Motherhood is a beautiful and challenging experience, but navigating life as the mother of a chronically ill child is a unique experience that not all mothers can understand. The road can be stressful, lonely and exhausting.
Here are some ways to help you navigate life as a mother of a chronically ill child.
Confide in People You Trust
Your life as a mother has changed now that your child is living with a chronic condition. Because now, not only are you focusing on the standard aspects of motherhood, you’re also having experiences that are much different than other moms. Those experiences aren’t easy to manage, nor are they best to deal with in a vacuum.
As a mother holding all of this pressure inside can have long term impacts on your physical and your mental health. And this has an impact on your ability to be the person you most want to be for your child. It’s wise to confide in people you trust about what’s going on in your life. Building a supportive inner circle to talk with is known to significantly improve your quality of life, encouraging you in your lowest moments as the mother of a chronically ill child.
Build Relationships with Other Mothers with Chronically Ill Children
Find other mothers with chronically ill children in your community to connect with. These mothers are more likely to understand what it’s like to be in your shoes. These moms have been to the emergency rooms in the late hours of the night and have had to completely cancel plans/take off work to care for their sick child.
They get how much it all changes your life. And they can truly see you.
Building relationships with these moms helps you be a better source of support for yourself and your child wherever they are with their chronic condition. That comradery means so much in moments when you feel no one understands how you feel. And it helps your child connect with other kids who live with chronic conditions, as well.
What a huge benefit to the both of you.
Find Local Support Groups for Moms/Parents in the Same Boat You’re in
Many chronic medical conditions that children acquire have mom’s groups associated with them. The community of families dealing with your child’s specific condition may be quite small and being connected to that community can be very supportive to both your child’s well-being and your own.
Groups like this can be incredibly helpful when your child’s illness is confusing or you’re just not sure what to expect in the future. Parenting a chronically ill child doesn’t come with the same playbook as other kids have. The worries and anxiety that a mother of a chronically ill child deal with are immense, and finding a support group can be just the thing you need to get a handle on your fears about the future.
Ask your doctor or nurse for information or even search for groups online. Here are some chronic illness resources to get you started.
Avoid Comparing Your Chronically Ill Child’s Journey with Other Children
Conversations full of comparisons between kids can feel really brutal for mothers of chronically ill children. Your child’s experiences may not look like their peers, and it can feel challenging to know how to respond in these moments.
How do you even speak without feeling a lump in your throat?
As a mom, you may feel a wide range of emotions when you compare your child to other kids the same age. Some moms feel embarrassed, disappointed and even less of a mother when their kid isn’t doing “typical kid stuff.” Sometimes it’s impossible to know if your child or teen’s issues are from their chronic condition or a behavioral problem or some other age-related growing pain.
In these moments, do what you can to avoid comparing your child’s experiences with someone else’s kid. Quite frankly, it’s not fair for you or your child to compare the two.
There is no comparison. Accepting that your child’s journey with a chronic condition is different allows you to support and love your child just as they are right now.
If you have more than one child, be mindful of comparing your own children as well.
It’s a mental trap to compare your child with a chronic condition to your child without one. The two kids simply are not the same. And knowing that may make you sad or any number of other negative feelings.
When you find yourself tempted to compare your kids, remember that the compulsion comes from a place of grief, even if you haven’t yet realized it yet. Grief (or in some cases, Chronic Illness Grief) is a common set of emotions for parents of chronically ill children and it’s somewhat inescapable from time-to-time. This is especially true when your child is unable to do things or experience life as your other child does.
Be kind to yourself when these moments arise so you can deal with your grief instead of stuffing it down. That kind of behavior only acts as a stopgap for feelings that need to come out and be addressed so they don’t become a genuine part of who you are.
And if you notice that other people want to compare your child to other kids, this may well be a sign that your friend is not your true friend. It may be best to limit your time and energy with them. This can happen with friends, family or teachers.
Watching out for people who take positive energy from you is important when you’re balancing your own mental health and the well-being of everyone you care for.
Managing Your Own Mental Health is Priority as the Mother of a Chronically Ill Child
Motherhood is stressful in general, but parenting a chronically ill child comes with an increased level of worry, stress and despair sometimes on a daily basis. From worrying about how they’re going to feel day-to-day, to unexpected medical issues, constant medical treatments and even comparing your life to those around you, it is a very difficult space to be in emotionally.
Speaking with a mental health professional consistently will help you carry the stress more effectively, while also decreasing your risk of taking your feelings out on the rest of your family. A chronic illness therapist will help you put certain supports and habits in place so that life feels less stressful.
