It’s hard parenting with a chronic illness. Watching my two beautiful girls and knowing that I cannot give them all the time and attention that I would like to.
Having a chronic illness means that my abilities are limited. Sometimes in the morning, I can barely wake up. I struggle to change them and feed them. Then I just lie on the floor, making sure they don’t hurt themselves, and wait, pray, beg for nap time.
What Is A Chronic Illness?
That also means that there will be bad days and good days. The good days can make me feel like life is so great and for a short period I forget that I even have an illness. I will plan and dream of all the things I’ll be able to do. That feeling usually goes away as soon as a symptom reminds me that I am limited.
What Does it Mean Being A Parent With A Chronic Illness?
What does that mean when you are a parent, of twins at that? It means that I need a lot of help. It means chores won’t ever be done in one day. Dinner is frozen most of the time.
It means the kids will understand things differently than other kids and will probably take on responsibility earlier than most.
Get A Support System
I always stress the importance of having a support system as a parent of twins. It is even more important as a parent with a chronic illness.
Your support system needs to be able to be there when you need them. It may mean they help out with chores, take care of the babies, bring dinner, or take over so that you can rest.
Your support system and significant other need to understand that the chores will only be done minimally. That might mean bottles are washed and the pamper pail was emptied but nothing else is done.
They need to understand that the energy to cook after a long day of working and/or taking care of the kids is most likely non-existent. Dinner might be takeout, leftovers, or something from the freezer
Taking Care of Kids Is Hard
Parenting with a chronic illness means your babysitting days are long gone. I barely have the time and energy to take care of my own kids.
It also means rethinking having more kids. The infant days are the hardest. Those days require 24 hour attention.
It’s like being on call, and that can feel excruciating when you’re dealing with symptoms. It can also be a trigger for symptoms. This is a sad thought for someone who was hoping for another set of twins, boys this time.
Parenting with a chronic illness means giving up the idea of how life should go. Life needs to be real flexible. It doesn’t mean that you can’t make plans, it just means you need to plan for your illness.
For instance, If we plan to go to an amusement park for the day, I need to be in tune with my body and aware of my triggers. Then plan on what to do next if I start losing energy. I also need to know that the people I go with are understanding if they need to go on without me for a while or if I need to call it a day.
More Responsibilty For The Kids
Parenting with a chronic illness means that the kids will probably start learning responsibility earlier than most. You will be needing and requesting them to help out in whatever way is within their capabilities.
That might mean just being able to take care of themselves and eating simple meals. It could also mean helping with tasks that have to be done.
It means teaching them to understand that you are limited on your abilities some days and how that might affect their lives.
You might miss soccer games or dance recitals. You might not be able to make cupcakes for the bake sale or go to that parent meeting.
Taking Care Of Your Needs
Being a parent, it is easy to lose track of yourself while taking care of the kids. You have to feed them and change them, bathe them and play with them, teach them and spend time with them, and nap with them. It is like every second of your day is planned and none of it has to do with yourself.
It is important for all parents to make time in their day to take care of themselves, especially those with a chronic illness.
For me that means, slowing down in the morning while we are walking out the door. The girls will be screaming because they know it is time to go but I need to take a minute to make sure I packed everything to take care of myself for the day: breakfast, water, lunch, protein shake, vitamins, and medicine. If I forget something then I lose my balance and I am not a full capacity for them.
Now I give you some helpful tips to maximize your time and energy and to live in spite of your illness.
- Get A Support System– I know I say this in almost every post but it is that important. You will need people who are on your side, who understand, and who can help in your time of need. It might be just to talk, or it could be to babysit, or help with chores.
- Know Your Limits– Know what your triggers are and when you might be pushing yourself too far. Knowing this can prevent you from losing all your energy, crashing, or relapsing.
- Be Flexible-You may not be able to make promises and plans like you used to but that doesn’t mean that you can’t make any at all. Make sure you leave room in there for flexibility. Take your kids pumpkin picking but make sure you don’t walk too much or that you stop for rests if exertion is a trigger.
- Focus On What You Can Do– The easiest way to start a pity party is focusing on all that your missing out on. You don’t want that, it’s depressing. Focus on ALL the things you can do. The summer sun may trigger your MS symptoms but a fun game night in the air conditioner is fun. So is a cookout in the evening when it gets a little cooler. I used to love night swimming with my cousins when we were younger.
- Take Care Of Your Needs– Kids are dependent upon you, especially smaller ones, we know this. That doesn’t mean you are non-existent though. When you gave birth you took on a new title but you didn’t get rid of all the other ones. Before you were a parent you may have liked to window-shop at the mall, sew some fun things you may never be able to use, or Netflix and chill with a rom-com. You should still do those things. You get to fulfill yourself which makes you feel good and your kids see the importance of taking care of oneself. When you feel good, it makes it so much easier to be joyful around the kids.
Please let us know if you have any other tips you want to share with other parents. Or tell me your story and how you do it, especially if you have twins!
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