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5 Lessons I've Learned From Parenting With a Chronic Illness

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Living with a chronic illness can often feel like trying to navigate one of those large corn mazes. You feel that things are going well until you hit a dead end. Then you start to re-evaluate where you stand in life and every decision that has lead you to that point.

Living with a chronic illness and parenting young children can feel like you are navigating the maze with a blindfold on, someone strapped to your legs, someone asking you the same question repeatedly, and you just touched something sticky where sticky shouldn’t be. Over the past four years of my own journey with a brain injury, I have learned these five lessons.

1. Have a support system.

My family would not have survived the first two months after my injury without my mother and mother-in-law taking turns being at my house 24/7. They did all the meals, took care of my kids, and did all the housekeeping. Even now I still couldn’t survive without them. They both still help with driving kids to and from school, and they watch them on days when I’m not doing so well.

Having a support system is crucial and it doesn’t have to be family. There are many avenues for support, including friends or possibly your local religious group. Let your friends know what you are going through.

Name some specific difficulties you may be having. They may offer to bake a meal or take the kids for an afternoon. Admittedly, I did not take advantage of this.

There’s also local support groups as well that may work for you later in your injury journey. It’s wonderful to have a group of people who understand exactly what you are feeling, either symptom-wise or emotionally. I highly recommend connecting with a group whether it is online or in person.

2. Have a retreat plan.

You are going to need a plan for retreat. There are going to be times when you absolutely need a brain break, need to lie down or whatever for 20-30 minutes. Times when you feel like you might splinter into a million pieces.

It is vital to keep a written copy of your toolkit. This is a list of your tried and true methods to bring relief. I say to have it written down because when you are amid a brain breakdown, it’s hard to use your brain to even remember what works for you. Examples of what’s inside my toolkit include: a heating pad, ice packs, Sea-Bands, essential oils, meditation, deep breathing, slow walking, ear plugs, and getting some fresh air.

This is where I use technology to my advantage. Most of the time I will put on a movie for them. Despite their age differences I can usually pick a movie that will keep them all engaged. If not, I split them up with one to two kids downstairs and one to two kids upstairs for separate movie times. Then I can lie down in my quiet bedroom or use strategies from my toolkit that work for me to relax and regroup.

Having a plan in place will help tremendously because you won’t be wasting any precious energy trying to think of a plan.

3. Letting go of perfection.

I believe Elsa said it best, belting out that song that is forever imprinted on parents’ brains, “Let It Go!” As parents we may be always self-judging how we are doing as parents with what we are feeding our kids or how clean our house is.

It’s in these moments that we need to give ourselves grace. One of my biggest challenges was accepting that I was going to have down days. Instead of trying to fight it and swim upstream, which usually made it worse, I learned to let myself rest and regroup. I let myself give the kids cereal or fruit and yogurt for dinner. I know that letting go of the need to cook a full meal was helping me in that day to heal and most likely I would be back at it tomorrow. The world wasn’t going to end if today I sat on the couch with eyes closed and I didn’t get to cleaning the bathrooms or folding the laundry. That could all wait until the next day or later.

My life changed when I finally learned and started to follow this simple strategy. I was able to let go of the parental guilt or the “I should be” and truly let myself heal and rest when I needed to. Once you are able to embrace this you can feel yourself begin to relax and reduce stress.

4. Know your limits and stick to them.

Knowing your limits is directly related to the last lesson of letting go. We all at some point wish for our former self or want to be back to our “normal.” Being aware that I will not get back to Kelly 1.0 but being able to make Kelly 2.0 be the best version is something that I can work on. I know that I can’t get up early with the kids, make breakfasts, put in laundry, work, go to school functions, and meet up with friends. So why do I try and then get upset and frustrated when I put myself in a hole trying? Being able to say no, to others and yourself, is a skill to be learned.

I know that getting up in the morning is the worst time for me. My kids bursting with energy and the chaos of the morning is too much for my sensitive brain to handle. What I am able to do is to help my oldest son before the younger two get up. With the lights dimmed and the relative quiet of the downstairs I can assist in the morning routine. Once the other two kids come into the picture, my husband is ready to take over and I retreat to the quiet bedroom for about 30 minutes. Knowing that how I address the morning sets up how I will respond to the rest of the day helps me to set my limits and stick to them.

5. Enjoy your loves.

Last, but not least, is to enjoy your family. My injury happened when my kids were ages 5, 2, and 9 months old. So much of those first couple of years I spent shushing them or spending limited time with them. But it’s so true what they say, time goes by fast, they are only little once. Now I cherish every moment with them. By using the first four lessons I am able to be a bigger part of my family and my children’s future.

My hope is that these words have helped you in some way and that you believe you can and that you will have a fulfilling life with your children and family.

Follow this journey on Quiet Storm.

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Originally published: January 31, 2018
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