it was dark to sit in the hole together.

George is Tom’s little sidekick, so I would have thought he would have taken it the hardest. He is clingier than he ever has been, which is saying something. The boy’s love language is physical touch, and he needs to be in others spaces all the time. However, George has been phenomenal through all of it. He has been like the cheerleader we all didn’t know we needed. He prays for Tom regularly, and he is always talking so positive that the doctors were going to find him a cure. He talks to Tom regularly about what they are going to do once Daddy has his energy back. It’s like he was willing it into the universe as the only option. He has made comments to me like, “Mom, I am going to take care of you and make sure you aren’t alone until Daddy is back.” George has been the beacon of hope the whole time. He has had his tearful moments, but it was like he always knew Dad would just get better.

We made sure their teachers and school counselors were aware of what was going on, and they wrapped them in love and support while they were at school. While it was hard to communicate the scariness the kids were experiencing this summer, we are very fortunate to have the educators that we do to help pour into our kids.

We have also tried our darndest to still let them be children. This is heavy and awful, and even though we have been honest, we also didn’t want to rob their childhood. We have been trying to keep up with our schedule as much as possible with their activities and camps, and our nightly dinners together. We play UNO every night before bedtime, and we are always curating a list of new movies for our weekly movie nights. We have gone swimming, ate McDonalds, caught fireflies, jumped off a dock into a lake, and took day trips around the state. It has been my mission to still do a normal activity with them every day. There have also been days where bedtime didn’t exist or there was more screen time than not; all things we will navigate scaling back once school starts. While they will remember their dad being sick, we didn’t want it to be the only thing. We felt it was important that while we can be sad, we can also choose joyful things in the midst of grief.

Maybe infusing the normal into their days was just me trying to hold it together for my own grief, because I was barely hanging on when I would have a moment to myself.

I feel like I was living in two worlds. One that has been standing still with Tom and the other that has been moving around us. It seemed weird and callous to keep doing normal things as he was getting worse. I felt pulled in so many different directions with work, the kids, and taking care of Tom. And I feel guilty choosing any of them over others. It is like none of them seemed like the right choice when I chose it. Where to spend my time may seem obvious-Tom right? But anxiety and stress is a fickle thing, and can often make us not think in reality. So anytime I was spending time with Tom, I felt like I was disappointing someone else. And even if you saw me out, my mind was racing to try to act normal to meet expectations in every situation to deflect all the emotions off. My mind was not able to be present in any situation, and I felt fatigued with the heaviness and decisions of where my time needs to go.

Being a care taker of a loved one is a lot. Over the past few months, I had become an in-home nurse for Tom. I would do it over and over again in a heartbeat, but that doesn’t mean there isn’t a toll on you. You are constantly putting someone else’s needs over your own. And everyone says, “You need to make time for yourself.” But that is not super easy to do in this situation. He has needed a lot of physical attention, and you can’t always put that on the back burner because you need some “me time.”

The role of a caretaker is often described in glowing terms—selfless, compassionate, and unwavering strength. Yet, beneath the surface of these “noble” attributes lies a gravity that can be overwhelming. I have been angry, impatient, and at moments unkind because the stress took over my body. It is a lot of coordinating from the medication, helping manage symptoms and comfort options for Tom but also paying attention to the kids’ needs and house responsibilities. I had to literally carry my 39 year old husband to go to the bathroom. And it’s not just about the logistics; it’s about holding space for the emotional and psychological needs of everyone in the house as well. I was trying to remain as calm as possible on the outside for Tom and the kids. They already had enough to focus on, and I didn’t need them to worry about me. There have been many compromises, and while ultimately they were choices I made, they felt like we lost things that are normal for a reason that was out of our control. With any move, I have had moments of not feeling like I am doing enough in any space that I am in.

I felt anything but strong and selfless. I didn’t ask to do this, but here we are. That doesn’t make me special, it is just the life that were dealt with. Each day, I was confronting the fragility of life and the reality of an impending loss. This constant reminder of mortality can lead to a spectrum of emotions—and I have felt like I was on a tilt a whirl all the time. I would wake up in the middle of the night to check to make sure he is breathing, and I knew I was watching him die. There’s a unique kind of sorrow in watching someone you love decline, knowing that there is little you can do to change their fate. Despite that, the care can easily become all-consuming as you try to anticipate the needs that could impact quality of life.

