​Chronically ill children and how their parents can thrive in their grief.

Written by Mark and Sheryl Douras

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Being a parent of a chronically ill child places you in a unique category of grief.  This category could be called a “Living Grief”.  You have not lost your child through death.  But due to the illness, you now own a list of losses that you have to live with.  It is important for you to understand that this grief is what you are facing and will face. 
 
Let’s take a look at grief in general.  We at Refreshing Mercies see grief as a series of waves.  We use the image of waves because each element of grief is experienced more than once and just like waves the effects of grief are unpredictable and vary in size and strength.   The more you keep an eye on the waves the more you will be able to handle them.
 
Keep an eye on the “Waves of Grief” that you will experience.

• Shock – the surprise and unexpectedness that is felt in the midst of a traumatic experience.

 

• Denial – the inability to believe or face an unwanted situation.

 

• Anger – an overwhelming feeling of indignation for injustice, perceived or otherwise.

 

• Physical Distress – the body’s reaction to stress or strongly felt emotion, which can be seen in real physical symptoms such as upset stomach, change in blood pressure, or lowered immunity.

 

• Guilt or False Responsibility – a reaction that focuses on personal responsibility or inability to change the situation.

 

• Bargaining – a hope for the situation to change in response to some form of exchange or self-sacrifice.

 

• Depression/Sadness – a feeling of despondence creating a lack of motivation or continuance.

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• Fear – dread of coming events, responsibilities, and unknown future.

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• Testing – the eventual desire to try to reenter life.  Continued effort is the key.

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• Acceptance – a realization that one’s life has been, and making necessary changes to adapt.

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• Hope – a strong belief that there is meaning, purpose, and future because of God’s involvement.

 
Let us now consider the uniqueness of a “Living Grief”. 
In general, grief often makes us selfish.  This selfishness is reflected in our emotions, thoughts, and behavior.  It is also seen in how we spend our time and energy.  Grief can also cause us to isolate ourselves from those who love us and those who need us the most.  As a parent of a chronically ill child you must balance your needs with the needs of the rest of your family.
 
Here are 5 tips to help you survive during your journey of “Living Grief”.​​

1. Relate to your ill child.  Enter their world and let them enter your world.  Perspectives from both worlds are important for both of you.  Comfort and understanding, security and challenge, appreciation and respect are gained for all who participate in sharing these worlds.  

2. Playtime is important.  The meaning of playtime varies depending upon the age of your child.  It is important to both the parent and to the child as you engage with your child at whatever level and meaning of play they can participate in.  Your child needs to have you be part of their play world.  

3. Take care of yourself.  Remember the instructions when flying?  “First, place your oxygen mask on.  Then, help your child get their mask on.”  This principle is so important for your longevity in being the parent that your child needs.  Eat healthy.  Stay hydrated. Plan times of rest. Be faithful in some sort of exercise.  Taking care of yourself is key in managing your stress.  

4.  Manage your stress levels. Monitoring and managing your own stress is vital for your health, your child’s emotional health, and for the health of your marriage.  

5.  Strive to maintain a normal balanced life with your child when possible.  Your child and your family will benefit from structure and stability in the home.  

The American Psychological Association says:
“When a child is sick, parents often have a tendency to become overprotective. Try not to shelter your child or limit his activities unnecessarily. On the other hand, some parents of sick children become overly permissive — allowing the child to stay up late, for example, or to have extra snacks. But children crave structure, and may become scared or confused if you start breaking your own rules. As much as possible, try to maintain the same family routine you had before your child became ill.
 
Many parents struggle with how to speak to a child about his or her illness. Be sure you're sharing age-appropriate information. Don't give too much information, but also don't try to hide the facts. If a child overhears a doctor or doesn't understand what's happening, he or she may begin to imagine the worst.
 
Talk to your child about what he or she is feeling. Parents may be surprised by which aspects of an illness are most difficult for a child. For instance, children with cancer may find not being able to do things they used to do more stressful than uncertainty about their survival.
 
Sick kids can also feel isolated at school. Help them practice a short script so they can explain their condition to friends or classmates who ask questions or stare.
 
If you have other children, it's important to make some one-on-one time with them, too, so they know they're still important. Make them part of the team; help them figure out how they can be involved in caring for their brother or sister.”

https://www.apa.org/helpcenter/chronic-illness-child.aspx
 

Here are a few coping tools that may help you in your journey:
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1. Keep lists:

• Keep a record of what you are thankful for each day.  Add to this list each day.
• Keep a record of victories and growth no matter how small.
• Be honest with yourself about your losses.  First, make a list of the losses that you are experiencing due to your child’s chronic illness or handicap.  Then make a separate list of losses that you can think of that you will experience in the future due to your child’s chronic illness or handicap.

 
2. Once you have your lists:

• Discuss your lists with your spouse and family.  Getting things out in the open frees up feelings and communication.  This allows everyone to not feel alone.  It also helps each one see life from other’s perspectives.
• Pray over each gratitude, each victory, and each loss.  Thank God and ask Him to heal and strengthen your heart.  Share with Him your deepest feelings about these losses.  Through the coming days and years, keep this prayer life active.  God wants to walk with you through each reoccurring pain as they reenter your thoughts.
• Revisit these lists to see how the losses have been replaced with something new.

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3. Journaling is also a helpful tool to express yourself.  It allows you to get your thoughts out of your head without keeping them stifled inside of you or reacting explosively to other people.  This tool also allows you to learn from your journey by seeing your personal growth and, most importantly, seeing God’s activity in your life. 

4. Enlist the support and companionship of family, friends and your church community.
 
Now let’s turn to God’s Word.

Luke 17:11-19 says that there were ten men who had had the chronic disease of leprosy.  We do not know how long they had this decease or the severity of the decease.  But we do know a few things about what they must have experienced:

• Leprosy is fatal if it reaches internal organs.  As a result, these men had no hope. 
• Lepers were outcast.  They were not allowed to live with the rest of society.  This tells us that they and their families had been robbed of a normal life together. 
• We also know that all 10 of these lepers had an encounter with Jesus Christ.  After that encounter only one had a change of heart.  That one perused thanksgiving.  That one ended up carrying Jesus with them for the rest of their days. 

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Whether we and our children return to a normal life or not, the thing that makes the difference is if Jesus is part of that life.  Leprosy was not the only thing that was healed in that one man’s life on that day.  He saw the healing power of Jesus.  He was grateful for the healing that he had received.  I believe that he knew that he needed more physical healing.  Carry this one thought with you: Through Words of Christ, thanksgiving heals many wounds. 

By Mark and Sheryl Douras, Refreshing Mercies Ministry
 
 
 The following links to articles may be of interest.

https://healthcareinamerica.us/being-real-about-chronic-illness-a-message-for-parents-who-are-caregivers-5526dea281f
 
https://www.kaleidoscopefightinglupus.org/10-tips-for-parents-living-with-chronic-disease/
 
http://nationalautismassociation.org/coping-with-stress-when-your-child-has-a-chronic-illness-or-disability/