Parenting a Child with a Chronic Illness
“For it is by grace you have been saved, through faith - and this is not from yourselves, it is the gift of God.” -Ephesians 2:8
According to the National Center for Health Statistics (2013) www.cdc.gov, there are currently over 133 million Americans living with a chronic illness. Of those, it is reported that over 25% (or over 15 million) of children live with a chronic health condition (focusforhealth.org). Being diagnosed with a chronic illness as an adult is very complicated, but to receive this diagnosis as a child can be even more challenging. The diagnosis with brings not only physical discomfort, bur the realities of this diagnosis brings grief reactions and significant life changes. Children who live with a chronic illness and their families, have to learn how to adjust to living life with their “new normal”, which includes extended medical treatments, family transitions, and other multiple stressors.
Tips for Stress Management for Parents of A Child Living with A Chronic Illness
First, remember that your feelings are valid. Denial, anger, sadness, feelings of blame of self and others, and having roller coaster emotions are very common reactions. Questions such as “Why is this happening to my child?” is absolutely normal. Parents often want to appear strong in the face of adversity, but the reality is that you are only human and have emotions. Although your situation is very unique to you and no one knows exactly how you feel, know that you are not alone and try not to be so hard on yourselves.
Practice Positive Thinking. In order to live a joyful life, we must practice positive thinking, especially during an event such as managing daily life with a child’s chronic illness. Think for a minute. What if you turned all of those negative thoughts that you are having into something more positive? How might this help to brighten the situation?
Although you will experience not so good days, you must remember that pain doesn’t last always. Yes, there are some things that you have control over, but there are some things that you can control, such as your response to the situation. During these times, seeing your child in pain is a very present reality, and it is very challenging. It might be helpful to take the time to remember the little things that you have to be thankful for. Know that the procedure won’t be ongoing and try to look forward to having more good days than bad. Cherish the moments when you can share a laugh or a smile.
Don’t try to handle this on your own. No person is an island. Let’s face it, no matter how bad you want to, or no matter how much you think you’ve got it taken care of, you do need the support of others. We weren’t put here to do life on our own. Even though you think you might be handling this on your own, you are not alone. There are many people who do care. Don’t be afraid to ask for help.
Support systems can be instrumental in providing physical, emotional, psychological, educational and sometimes even financial support. Research has shown that social support systems or networks can contribute to greater psychological and emotional well-being. Support systems can promote a sense of comfort and also raise one’s self-esteem and instill a sense of safety and comfort.
Don’t be afraid to live, laugh, love and have fun. Whether it’s taking the time for self-care, watching your favorite comedy, or celebrating you and the love you give as a parent; don’t feel guilty for living, laughing, dancing and having fun. These are moments to be cherished. Small wins turn into bigger wins, which add relevance to your life, your child’s life, and the lives of others around you.
Show gratitude for today. Yes, be thankful that you and your child can see the sun, the rain, the moon and the stars, even though it may be through windows of a hospital room. It also helps to get out of the room when you can, and experience the beauty of nature. When you have been confined for so long, as many parents and children with chronic illnesses do, you learn to appreciate the little things such as hearing the birds sing, feeling the wind blow, and taking a deep breath. These little things that many people take for granted, turn into big things when you don’t have daily access to them. So, enjoy the little things. Talk a walk outside and enjoy the beauty of nature when you can.
Get involved and give back, even though you may have limited time and resources. Having a child with a chronic illness is very challenging, to say the least. The big focus is on medical procedures, treatments, and survival. It can be very beneficial to step out and do something that will help someone else. So how can you get involved even when you have limitations yourself? Do you have magazines or books at home that you can donate to the hospital waiting area? Children’s hospitals sometimes have arts and activities rooms for children to go when they need a break from their rooms. Do you have a special talent such as painting, singing, or storytelling that you can share not only with your child, but with other children in the hospital? You would be amazed how sharing your talents could not only be a stress reliever for you, but could help to touch someone else’s life as well.
Having a child with a chronic illness is an experience like non other. Know that you are not alone and you can make it through this. You are doing a great job! Your presence and support means more than you know!
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