Caring for a child with the common cold or flu is one thing. But imagine being the parent of a chronically ill kid.
No parent wants to hear “Your child has been diagnosed (insert chronic, potentially life-threatening illness here).
I heard stories and seen videos of parents who have a rush of adrenaline and perform amazing rescues when their child is in an emergency situation. But what if every day is a potential emergency situation?
When your child has ongoing needs, your related needs are ongoing as well.
I wasn’t diagnosed with my chronic illness until I was in my twenties. But there are many folks like Tasha who’ve lived with chronic illness their entire lives.
Many people don’t realize that chronic illness takes a toll on the entire family.
How a Chronically Ill Child affects the Family
When a member of the family is diagnosed with a chronic illness, the family dynamic is impacted. Family members’ roles, responsibilities, and boundaries change.
Everyone in the family from the person with the illness to the parents to the siblings have to make adjustments from traditional family norms.
Having a child with a chronic illness affects the parents in unique ways. There are some studies that suggest having a chronically ill child has a negative impact on the parental dynamics resulting in high conflict and divorce rates.
One parent may become obsessed with caring for the chronically ill child while the other may not want to deal at all. Siblings may feel as though they are ignored.
Balancing the medical needs of one against the wants and needs of others in the household is a constant struggle.
The future is uncertain and unpredictable. It triggers a ton of emotions for everyone involved.
11 Tips for Parents of Chronically Ill Kids
1. Advocate for Your Chronically Ill Child
On top of being a parent, you now have to take on this role of advocate. You want the best for your child in every way – that includes medical treatment. Kids can’t articulate so you will have to do it for them until they can.
2. Be Flexible
When you’re making plans and daily routines flexibility is needed. You can’t predict when a flare-up or crisis may strike.
3. Let Your Chronically Ill Kid be a Regular Kid
Yes they are a chronically ill child but they are a child none the less. On the days when they feel up to it, let your kids play. There will be days when they aren’t able to. But they still deserve a childhood.
4. Ask Questions if Your Don’t Undestand
The medical field is complex and scary. The doctors are there working for you. Don’t feel like you’re stupid or being a pester. If you don’t understand, ask questions.
5. Document Everything
Write it all down. Every symptom, appointment, test result, complex term, etc.
6. Stick by Your Faith
If you are a spiritual person, faith will get you through alot.
7. Communicate and Express
Talk to your kiddo. Talk to your family. Open communication is key.
Family members may experience strong emotions, such as guilt, anger, sadness, fear, anxiety, and depression. These are normal reactions to stress. It is useful to talk about these emotions.
8. Spend Time Together
As tempting as it is to allow the little ones to sit in front of their electronics all day, depending on your child’s chronic illness, you are wasting valuable quality time that. Make some dope memories.
9. Shared Caregiving Responsibilities
As parents, no one can care for your baby better than you can. But you’re not the energizer bunny. You need a break and you need support.
Responsibilities should be split among the family to reduce one person carrying the brunt of the load and possibly experiencing burnout.
10. Never Give Up
Having a chronically ill child is not easy. There will be days when you are at your wits end with it all. But remember your why – your kid.
11. Make Yourself a Priority
Self-care is not selfish. You pour into your cup so that you can show up and give 150% to your child. It’s ok to take a couple of hours off.
Self Care for Parents of Chronically Ill Kids
Parents of chronically ill kids might feel that the demands upon them have no end. They are constantly tired and lack the energy to do anything else. But self-care is important.
If you’re the parent of a chronically ill child, here are some simple self-care questions for a little self-reflection:
- How well are you managing the stress of your child’s illness? Let’s be real. Chronic illness is stressful and unpredictable.
- Can you make small changes in your routine that would help you recharge more effectively? Would you feel more relaxed if you read a novel or book of poetry instead of reading the news? Would it be more uplifting to watch a comedy on TV rather than a drama?
- Can you find 10 to 20 minutes in your schedule to be mindful? Simple things like mediation and prayer can help.
- How’s your organization? Physical clutter can lead to mental and emotional clutter. Writing things out and keeping structure will help put things in perspective.
- What’s your support system like? Do you have other people you can rely on, relate, and vent to? Technology is a wonderful thing. There are some support groups online so you don’t actually have to attend a meeting.
Don’t be alarmed if you’re not doing well. It’s never easy to find a healthy balance between caring for yourself and caring for your kid.
Being the parent of a chronically ill child is no different. Sometimes a “day by day” or “moment by moment” approach is as good as it’s going to get.
I know for a fact that I wouldn’t have survived my first year of myasthenia gravis without my mother and my grandmother. They were there for every doctor visit, every extended hospital admittance, and every emotional breakdown.
Thank you to all parents of chronically ill kids on behalf of all chronically ill kids. You are more than appreciated.