Take Heart

5 Things I Wish Others Knew About Me As A Caregiver

• Sara Clime • Season 4 • Episode 159

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Summary: Sara opens up about the challenges of feeling misunderstood as a mom and caregiver to a son with disabilities. Her top 5 instances when she has felt misunderstood touch on assumptions about strength, the perpetual feeling of needing to do more, finding a balance between identity and the constant impact of the diagnosis, and more. We know you’ll feel seen by listening to Sara’s honesty. So, grab a cup of coffee and prepare to dive into the heartfelt truth in this episode. 


Key Moments:
[1:54] “You’re so strong!” and “I couldn’t do what you are doing!”
[7:02] Believing in God but having fear
[8:05] We can be busy, never alone but not fulfilled
[10:22] Life outside of our child’s diagnosis

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Ep. 159: 5 Things I Wish Others Knew About Me As A Caregiver

Earthly fears can be pervasive, no matter your belief system. I fear losing my son too soon. I fear what it would mean for my son if he lost my husband and me too soon. I fear making the wrong choice in medical care, clinical trials, education, transitions, whatever. Welcome to Take Heart, a podcast about creating space for connection, hope, and joy as a mom to a child with disabilities or special needs. We want you to feel connected and encouraged as we navigate this messy, emotional, joyful life together.

Hi, I'm Sara Clime. You're listening to episode 159. We are talking about being misunderstood, what others don't understand about our lives and our children's lives. As a mom to a son with disabilities, I often feel misunderstood more than I feel understood. So, this topic is difficult for me to talk about honestly. When I started writing this episode, I felt like I was going on a rant. I was venting and being negative. 

So that's what I let myself do. I typed furiously and would need to walk away from it and return to it later. After typing unfiltered, stepping away from it, and returning to it several times, I started to worry that I was being too negative or not giving others enough credit. But then I stopped and asked myself if what I was writing about, what I wanted to share with you today, was negative because I'm a negative person, or does it feel negative because it's a hard truth? After some reflection, I realized that it's a hard truth. It stinks sometimes. I often feel misunderstood, but over the past 11-plus years, I have realized that, more often than not, feeling misunderstood does not mean others don't want to understand me. I have amazing people in my life who want to know and understand my family and myself. With that in mind, here are the top five times I feel the most misunderstood. 

Number one
Assuming we are strong and or inspirations. I get where people are coming from when they say things like, I just couldn't do what you do. You're so strong, or you're such an inspiration. I truly get it and appreciate the meaning behind it. So, if you've ever said that to somebody, don't beat yourself up. Cause I get it. And I'm sure that they do, too. However, I don't think others understand how those sentences can be taken. When I hear, "I just couldn't do what you do," I hear, "I couldn't or wouldn't want to raise your child or someone with their disabilities." I immediately want to know why. Why couldn't they love my child? Why do you assume my life sucks? Because it doesn't. I have a wonderful life full of blessings, love, and laughs. My son is not a broken person. He has disabilities. Period. He's not less than anyone else. Again, I know where people are coming from. They're overwhelmed with the thought that this could happen to anyone, especially themselves.

This, meaning my son's diagnosis, could happen to them. It's too much for them to handle in the abstract, so they say things like, "I just couldn't do it," as a way to, I don't know, put it out there to God that they couldn't handle it or something. Maybe saying they couldn't do it makes them feel safer. I don't know why people say it. I just know it's hard to hear. It makes me feel less seen, heard, and loved than before they spoke those words of encouragement. Along those lines, hearing, "I just don't know how you do it," that has the same effect. It makes me feel like others feel my son, my family, my life, myself is a burden or a hardship. Loving my family, loving TJ, loving myself isn't a hardship. It can be hard, it can be a hard life, but my life and their lives are not a hardship. TJ's not less than. We are not less than anyone else.

When I hear, "You're so strong," I hear, "Sara, don't show how tired, lonely, isolated, hurt, jealous, fearful, sick, or weak you feel. Y'all, I don't always feel strong. There are days I feel like staying under the covers, sleeping and crying. And the only time I would want to come up for air is if somebody was going to pass me a glass of wine or some ice cream. Then there are days when I feel like I need a Wonder Woman crown. I am ready to take on anything that stands in my way. 

But here's the thing with being strong. Ask caregivers. We don't usually have a choice. Actually, we don't have a choice. We have to be strong. Strong as in we have to keep going. There's no other choice for us short of walking away, and that will never happen. It's like when someone says, we're an inspiration. Why? Because we care for our children because we're willing to fight and go to the map whenever necessary. Because we want not only what is best for our child with disabilities, but our other children, our spouse, our families.

Why are we an inspiration? Because we demand that our children get what they deserve out of life? Because we will fight for equality, equity, and inclusion? Granted, we have to fight for what's best for our children and for what they deserve. But being an inspiration is like being strong. Occasionally, we need to be able to turn our strength and inspirational switches off so that we can rest. I often feel misunderstood when I get those statements of strength or inspiration or living a life no one could imagine living.

It makes me want to retreat. I mean, who wants to feel that misunderstood all the time? Plus, this is my life. This is my son's life. This is my family's life forever. No one can be an inspiration forever. No one can be strong always and forever. So, if you weren't a caregiver, you might be thinking, jeesh, what can someone say then? Well, perhaps you say something like, "You're doing a great job. What can I do to help you?" or sometimes, silence, your quiet strength, simply standing behind us, is the best thing you don't say. 