This is what’s needed to manage the challenges in front of you as the mother of a chronically ill child. By asking for help, you are setting yourself on track to get into a better headspace to support them and the rest of your family.
Schedule Your Medical Appointments
I often notice that many mothers of chronically ill children have a difficult time scheduling their own wellness appointments (i.e.,dentist, annual physical, hair appointments etc.). It’s sometimes hard to focus on taking care of your own needs when you’re balancing 10 other tasks to keep everything else going.
Just as airline attendants tell passengers to put their oxygen mask on first before putting it on others, you have to do the same here, mama.
Give yourself 30-minutes today to schedule your own follow up appointments. This allows you the space and time to focus on your child guilt free, while also prioritizing yourself. Take a checklist of questions to remind you what to ask aboutyour own health status during the appointment.
Carve Out Time to Do Something Exciting, Fun or Relaxing
When is the last time you did something that you really enjoy? And I don’t mean squeezing in 30 minutes of a TV show that you watch on your DVR right before bed (that you probably didn’t even get to finish before dozing off).
When did you truly have an experience that you were able to fully enjoy and be present with?
If you are like most mothers of a chronically ill child, you might find that your social life has taken a bit of a hit. You also are likely experiencing burnout and compassion fatigue from spending much time focusing on your child’s needs without proper self-care.
Consider what you want for yourself and choose one activity this week or this month that you want to designate as your fun experience. I strongly recommend having one really fulfilling event that you can do every week, and then on a smaller scale, have meaningful experiences throughout every day to fill your “joy” cup.
This helps you to feel like you’re still living and reminds you that you as a person matter. You’re more than just a mom. And of course, it will get you out of survival-mode for a bit. Yes, it’s difficult to make these experiences happen as you’re focused on your child’s health needs, but it’s also necessary for you to maintain your own well-being along the way.
Use Your Worries and Anger to Advocate for Your Chronically Ill Child
The feelings of concern you have for your child’s health condition and its impact on your life is completely valid. You’re likely worried about how they’re going to feel, how their future will look and how the world will accept them with their chronic illness. That being said, how you respond to those worries can make the most positive impact on you and your child’s life.
When you’re able to model calm, curiosity and faith in the future, even in the face of all that’s going on around you, your child learns those skills as well. Being the calm in the storm goes miles to help your anxiety response to stress to work towards your good instead of against you.
That said, the majority of people parenting a chronically ill child experience higher levels of anxiety than their peers do. Your counselor can help you use your emotions of worry, stress, and even anger to speak up for your child when they aren’t feeling heard. Whether it’s medical appointment anxiety or worries about returning to school, you can approach situations with calm and confidence.
Be Flexible with Yourself
As you navigate your life as a mother of a chronically ill child, I’m sure you have a lot of expectations of yourself. There’s a lot of stuff on your plate and you’ve likely become a taskmaster, checking the boxes and making sure that everybody has what they need as best as you can. I want to remind you that you’re doing the best you can and it’s important that you remind yourself of that right now.
At the same time, allow yourself some wiggle room to be human by being flexible with yourself. There are likely going to be days where the laundry doesn’t get done or your kids are eating sandwiches for the third night straight. And that’s OK.
Do Something Every Day to Care for Yourself
Everything that’s been said here boils down to gaining some perspective on your situation for your own good (and the good of your family). Parenting a chronically ill child requires you to take on an additional role of caregiver that is bigger than just parenting. This is a different lifestyle than most people truly understand.
In your life, not only are you taking your kids to their annual appointments and giving them their vitamins every day, but for your chronically ill child you’re also:
- Accompanying you child to specialist appointments
- Monitoring daily health symptoms/concerns/medication
- Talking with insurance providers
- Taking time off from work to care for your child
- Canceling personal plans when your child doesn’t feel well
- Advocating for support within the school system
- And more as needed
Caregiving is it’s own full time job. And you’re doing along with other parenting responsibilities, working and managing your home. There’s nothing easy about this life so it’s important that you pay attention to your own mental health and your energy.
Parenting in general tends to have time where you need to spend intensive energy caring for your children, but chronically ill children take up much more time. Not caring for your own needs, puts you at risk for more mental and physical illnesses because you simply have less time for yourself. This is why it’s important to devote time every day for your own health and well being.
Give yourself permission to not have it all figured out and to not be perfect. You’re doing the best you can! Flexibility will give you more space to breathe, make sound decisions and feel less stressed. Most importantly, it helps you cope with all of the stress that comes with navigating motherhood with a chronically ill child.
If I can help you with parenting a chronically ill child or any of the other concerns that come with mothering a child with a chronic condition, please reach out for help today.
