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Two Years Later . . .

28 Feb

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Why a glimpse behind the curtain to the deeply personal and hidden grief of a bereaved parent? Not to inspire your pity; of that I can assure you.  Instead to inspire others to look beyond the surface of a grieving friend or family member. To consider how families are affected by loss, emotionally, psychologically and spiritually, as well as the unique family dynamics that result; which might help you comfort, support and encourage them. The bereaved desperately want to be understood, to have their feelings validated, to break free of the isolation, to mourn unrushed, to have another share their sorrow (not attempt to fix it). This post was written months ago and is not reflective of my current state of mind.

 

Two Years Later . . . 

This morning, the 2nd anniversary of Bethany & Katie’s deaths, I woke up in my in-laws guest room and told the Lord,

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I miss my babies.  I miss the life I used to live.  I miss the sweet ignorance of not knowing what disease plagued Gracen and Katie’s bodies, the unappreciated bliss of an unknown prognosis.  I miss my failure to understand that You, Lord, promised to walk through this life of trials with me, never once leaving me, but not to protect me from the free will of others and not to make life pain free.

 

I miss waking up with purpose.  Waking to enjoy the the birds singing and the sun shining.

I miss hugs and smiles and laughter — the sounds of life in my home.  I miss making cookies just to hear Katie’s whoop of joy.  Watching David and Bethany laugh over movie lines that cause me to roll my eyes.  Seeing Katie sit at Bethany’s feet joyful that her big sister was home from college.

I miss arguments and bad attitudes and snark and sass.  I miss seeing Katie curled up in David’s lap to watch a movie, David teasing Bethany and listening to him negotiate with Katie for hugs and kisses.

10246606_730773960317860_6144985397676167154_nI miss sibling rivalry and laughter and two ganging up on one.  I miss hearing how Gracen stood up for Katie at school, how Bethany watched out for Gracen and coming home to find all three watching music videos loud enough for the neighbors on either side to enjoy (?) too.

I miss praying for Bethany and Katie.  I miss inviting You, Lord, close instead of desperately clinging to You.  I miss what was and will never be again.  I miss the life I’d planned to have.  I miss ignorance and curse knowledge and I hate the last images of Bethany and Katie seared upon my mind, taunting me with their stillness, eyes once full of life and love vacant and unseeing.

I miss the me I used to be; the me I wish I could be again.  I miss the me who did not live with the ever present ache of loss.  The me who did not have to fortify herself for a simple trip to church, the me who did not have to plan in advance answers to everyday questions to guard my heart, my privacy and to avoid making others uncomfortable.  I miss genuine smiles.  I miss the ease with which I faced a day and the dark of night; of restful sleep, a focused mind, and simple motivation.  I miss anticipation and excitement.

IMG_3507 (2)I miss having all the bar stools at my counter filled. . .  I just miss so much — it all haunts me while I’m simultaneously thankful for Gracen and David.    Joy and sorrow side by side — both aware of all I have and all I’ve lost in every moment of every day.  One word defines my life — bittersweet.

And as I rolled over and curled in upon myself, I asked the Lord to help me get up and get going, to be a good house guest, to ignore the onslaught of sorrow, deep and numbing. To be able to be present instead of withdrawing from everyday conversation in desperate need for time alone — for the distraction fiction provides.

I finally rose at 10:30, hours later than I usually rise when we visit Kansas City.  And when I entered living room Sunny greeted me with a warm, “Good morning sleepyhead”, and Donna quietly went about frying an egg for me, then sat down at the table to visit with me while I ate.  No frustration, just uncomplicated acceptance and the kindness they have always shown me over the last twenty-eight years.  I found my heart full to the brim with both gratitude and sorrow — both of which my wonderful in-laws share with me.  I am not alone in my loss, in my sorrow, and in gratitude for what remains.

