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

2/2/2019

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Written by Mark and Sheryl Douras

​
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:
​
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.
​
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. 
​
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/

 
 

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Thanksgiving In Your Grief 2018

11/22/2018

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Written by Mark and Sheryl Douras

​​

Psalm 116:17 offers a loving challenge for us who face loss during Thanksgiving.  It says, “To You I shall offer a sacrifice of thanksgiving, and call upon the name of the Lord.”  The interesting thing is that two verses before this verse the author reveals that he probably recently lost his mother.
 
Here are two thoughts to ponder.  One, its ok not to feel grateful.  Let’s face it.  Your emotions can be all over the place on days like this.  Remind yourself that emotions should not run your life.  Now ponder this second thought.  Expressing gratitude helps you get a grip on reality.  The writer of this Psalm chooses to find things to be thankful for and to express it to the right person, God.   Expressing thanksgiving to right person sure helps you live in reality.  Express your gratitude to those who love you, they need your love. Express it to God, He loves you the most. 
 
Happy Thanksgiving from Refreshing Mercies.  

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Grief Holiday Guide

11/10/2018

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Written by Mark and Sheryl Douras

What kind of thoughts did you typically have when you would think of the word “Holiday” before your loved one died?

Family             Decorations                 Busy                Food                Guests
            Travel           G
ifts                Shopping                     Music               Memories             Money  Hectic              Traditions                    Baking             Turkey             Crafts
              Worry     
Programs        School vacation           Children          Grandma’s recipe

​

What are new thoughts or words that come to mind when we say “Holiday”?

Dread               Different                      Alone               Adjustments                Worry
            Now what?                  Tough              Confusion                    Unique             
Escape             Pain                 Avoidance                   Fear                 Lonely                         
            Exhaustion                              Why bother?                Effort


It is time to refocus.
  • What is the true meaning of Thanksgiving? Giving thanks for what God has done in our lives and in the lives of others.
​
  • List what you can be thankful for:

_____________________
_____________________
_____________________
_____________________
_____________________
_____________________



  • What is the true meaning of Christmas?
  1. Celebration of Christ’s entrance into the world to fix what sin had destroyed.
    1. Salvation from sin
    2. Ultimate ending of suffering
  2. Jesus came to deal with the source of suffering – sin.
    1. We can have a relationship with God
    2. We can experience His comfort, peace, joy, healing through that connection with God.
    3. He took our penalty for sin on himself.
  3. The original Christmas gift is God’s Son Jesus.
    1. That is why we celebrate
    2. We each can personally receive this gift – it’s free!








What makes the Holidays tough?
  • Decorating (exhaustion, memories)
  • Change is always hard
  • Triggers (music, smells, tastes – holidays magnify the senses)
  • Loneliness (empty chair)
  • Concern for children/other family members
    • You will need to plan to help them face the changes, too.
    • Confusion of what to do, how to act
    • Unique needs
  • Depression (watch out for suicidal thoughts)
  
How to face the Holidays
  • Don’t avoid the Holiday
    • Face it. It will hurt. Respect and take care of your emotions
    • Don’t fake it – putting on a mask only keeps others from knowing how to pray for me.
    • Don’t numb the pain (it will come back stronger later if you do)
  • Planning helps - It keeps things more manageable and meaningful
    • Make lists
    • Ask, “Do I need it?” “Do I like it?”
    • Creates opportunities for new traditions (different type of decorating, different time of celebration, different location to celebrate, and creating new memories).
    • Give yourself time to adjust – it could take several holidays to adapt to the absence of my loved one.
  • Healing comes through relationships
    • Good relationships promote healing
    • Learn to assert yourself – it’s OK to say “No”, it’s OK to have an opinion.
      • Say “Thank you for the thought but I have decided…”
    • You can decline or accept invitations
      • Don’t overdo your social stamina
      • It’s OK to go for just a portion and know when it’s time for you to leave.
    • Don’t fear your tears
      • It may seem uncomfortable but it is part of taking care of yourself.
      • Real friends will be accepting
    • Ask for and receive help from others
    • Be flexible
  • Healing comes through your relationship with God (learn to deal with your pain vertically)
    • Keep in prayer
    • Keep in the Word
  • Other suggestions
    • Put on cheerful holiday music
    • Attend a musical program at your church/community
    •  Select uplifting radio
    • Open your holiday to a hurting individual
    • Spend time serving at a local mission or shelter
    • Do something in honor of your loved one or do something they would have enjoyed.
    • Give a gift or money in memory of your loved one
    • Watch out for seasonal depression (you may need to give yourself special care during cloudy or gloomy days)
    • Holiday wreath or small tree in honor of your loved one
    • Create a scrapbook
    • Purchase a special Christmas card for your loved one and write a note to them that tells them of you love and your growth in the situation. Put the card on the mantle or hang on your tree.
    • Memory box
      • On slips of paper write all the intangible gifts your loved one gave
      • Place the slips of paper in a decorated box. Keep the box in a handy location and add to it at any time. Allow / encourage others to add to the box if they so desire.
      • Put the box under the tree as a symbol of the memories you created together, and of the gift they are to you.
Figure out how to live, not just survive. Look for the joy.
  • Change of perspective. You cannot change what happened but you can change how you react and live.
  • Joy happens when you look for it. Memories of the heart lead to a full heart.

