I may be biased, but I believe that motherhood is the most rewarding task any woman will ever accomplish. Becoming a Mom and looking at your children knowing they will shape the next generation is daunting and exciting. The endurance you need is unmatched when it comes to balancing their emotions, their extra-curricular activities, their goals, their friends, their growth, their health, their insatiable need for food, their comfort, their love, their learning, their skills…the list goes on forever.
There isn’t a mother in the world who doesn’t feel the pressure of doing right by their kids so they can help them succeed. The real wrench-in-the-gears that makes this all-encompassing task exponentially more difficult is attempting to be all that a mother is, while also trying to manage a chronic illness.
I’ve been a Mom for 7 years and I’ve been sick for 10. I knew having children would be difficult, I just didn’t know that it would create so much heartache along with the reward. (I also was not nearly as sick then as I am now and had no idea what the future would hold, so please be kind in any judgement.) Becoming a mother filled in all the cracks my life possessed as I searched for purpose; I didn’t know how much I needed them. There is nothing more fulfilling to me than getting to be their Mom. But there is nothing I stress or worry about more than the ways I am failing them.
Arguably, every mother feels that way at some point, but with chronic illness, that worry is a little unique. And I wish I had answers for “How to Not Screw Up Your Kids With A Copious Amount of Trauma That No One Can Ever Escape Because You Live With Several Chronic Illnesses”, but I don’t yet.
What I do have though is 8 Truths that might help you feel less alone as you too navigate motherhood and chronic illness. Tell me in comments if any of these resonate with you.
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1. Time is a thief and your body is an accomplice
When I think of parenting with a chronic illness the first thing that comes to mind is how much time I have lost with my kids due to flares. I have spent hours, days, even weeks laid up in bed without being able to hardly do anything but give them little kisses on the head and send them out because their noise and energy causes my body more pain. It really sucks, because it has robbed me from being able to have certain experiences with them; moments I can’t get back. There have been so many seasons that have passed uncelebrated and unattended because I am just trying to survive. I knew this would be the case when I had my children, I just never knew how much heartache this part of my reality would bring.
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2. Calculating risks is a necessity
I can’t be the spontaneous mom who go-go-goes all day long and makes any decision on a whim. And I know that most moms aren’t like that everyday anyways, but it’s the reality that I can’t go grocery shopping, take them to the park and drive them to school all in the same day. I wouldn’t survive. I often feel horribly guilty because I have to say “no” to their requests pretty often because I’m always weighing the risks if pushing myself today means I’m couch-bound tomorrow. There’s never a day that I don’t absolutely have to calculate the cost of the activities we choose to do so I remain on my feet from day to day.
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3. Kids can’t be kids
My babies know all too well and all too young what pain looks like, what seizures look like, what fainting episodes look like. It has an effect on their neurological system that I wish it didn’t. Whenever my husband is home, he is the caretaker so our children can just run around and be wild kids, but he isn’t around all the time. My babies have had to run to get me my oxygen concentrator or help turn me on my side enough times now that they’re almost more proficient at it than my husband is. I see the anxiety in their bodies whenever they have to help me and the guilt eats me up. Trust me, I do everything I can to hide it as much as I can, but I’m chronically ill; I can’t always get away with hiding it. I just wish they could be kids and nothing more.
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4. The constant uncertainty for the future
Our future, well, our future will be what we make it. But according to some doctors, I may not see my kids graduate, get married, or have babies. Doctors can be wrong, but the uncertainty sucks. I want to make long term plans for my family, I want to look forward to a beautiful future with endless possibilities, but how can I when I can’t even predict the next 30 days? I want to protect them and tell them I’ll be around for a long time, but then I feel like a liar. I try to focus on a day at a time because the uncertainty is consuming and a day is about all I can plan for.
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5. Developing patience with pain
Chronic, daily pain is my body. Some days it’s more bearable than others. But my kids can’t tell so they tap my skin to get my attention and hit my leg when they want to be held or even try to jump on me when I’m on the ground. Just because I’m hurting does not mean I’m not their parent. In those moments when they’re just “being a kid”, I have to do my best to remain their mom instead of the angry demon monster that wants to erupt from within me because of the sudden shooting pain. I have to choose to be patient with them and either move myself or explain why they can’t do that with me. That daily choice is difficult to repeatedly choose everyday. Make no assumptions that I do it perfectly, but in this journey I never expected the need to grow my patience with my pain for my kids.
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6. Grieving time that hasn’t even been lost
I don’t know how long I’ll be around and I’ve often wondered if I’ll be there to teach my children how to drive, or how to stand up to bullies, or even how to make a cake; any of those precious moments that make parenting a treasure. Because of this, I try to have some of those lessons in tiny ways right now….just in case. And then, when another scary flare up hits, I cry at the reality of my mortality.
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7. Self-care feels selfish
Ya’ll, I lay down a lot. And assuming only those who have a chronic illness are reading my blog, I know you do too. Doesn’t it suck that self-care feels selfish? It’s difficult to explain to others how going to get my hair done or spending time with friends feels so wrong, almost sinful. My family already doesn’t get me in all the capacities that they deserve, so how am I supposed to feel okay taking time to be ME when ME demands a lot of time in bed, too. And all that time in bed adds more things to everyone else’s plate. How am I supposed to feel comfortable getting out to take care of myself when they already sacrifice so much to take care of me? Time away means I’m spending my limited, precious energy on something else besides helping around the house. If I felt like I regularly “pulled my weight” around here, maybe I’d feel more comfortable with self-care. The truth is, I don’t.
8. The ultimate sacrifice for their well-being
Like I said earlier, I think for most women once they become a mother, they just want the best for their kids. Even with (I’d say especially with) my illnesses, I really want the best for my kids. I will give them all that I can, at the price of my body, to help them feel protected and loved. They deserve more than what I really can give, but what I can give I want to give 100%. It feeds my soul. Even if I have to crawl into bed shaking in pain, I close my eyes happy for them. I just never want them to doubt that they mean everything to me, even though my health demands everything of me.
If you can relate to any of these truths, I just want you to know that you are an incredible mother. You have to give and sacrifice in ways that mostly goes unseen. Just know that right here, your sacrifices are understood.
I know that life does not look how you planned, but still showing up every day to be what you can be for you kids will make a big difference in long run.
It’s also okay to cry, in case someone hasn’t said it. Also, you’re beautiful.
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This is beautiful. You are beautiful. Thank you for taking the time to write this out. I’ve often carried “chronic illness mom guilt” which I know is different than the ordinary “mom guilt.” I can’t do everything. And here’s the truth that no one tells us, neither can the other moms. We want the best for them, that’s why we feel the guilt. Someone recently pointed out to me that if we weren’t good parents, we wouldn’t feel that guilt or wonder how our illness effects our kids. I feel 1 through 8 of the above, and am glad to know I am not alone. You are not alone. You are teaching your kids things that kids with non chronically I’ll parents don’t learn the same way…. endless love, compassion, caring for others, selflessness. They’re learning about disability and accessibility through a different lense. And they feel your love for them. Take care.
Always so glad to find other Chronically Ill moms who know the struggle and know how deep that reaches. Thank you for the kind words you spoke – our unique lived experience is going to make for some very aware and compassionate kiddos. 💓