Empathy (shared sorrow) is so much more comforting than the fellowship of sorrow and pity. Pity pops in to express sympathy and promptly exits. Pity is love without commitment. It lures and deceives the grief-stricken with a promise of support only to silently slip away. Shared sorrow blesses the grieving by claiming a seat at the table of sorrow and dining on the bitter taste of disappointment and despair; drinking from the cup of agony before pulling out the dessert plates and loading them up with the sweet savor of united hearts and minds.  Shared sorrow is committed love.

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Helping the Bereaved Bear their Burdens

1.  People outside the immediate circle of loss, tend to view the death of a loved one from a broad, general perspective.  The bereaved grieve in fine detail. Acknowledging specific losses, unfinished plans, a lost legacy and the empty seat at the dinner table communicates to the bereaved that you care about the depths of their loss.

e9ee9b4bef3f86fba3571ecd3f0cbe512.  Speak the loved one’s name.  When a baby is stillborn or dies shortly after birth the family is left with a void they are unable to fill with memories of their child.  Using their child’s name, asking about the infant’s birth weight, length and hair color affirm the child’s worth. Avoidance equals isolation.

3.  Speak the loved one’s name-regardless of their age at the time of death.  As time goes on, the name of a loved one is spoken less and less frequently.  The bereaved want their loved ones remembered.  Mentioning their name, telling a family member you thought of their loved one and you miss them is a great blessing.  Speak about their loved one in a positive way, don’t just say how sorry you are for their loss.

4.  Many bereaved parents feel as if others treat them as if they are cursed following the death of a child. Avoiding bereaved parents because you are unsure what to say or do can frequently be perceived in unintended ways.  So, avoidance is not the answer. Call or visit and simply say, “I have no words.” “I don’t know how to help, but I want to be there for you. Tell me what you need to hear from me.”, and if you love the bereaved person keep trying to reach out, but don’t make them responsible for making you feel comfortable in their presence.

5.  Don’t expect the bereaved to step back into ministry roles and other normal activities. Some will return quickly, some will take six months or a year. Some will never return to that specific ministry or activity. Be sensitive. Churches are often in need of members to serve, but be careful not to push.

cdd180cb45e020a4fd5a2efa4c6415dd6.  Never compare the loss of a loved one to the death of a pet (it’s more common than you think). The loss of a child and a spouse are the most devastating losses the bereaved endure. Don’t tell the grief-stricken that you understand how they feel because you lost a uncle, grandparent or parent. The level of intimacy in the severed relationship determines the depth of grief experienced.

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 7.  When a parent loses a child, never say, “Well at least you have two more.” or “Be thankful for the ones you still have.” The death of one child doesn’t negate the parent’s love for the rest of their children. Grief and gratitude can and do co-exist. And the birth of subsequent children do not replace the child that died.

8.  Don’t be offended if the bereaved don’t personally call you to notify you of the death. It is not at all unusual to for the bereaved to be too emotionally overwrought to call even their closest friends and family members. It’s is however, very common to contact one family member and ask them to contact the rest of the family. It’s not a slight. Some are busy at hospitals, others are in shock, and some just can’t speak.

9.  Don’t ask for details especially in the case of suicide, murder, or accidents. Those who need to will share that information with someone they are close to. Others do not want to remember their loved one that way and may have been traumatized by things they’ve seen and experienced. Rehearsing it is retraumatizing and sometimes leaves the bereaved feeling as if you care more about the gory details than you do about them.

10. If you have pictures of the deceased, email copies or get prints made and bring them to the family. Every picture is a coveted treasure.

 
7 Comments

Posted by on February 28, 2016 in Chronic Illness, Faith, Grief, Muscular Dystrophy

 

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7 responses to “Two Years Later . . .

  1. Melanie

    February 28, 2016 at 7:57 am

    Janet, once again your words reflect my heart. It will be two years April 12 and I miss the me that used to be, I miss anticipation and excitement and oh how I miss motivation to fill a day with meaningful and useful activities and ministry to those I love. It’s like I’m in the anteroom, waiting for the door to open onto real life. And, in many ways, that’s where we all are whether or not we realize it–this life is not all there is–but losing a child (or children) brings that reality to light in a way that we cannot ignore. Maybe that’s what we ultimately have to reconcile in this grief journey. Maybe we have to figure out how to live while still waiting to live. Right now, it’s just too hard for me to do. Thanks for sharing.

