Spoonie parenting: the burden of guilt

As a parent you want the best for your children. Especially as a mum you try to do it all.

parenting guilt

You cook, you clean, you play with your child, you take them to out of school activities, you help with homework, you have fun days out – all while also being a great spouse, daughter, friend and much more. Even healthy moms get overwhelmed with all of that (on top of the lack of sleep a young one brings with it).

Now imagine only being able to do 1 or 2 things per day before your energy runs out…

It is humanly impossible to get everything done that way.

Parenting as a spoonie (parenting with an invisible illness) has all the normal challenges all parents face, but also some extra’s. For example the tremendous amount of guilt.


“Your daughter is so mature for her age!”

People always compliment me that my daughter is so good at taking care of herself at 5-years old. They have actually been telling me this since she was 2. I will tell you the secret behind that accomplishment and why I am not proud of it.

When my daughter calls out for me early in the morning (5am used to be her normal time to wake up) I am physically not able to get out of bed. My limbs are numb. I can not move. I hear my child calling but can do nothing about it except yell back: “Do it yourself!”

During the day I would teach her how to get up and pee by herself from age 2. I taught her to get a blanket and sit on the couch with her tablet, until it is time for me to wake up.

This was not because of laziness or because I just want to sleep longer. It was an absolute necessity, some days I was just not able to get up at all.


Helping mommy – age 3 and up

From age 3 she was able to get her own juice boxes and rice cracker snacks. This was set up this way so she did not have to wake me during my middle of the day naps. These naps could not be skipped otherwise I was not well enough to make it to the end of the day.

She quickly learned that waking mommy was only allowed in emergencies. If she really needed help with something. And not for “look what I can do!” or “Do you like my drawing?”

For age 4 she started helping me, doing dishes, tidying up her room and other little things. When I had to sleep she gave me a blanket and a kiss and closed the bedroom door. She went to play by herself for an hour or two until I woke up again.

This doesn’t mean she is self sufficient all the time. I do get the “Mommy I need you” calls at least 20 times a day. But she knows when she is able to do it and when she really needs to let me rest.


The burden of guilt

I wish I was a better mother. I wish I could’ve looked at all her tricks and drawings. Instead I was sleeping her life away. I was sleeping because otherwise I can not enjoy the moments that I am awake. I was sleeping to make the best of the time we have when I am awake and okay.

My girl is 5 years old now. She can play by herself for hours. She gets her own drinks and snacks. She gets dressed by herself. She let’s me sleep in the early mornings and during the day.

She is starting to realize that not all mommy’s sleep all day. She is starting to realize that it is not normal to always be ill. She is starting to ask questions. (read more in the article: Mommy, why don’t you get better?”)


I am doing the best I can

I need to remind myself that I am doing the best I can. I am trying to get as healthy as possible and not go over my limits to be able to be there for her. I have to try and not think about the tremendous guilt I have inside of me about not being able to give my baby more. I am giving her all I have got.

Luckily I also have good days where we play, go out and have fun. She can have friends over most days because that does not take as much energy. She loves it!

Unfortunately I only became very ill while being pregnant and had no idea it would be like this. I was undiagnosed for far to long. I am working on my health as much as I can to get better health and more energy. I do as much as I can.

At least with these early lessons she will grow up to be a loving, understanding and independent adult.



spoonie story nataliethis article is written by Natalie. Read her story here.

3 Replies to “Spoonie parenting: the burden of guilt”

  1. Boy, this made me cry. I’ve been a Spoonie since I was 15. I’m 32 now and at the crossroads. I got married when I was 26 but we never had our own kids. He already had two little girls, ages 3 and 4 then, and I helped parent them for 5 years. Our joint custody was every other week. My husband had to work a lot so I was the main caregiver. During the school year it wasn’t so bad. I got up every morning to get the girls ready, put them on the bus and slept until they came home. And I could rest every other week. Summers were difficult but we managed. Then I got divorced two years ago. I still see the girls about once a month but I can’t exactly parent them now. I met a great new man and we are getting married next month. We really want to have at least one child together. I am currently tapering off my medications so we can start trying after the wedding. I have so many fears. Can I even get pregnant? What if I’m completely miserable and unable to function without meds? If I have a baby, what if I’m too sick to care for it? I suppose I tell myself I can’t live in fear. And I cannot let this stupid illness run my life and ruin my lifelong dream of being a mother. I have a lot of support and a lot of faith. But I will also have a lot of guilt.

    1. My husband whom I’ve known since I was 17, I’m turning 40 next week, says he did not sign up for this…meaning my “disability”. I became seriously ill after my second child was born. He’s now 9. I have Sjogrens, Lupus etc etc. My husband has fought me tooth and nail in the yrs since my diagnosis. Unfortunately, I’ve become sicker over the years and have lost almost all my independence. Sometimes I’m convinced that the stress is making me so sick and if I was in a more supportive relationship I’d be more able to get well. He is emotionally abusive yet he does things for me like get my meds or do the shopping or go to the Dr’s with me. He keeps saying he loves me. Next week is my 40th birthday. He’s booked a holiday for him and our boys and told me if I can’t come he doesn’t care because I hold the whole family back and as usual he’s sick of it. I’m too ill to go. I’ve lost all faith in myself, my life and my worth after fighting for 9yrs to keep strong and staying positive and focused. I’m surprised by the fact that despite everything I’m trying to stop a divorce. I have no close friends or relatives. Today I’m considering ending it all. But I’m too scared. How on earth did you have the strength to go through a divorce? At the moment I’m really ill.

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