Number two
The second misunderstanding I feel the most is the feeling like we, as caregivers, can always be doing more. We can always fight for more inclusion, advocacy, disability rights, and support. Be it education, state, federal, church, public spaces, accessibility, the list goes on, but not only do we feel that we are never doing enough as caregivers, but we still have the mom guilt on top of it. Not to mention, we are utterly exhausted. You know, at this point, you can go ahead and reference my episode on 154 about what I wish I would have known when I was younger. It explains a lot of this. But we have two roles in our lives for our children. And knowing when enough is enough can sometimes be next to impossible. Add on our parenting role to our other neurotypical children, and the feeling of needing to be doing more, it's consistent and it's chronic. 

Number three
The fear is prevalent, constant, and sometimes all-encompassing. I believe in God, and I believe in his promises of eternal life. With that said, earthly fears can be pervasive no matter your belief system. I fear losing my son too soon.

I fear what it would mean for my son if he lost my husband and me too soon. I fear making the wrong choice in medical care, clinical trials, education, transitions, whatever. I could worry about the future every day if I allowed myself to go there. And those days when I'm feeling a bit off or sad? Well, on those days, I need to remind myself not to worry or fear the future more often. I'm not constantly worrying. I find great comfort in God and in scripture.

More times than not, though, if I'm not actively worrying, it's because I need to get things done, or I've reminded myself umpteen times just today that worrying will not change anything. Fear and worry are a constant struggle. We're human. Just because you may see us as caregivers seemingly not worrying doesn't mean that the worry or fear isn't present. Chances are we've packed that worry, and that fear tight in a locked box, and we stowed it away somewhere in the back of our mental and emotional closets.

We just don't have enough time or energy to access it, but that doesn't mean they don't try to surface only for us to forcefully shove them back in that closet, telling them, I don't have time for you right now. But fear doesn't stay locked up for long. Fear and worry always resurface. It's usually at two o'clock in the morning or in the middle of church when your guard is down. I don't know; maybe that's just me. I digress. 

Number four
Just because we are busy and never alone doesn't mean we are fulfilled. Caregivers are often lonely and socially isolated. There is always something to do. 

Remember the enough is never enough misunderstanding from earlier? These go hand in hand. More often than not, our to-dos aren't things that can wait for another time. There are often too many hurdles when it comes to being socially active. Staying home and caring for our children and their needs is necessary. Many of us have given up careers to stay home, so there isn't disposable income to go out. Nor do we have anyone to provide us with that respite so we can leave the house. Some of us are single parents and don't have that other person to lean on so we can get away with a friend. All of our resources, time, energy, money, you name it, it goes into being a caregiver and sometimes just keeping your child alive. Some of us just want to be able to sleep. So going out, well, that's a low priority, even if that is for a couple of hours to exercise or attend Bible study. Yes, I admit all of these are choices we make as caregivers. But sometimes, is it really a choice? Often, these don't seem like choices at all. If we don't do what is necessary to care for our children, even to the detriment of our social lives, our children, they'll suffer. Our families suffer. We will suffer.

Sometimes, social isolation isn't a choice at all. It's simply the lesser of two evils at any given moment. 

Number five
This is the misunderstanding I experienced the most, which is there is life outside of the diagnosis and outside of being a caregiver. Due to my son's diagnosis, his body is constantly deteriorating. His care changes often. When TJ was diagnosed, we felt thrown in the deep end of a pool without floaties, a life jacket, or swimming lessons.

I mean, we went into a therapy session thinking he wasn't walking up the stairs correctly. And then, less than 24 hours, we were facing a debilitating progressive and terminal diagnosis for our then almost eight-year-old. And with every significant change in TJ's body and, therefore, his subsequent care, we feel like we get tossed back into that deep end time and time again. Sometimes it doesn't even feel like we've even come up for air before life shoves us back under that water and dunks us under the water again.

I often tell friends I need this to be a Duchenne-free zone. I need it to be a diagnosis-free time. I need to be Sarah, just Sarah, not TJ or Connor's mom, not Craig's wife, not TJ's caregiver, not Advocate Sarah. But you know what? That's not truly possible. What I just need at times is to not talk or explain where we stand with the latest therapy, clinical trial, the latest fight for benefits, or appointments with his medical team. Oh, granted, who I am as a caregiver has deeply impacted who I am as a woman. And I truly appreciate everyone caring and loving for our son and us as a family. However, just because others are curious or interested in TJ's prognosis and his current status doesn't mean I'm at a place where I can talk about it, and I just need a moment to catch my breath. 

And if my son's not with me, I feel the need to just be me even more. Sometimes, I just want to go for a walk, grab a cup of coffee with a friend, or just go to the store and buy a gallon of milk. Most of our lives often revolve around our children's diagnoses. I think we can all agree on that. But that doesn't mean we don't want more out of life for our children, our families, and more out of life for ourselves. Sometimes, it's okay to set the diagnosis aside, even if that's mentally, for a moment. 

When we say that our child is like anyone else, we mean it. They are more than the diagnosis, just as we are more than being a caregiver or someone with that diagnosis. 

Thank you so much for listening to this week's episode. Being a caregiver is complex and can be even more difficult when we feel consistently misunderstood. 

What do others misunderstand about you, your child, or your family?

Email or jump on our social media page and let us know. You can find us on Instagram and Facebook @takeheartspecialmoms. You can email us or leave us a comment on our website at www.takeheartspecialmoms.com. And if you haven't had a chance to check out our book, "The Other Side is Special," we talk about navigating some messy emotions that accompany being misunderstood. You can find it at your favorite online retailers. You can find links to those retailers at www.takeheartspecialmoms.com/books.