    Liked by 1 person

     
    • findingjoyinhim41

      February 28, 2016 at 9:38 am

      I love you, Melanie.

      Liked by 2 people

       
      • Melanie

        February 28, 2016 at 12:58 pm

        Thank you Jenny. I love you too. And the journey is made easier by faithful friends.

        Like

         
    • Janet Boxx

      February 28, 2016 at 9:53 am

      You’re right, this life is not all there is. Maybe, amid the grief we can rejoice in the knowledge that we will each have far more days with our children, than we ever could have enjoyed in this fallen world.

      Liked by 1 person

       
      • Melanie

        February 28, 2016 at 12:59 pm

        You’re right, Janet. Time will be no more and we will be with them forever.

        Like

         
  2. Julie

    December 27, 2019 at 10:10 pm

    It is seven years and I don’t feel any happiness. I can’t seem to go to church the last six months- I am all alone and I can’t turn off the bad memories. It is like I’m lost in my own world. I feel like God left me too

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    • Janet Boxx

      December 28, 2019 at 2:29 pm

      Julie,

      Every loss is devastating, but I have learned that the circumstances surrounding a loss can make recovery much more difficult. For example, sudden unexpected losses are traumatic, while a cancer diagnosis enables people to prepare for loss although the treatment itself can be traumatic for loved ones. Additionally, trauma is cumulative. Past trauma impacts one’s ability to cope with new traumatic experiences. The fact that you continue to be plagued by bad memories leads me to think that you might be suffering with some degree of PTSD. There are memories and then there are flashbacks. Memories you experience from a distance. Flashbacks differ in that you experience them as if you are actually there in that moment.

      I have struggled with depression, anxiety, and PTSD. I didn’t realize that when I rolled the tape of accident scene memories in my mind that I was actually initiating flashbacks. I’ve seen a grief counselor, a trauma counselor and a psychiatrist (because they can prescribe medication, not because my counselors weren’t helpful) since my daughters died. I still see the psychiatrist every few months to monitor my medications and deal with ongoing issues. If you read my WordPress About page then you know that my life is complicated by progressive disease as well as grief.

      I don’t know what kind of support you’ve received from family, friends, your church family, fellow bereaved parents and professionals in the last seven years. Friends, family and the church often provide shorter term support than is needed and generally hold unrealistic expectations for loss recovery. Why you can’t go to church is as important for emotional and spiritual healing as the fact that you can’t seem to make yourself go. You are not alone in this regard. I struggle to attend church myself and was shocked to discover that a great deal of other bereaved parents, many who would describe themselves as strong believers, no longer attend church for a variety of reasons. Some have trouble coping with fellow believers who think they should be finished grieving. Others feel pressured to return to ministry or to minister to the newly bereaved. Many are struggling to reconcile scripture with their reality and others find anxiety, social and/or situational, crippling, which may or may not be confined to church settings. Most recently I have been dealing with anxiety attacks when I leave home or when others visit my home. What I can tell you is that there is help available to overcome each of these and many more. Not that there are quick and easy solutions, or even that the solutions fit your own or others expectations, but one thing I’ve learned is to become more comfortable with adaptations that fit my own unique needs and circumstances. The further we drift from God’s Word and His people the less we will feel connected to a Him. So, it’s worth it to figure out and address whatever has made you feel uncomfortable or unsafe at church. There came a point in my personal journey through grief where I had to make peace with God’s sovereign choice to allow my daughters’ deaths – His decision not to intervene and spare their lives; believing with all my heart that He could have done so. It is the single most painful spiritual hurdle I’ve ever confronted and I believe my recovery hinged upon my ability to do so. I don’t know if everyone finds themselves at this critical juncture, but I believe it is most difficult for those who believe their child was unsaved or question their salvation as I did with my oldest daughter. In order to make peace with her death and the death of my youngest daughter, I needed to trust in God’s character as described within scripture. To trust that He is not willing for any to perish. That He extends every opportunity for every single individual He personally created to choose to follow Christ. To believe wholeheartedly that an extra day, month, year or a multitude years would not have resulted in a different choice for the lost. I also needed to trust that God rescues His children from this world filled with sin and evil as soon as they have fulfilled their God ordained purpose for life. That He doesn’t allow His children to languish here on earth without purpose but instead takes them home to their reward where sin and evil can no longer touch them. I also needed to trust that God looks on the heart and He alone knows the eternal destiny of every individual made in His likeness.