There were also moments where I wasn’t in control of my own emotions. I would just suddenly start crying thinking about who was going to take care of all the things Tom does for us. I had intrusive thoughts hit me all the time on how life would look like without him. My anxiety took over me as I would spiral thinking about our basement flooding or how I could enjoy 4th of July without Tom. Would I ever be able to look at fireworks without crying? My brain went into overdrive with all these silly scenarios of how I would be able to do house projects on my own. We have never had to hire someone to fix things at the house, so what does that even look like? And I would spiral with each what then scenario. Since May, there was not an hour that passed that I didn’t think about Tom dying and what that would mean for us left behind. He has always done the house things and can fix anything, and thinking about the responsibility of those things left me grossly unprepared, and then I would be upset with myself wasting time worrying about this frivolous stuff. I started documenting on a notes page or videoing Tom giving me instructions on different house things so I could have them as reference.

I found myself crying in the bathroom all the time. It has been very dark in my head to try to manage all the pieces. The world that once felt familiar and secure now seemed disorienting and surreal. The routines, plans, and shared dreams are suddenly overshadowed by an overwhelming sense of loss. As you navigate through the days, it can feel as though everything is in flux while you’re standing still, struggling to catch your breath. I found it hard to juggle all the things myself, because I felt two very contrasting feelings. One, I didn’t want to be a burden to anyone. That is deeply rooted in my soul from my childhood so it is hard to shake. And two, I felt guilt that I was not “enough” to handle all of it. It was a sick disoriented view that I was a failure if I couldn’t just pick myself up and fix everything. It has been very humbling to hit points where I knew asking for help was the only way to dig out of this pit. (And spoiler alert, people showed up and showed out to help…)

Then there is the feeling of realizing you have lost your partner in the big stuff too. Tom’s memory was starting to be affected by all of his symptoms, and there were weeks were he could not help me make decisions or be a voice of reason as I was processing things. A lot of change was going on around me, and I just felt so alone. I didn’t want to burden him with my worry or he just was in so much pain that we couldn’t focus on anything else. We have been together for 17 years, and it was like all of a sudden the person that I lean on the most wasn’t able to show up in the same way. I had moments of being paralyzed by all the decisions I had to now make on my own. The guilt was overwhelming thinking I was making the wrong decisions all the time. I found myself just stuck looking around waiting for someone else to make the call.

I am sharing this for a few reasons. One I think that we are able to connect on a deeper level when we are able to be vulnerable. This has been heavy and weary, so getting it out, I hope not only releases something for myself, but also highlights that people are often going through more than we can ever realize. I am not sharing this to get pity or accolades at how strong I am. When you are put in this situation you feel anything but strong; you do it because what choice do you have? My “strength” has only come because of prayer and faith that there is purpose in God’s plan. I have been processing a lot of this in therapy, and I have been working a lot on trying to share my story more and bringing others in for help. There are always layers behind people. Coming back to this writing space that I have built over the years, is a way for me to shed some of the weight of all of this. I have been fighting the duality of wanting everyone to know what we are going through to temper expectations and provide grace, but also wanting to keep everything close. There was fear that I would that I would break down in inappropriate situations if I talked about it, and I wouldn’t be able to real it back in. I was like a wound up jack in the box trying to keep my lid closed and sweet music playing. I wasn’t sure how people would react once it popped out of me, and the last thing I wanted was the pity looks. I didn’t need “those looks” to remind me how awful our situation was. But at the same time, I was starting to crack in different areas because I was just trying to make it to the next thing. I knew I needed help, but didn’t know how to accept it or what kind of help would actually help at the same time. It just felt like another decision I would have to make so I avoided sharing. Ultimately, I didn’t mind people knowing, but it has been weird navigating sharing this much about our life that hits deep emotionally.

These past few months have been scary, exhausting, debilitating, and soul-shaking. It has also been extremely humbling and a stark reminder about the shortness of our time here. There have been people who have reminded me of the importance of community and care. I have been overwhelmed by the generosity that folks have shown us, and I am not sure that I will ever be able to truly thank everyone who showed us love through this. Through my kids, I have been shown how sweet the simplicity of joy can be. And also that sometimes we cannot have the joy without experiencing sadness as well. I have had to come to the realization that enjoying things and creating happiness isn’t at the cost of my feelings for Tom, and that we weren’t already moving on without him. 

Now that Tom is home and on a path to better health, I am working on trying to find peace and balance in it all. Just because he is getting better doesn’t mean that I can just turn the emotions off and everything goes back to normal. I am also terrified that this new path will stop working like everything else has. This is part of us, and that will take some healing to work through. I am still going to therapy and pray constantly. Both are teaching me that accepting myself as a work in progress is not a sign of weakness, but a testament to my commitment to approach myself with patience and compassion. I thank God that we have new answers for Tom, and I know this is only part of our story. I know that joy is coming though this.