Spoonie Parenting Archives - Page 2 of 2

April 4, 2016April 3, 2016

6 Tips For Parenting With A Chronic Illness

A Spoonie is a person with a chronic, debilitating, oftentimes invisible illness. There are hundreds of conditions that fall under the Spoonie umbrella, and there are millions (if not billions) of Spoonies all over the world. (read the spoon theory to understand why we call ourselves spoonies).

Whether you’ve been a Spoonie since before you had kids or you’ve recently found yourself trying to explain to them why you can’t do all of the things you used to, things have probably come up that aren’t covered in the regular parenting blogs. If they haven’t yet, they probably will! Here’s a few random tips that might be useful on your own journey parenting without spoons.

Tip 1: Indoor Sports.

I’ve been lucky, either my kids just aren’t the active, athletic, into sports kind of kids or they’ve learned to adapt because me being a Spoonie is all they’ve ever known, but either way the end result is I haven’t yet had to utilize my list of indoor sports in my area. Martial arts, gymnastics, basketball, hockey (I’m in Texas, if you want frozen water it has to be inside), fencing, indoor soccer, there are any number of available options. A lot of Spoonies, myself included, have sensitivities to heat and sun, and outdoor sports mean day- and often weekend-long tournaments where you’re schlepping equipment from field to field for hours on end. With indoor sports, you’re most likely air conditioned and any schlepping will be minimal.

Tip 2: Scope out the parks.

Don’t be afraid to use google maps to scan the parks in your area to find the ones that best meet your particular needs. The sky views will show you where the parking is and if there are any handicap spaces, and you may also be able to estimate how much walking you’ll have to do. I like to try to scope out where the bathrooms are in relation to the playground so that I’m not caught off guard. I also look for plenty of shaded areas near where my kids will play so that I can sit and watch them.

Tip 3: Be honest with your kids.

Don’t cover for your illness/disability. I think one of the best decisions I made as a Spoonie parent was choosing age-appropriate honesty when it comes to my health issues. In our situation, it works. I never go into gory details about things or tell them what they shouldn’t hear, but if they ask me why we can’t do something right this minute, I’d rather they know it’s because Mommy doesn’t feel good than have them think it’s because Mommy doesn’t want to.

Tip 4: Stop comparing yourself to other parents!

Period, end of story, just don’t do it. Read the parenting blogs all you want (especially mine, please and thank you), but don’t for a second get caught up in The Parenting Wars that are constantly waging on the internet. It’s not worth the spoons. I can guarantee you that whatever blog you’re reading (yes, even mine) doesn’t come anywhere even close to showing you what really goes on in their day-to-day life. I tend to get a little more gory in the details than most, but if I was completely honest with everyone you’d all run away screaming and have nightmares. Everything isn’t all sunshine and roses, I just like to focus on the positive and funny stuff because that’s the type of energy I like to send out. Anyway, my point is that we as Spoonie parents are in a whole different league, let alone ball game, so don’t let yourself feel inadequate based on someone else’s standards. You tackle more every day than most “normie” parents ever do and you’re amazing at it and don’t you ever forget it!

Tip 5: You’re allowed to make yourself a priority.

No really, you are! Parents (mothers especially) are constantly pressured to put everything before themselves. Kids, spouse, job, home, friends, there’s this pressure from outside influences (remember those Parenting Wars you’re forbidden from fighting?) to give and give and give of yourself. But, you cannot pour from an empty cup! The same thing goes for spoons! Make sure you are taking the time to take care of yourself. Do what you need for you to stay as healthy and active as possible.

Tip 6: It’s okay to ask for help.

It takes a village to raise a child and the children of Spoonies especially so! I know not everyone has family close at hand, but it is very important to create for yourself a network of trusted friends and advisers who can and will help you when you need it most. Make sure to nurture the relationship because it goes both ways, and don’t take advantage of someone’s generosity with their time and effort.

Now I know this doesn’t even come close to scratching the tip of the iceberg when it comes to the challenges of Spoonie parenting, but I hope there’s something worthwhile. If you’ve got a question or a parenting tip to share, feel free to comment below or send me a message and I can post it for you anonymously! Much love and hugs and spoons to all!

March 13, 2016February 20, 2019

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.

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.

this article is written by Natalie. Read her story here.

March 3, 2016February 20, 2019

“Mommy why don’t you get better?”

Having a chronic illness and having small children together is an extremely hard combination. Children do not understand why you need to sleep so much. They do not understand that the noises they make give you sensory overload. They do not understand why their mommy is always ill.

Explaining chronic illness to a 5-year old

My 5-year old daughter asked me the other day: “Mommy, why don’t you get better? You are ill, then you are better for a little while and then you are ill again!”

Well, what do you say to that? I choose to be honest and tell her that I don’t know why I am ill all the time. That it is normal to get ill and after a couple of days get better again. But in my case I am always ill. I always need a lot of sleep. I will never fully get better.

That was hard for me to say out oud, but my daughter took it very well. How else can she take it? She does not know any better than seeing me sleep during the day, ever since she was born.

Running the Mommy marathon

Having a chronic illness and being a parent at the same time is like running a marathon non stop. Your body tells you that you need rest, but your child tells you (cries or screams at you) that it needs tending to. “Mommy, I am thirsty”, “ Mommy, I am hungry”, “Mommy, I need to pee”, “Mommy, I want to play with you”

Being a normal healthy parent is exhausting and difficult enough. Now image hurting, having trouble sleeping, getting sensory overload from every little thing, not being able to wake up properly and a whole bunch of other stuff at the same time.

Spoonie parenting rollercoaster

How do I do it? I don’t know!

Some days are very hard and don’t seem to end. Some days are lovely and I enjoy immensely. Like the chronic illness itself there are good days and bad days. Parenting as a spoonie is the same. On some days my daughter takes all my spoons and just makes me want to cry. On other days she fills my spoon supply by being so lovely and helping me out. It is a spoonie parenting rollercoaster. I would not change it for anything in the world!

How do you experience being a spoonie parent? Leave a comment and let us know!