Written by Mark and Sheryl Douras, Refreshing Mercies Ministry 
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THRIVING DURING THE HOLIDAYS – AND BEYOND

11/5/2018

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The holidays are a lot of things – but they are certainly times that can intensify all that we are feeling and going through.  They can be times of joy and togetherness. They can also be times of pain and loneliness.  Often they are a combination of both. Believing that God wants us to thrive and not just survive (John 10:10), here are a few tips to consider with Scripture for your healing and insight:
  1. Be honest - It’s OK not to feel OK. It really is! In fact, it’s important to be honest about our emotions - with God and with others.  Going through difficult times is both painful and disrupting. So feeling as you do is understandable.  At the same time, it’s important to not allow our feelings to completely consume us.  (Psalm 73:26)
 
  1. Draw close to Jesus - He is a man of sorrows and acquainted with grief. Pour out your heart to Him (Psalm 62:8). Let Him comfort and walk with you. He knows.  He cares.  He is your companion. (Psalm 31:7; Psalm 34:18; Isaiah 63:9; 1 Peter 5:7; Hebrews 13:5).
 
  1. Express yourself through a grief journal - This will help you avoid taking out your negative feelings on others.  Using a grief journal will give you insight into your journey during the holidays and beyond.  (Job 19:23)
 
  1. Talk with others - Talk with other bereaved people, or with friends and family members who’ve experienced losses to find out how they get through these special days.  (Proverbs 24:6; Proverbs 17:17; 2 Corinthians 1:3-5)
 
  1. Stay close to supportive people - Don’t isolate, but hang around with people who know you, love you, understand you, and support you. Together, engage in healthy activities.  (Ecclesiastes 4:9-12)
 
  1. Don’t numb your feelings - Numbing emotional distress with chemicals creates more depression and increased problems later on.  Make sure your coping mechanism is not illegal, immoral, or harmful for you or others.  (Isaiah 55:2; 2 Timothy 2:22)
 
  1. Do something for others - The best way to stop thinking about yourself is to think about others. It’s amazing what happens to us when we go outside our four walls to love and serve others. (Proverbs 11:17, 25).  
 
  1. Know your limitations - Don’t overextend yourself. Don’t promise more than you can do. Leave yourself some healthy spaces of rest and relaxation.  Have an exit strategy when you attend holiday events.  (Matthew 14:13a;Mark 6:31)
 
  1. Plan Ahead. Decide beforehand what you can do and schedule things accordingly. Remember, an invitation is not an obligation. Take time to decide what is best and healthiest for you right now. (Luke 14:28; Proverbs 16:9)
 
  1. Begin some new traditions - Choose to keep those holiday traditions that are meaningful and enjoyable. Give yourself permission to discard those that are painful or at least put them on hold until a future time. Try new traditions that usher in new meaning and reflect new beginnings.  (Isaiah 43:19)
 
  1. Give yourself permission to feel some joy – Don’t feel guilty about experiencing some joy – even in the midst of your sadness.  It is not disrespectful to the loved one you lost.  Grief and joy can go hand and hand.   (1 Peter 1:6-9)
 
  1. Look for small moments of joy - We tend to find what we look for. So chose to notice or even create moments that are enjoyable and meaningful to you – special Church service, movie, food. (Romans 15:13)
 
  1. Establish healthy, realistic expectations - Refuse to compare yourself or your situation with others or the past.  Since all relationships have their challenges, make a deliberate choice to see the holidays as a time to draw close to loved ones – and not as a time to fix anything. Focus on your relational bonds and not on family problems.  (James 1:19; Proverbs 17:27)
 
  1. Develop an attitude of thankfulness - Rather than simply focusing on what’s missing or what’s different, why not choose to notice and highlight the many special and positive blessings that you enjoy? As you do, you’ll discover your feelings begin to change as they try to keep up.  (Psalm 107:1; Psalm 103:1,2)
 
  1. Get up and move - Take care of your physical well-being. Healthy foods will give you strength and energy; fattening and sugar-filled foods can worsen your depression.  Try to get some exercise which will produce natural stress relievers.  (Isaiah 60:1, I Corinthians 10:31)
 
  1. Get some sunlight and fresh air - Winter can take its toll on your emotions by the loss of sunlight you experience.  But being in nature can help compensate for the limited sunlight. God gave us the healing blessing of nature.  Continually expose yourself to that gift that He has given you.  (Ecclesiastes 11:7)
 
 
As difficult as it may be, the holiday season only lasts a short while.  And with Christ with us, our Emmanuel, we will not only thrive during the holidays – but beyond as well (Philippians 4:13).

 
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​Helping A Grieving Friend Through The Holidays And Beyond

11/5/2018

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In general, the best way to help those who are grieving during the holidays is to let them know you care. They need to be remembered, and they need to know their loved ones are remembered, too.


  1. Don’t avoid them.  – Don’t Allow your discomfort to keep you distant from those who are hurting and grieving.
To do so will rob them of your love and robs you of growing outside of your comfort zone.
 
2) Don't obsess over saying the right thing – Far too often we don't reach out to people who've experienced loss because we're convinced that wrong words will cause more pain. But not reaching out at all can be equally or even more hurtful. An email, text message, letter, or greeting that acknowledges their loss and asks how they're doing can make all the difference.
 
3) Keep your gestures simple – Remember, helping is not about you or accolades that you may receive.  It is about being the expression of God’s love.  Little is much when God is in it.  
 
4) Pray and ask God what simple part you can have in expressing God’s love to them – They may need help with basic household chores or may just need a friend to check up on them. God knows their needs and often uses people like you to bring comfort and encouragement in times of need
 
5) Don't force someone to enjoy the holidays – Supporting someone who is coping with tragedy or loss during this time of year doesn't mean trying to make them feel full of holiday cheer. Instead, your goal should be to accept whatever holiday experience they want. No Christmas tree for them? Fine. Do they want to skip religious services this year? OK. The best thing you can do is follow your loved one's lead.
 
6) Cherish the old memories and create new ones – Sweeping statements or talking in broad strokes about someone else's pain probably won't help. What will provide comfort is your willingness to cherish old memories and create new ones with them. Focus on small moments where you can genuinely connect, rather than looking for opportunities to talk them out of their grief.
 
7) Give them the gift of being present – Words are good.  Cards are encouraging.   Gifts are appreciated.  But what often is needed is someone to just be there.   Your calm and unhurried presences helps them live in the moment, to experience reality.  It also opens the door for a meaningful listening opportunity.  Sometimes grieving people just need to release what is in their hearts to a loving and patient ear.  Be present just to listen.   
 
8) Be ready to listen – If they want to talk about the deceased loved one or feelings associated with the loss, LISTEN. Active listening from friends is an important step to helping him or her heal. Don’t worry about being conversational…. just listen.
 
9) Be supportive – Be supportive of the way the person chooses to handle the holidays. Some may wish to follow traditions; others may choose to change their rituals. Remember, there is no right way or wrong way to handle the holidays, as long as it is not illegal, immoral, or harmful to them or others.
10) Invite the person to attend a religious service with you and your family – It is often hard for a grieving individual to do things alone.  A supportive and encouraging friend could be just the thing they need to face the world a little at a time.
 
11) Never tell someone that they should be “over it” – Instead, give the person hope that, eventually, they will enjoy the holidays again.
 
12) Remember with them – Remind the person you are thinking of them and the loved one they lost. Cards, phone calls, and visits are great ways to stay in touch.  Don’t be afraid to say the loved one’s name.
 
13) pray for them and with them –
Bring them to the God of all comfort so that they may find grace and mercy to help in their time of need.
 
14) Remind them of the comfort of God’s Word –
               In the multitude of the anxiety within them God’s comfort can delight their soul. Psalm 94:19
 
 
 
 
Prepared by:
Refreshing Mercies Ministries:
Website - RefreshingMercies.org
Phone - (309) 713-6261
 
Peoria Rescue Ministries:
Website - PeoriaRescue.org
Phone - (309) 676-6416
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