      I am not a counselor or trained to offer you advice. I can only share what I’ve learned through the school of hard knocks, talking with other grieving individuals and a lot of bereaved parents, my own research, and working out my faith in cooperation with the Holy Spirit. I don’t know what you’ve tried over the years but I can recommend books, blogs, online support groups, and some professional services that you might find beneficial to healing and grief recovery.

      One thing I can’t stress enough is that grief recovery doesn’t in any way mean that loss is something we ever “get over” completely. Grieving is a normal and healthy response to loss. There is an active term of bereavement; a time when an individual works though all the thoughts, feelings, questions, confusion, anger, bitterness, frustration and angst created by loss. However, if an individual is doing the work of grief, examining and working through those issues, then that period of active grieving ends as an individual processes their thoughts and feelings and makes peace with their loss. If an individual avoids or refuses to do the work of grief, that period never really ends. But, it should be understood that grief recovery in no way means that an individual will cease to feel grief over their loss throughout life. Death stings and regardless of the work an individual does in the aftermath of loss, there will be moments, sometimes days, when feelings of sorrow and sadness overwhelm the bereaved.

      These are the things, aside from books and blogs that I recommend to fellow bereaved parents as I have found them personally beneficial.

      1) I always suggest that others see their primary care physician as grief can result in a great number of medical conditions, most commonly depression and anxiety. Please don’t let societal stigmas prevent you from getting help. Anti-depressants and anti anxiety medications don’t fix grief but they can help you be better able to cope with it. An appointment with a psychiatrist or a trained grief counselor can be helpful in working through your grief and also identifying and getting help for PTSD. I did EMDR (a form of trauma therapy) for flashbacks. It might rescue you from the bad memories that plague you. You won’t forget what happened but it can minimize the power those memories hold over you and reduce the trauma they cause.

      2) While We’re Waiting is a non-profit, faith-based organization that ministers to bereaved parents through the distribution of hope packages, one day and weekend retreats, and face to face support groups in several locations throughout the US. Every service they provide is offered free of charge. You can find them online at whilewerewaiting.org. I attended a one day women’s mini retreat and a weekend couples retreat with my husband and highly recommend both or either individually.

      3) There are two online Facebook groups I particularly like. They are both faith-based, closed groups so anything shared there is not available to all your Facebook friends. Search Facebook for While We’re Waiting and Heartache and Hope: Life After Losing a Child if you are interested. Personally, I think participating in online Facebook groups was the single most healing thing I did for myself.

      4) GriefShare is a Bible study program frequently offered through churches around the country. It’s an extremely educational program that includes video of professionals and individuals who have experienced a variety of losses, a workbook for individual study, and small group discussion of the material that serves as a support group. The GriefShare organization also offers Facebook support, daily email encouragement, and retreats. I highly recommend this study both from an educational and a recovery standpoint. In fact, I wish churches offered this study to their entire congregations for the sole purpose of educating the body of Christ about normal grief related thoughts, emotions, questions and reactions. Grief education would enable the body to minister more effectively to the bereaved, both saved and lost. For example, What might change if the body of Christ knew that statistically it takes the average parent 7-10 years to recover to the point that the loss of a child no longer impacts their daily lives? To find a study near you visit GriefShare.org.

      Julie, it is possible to get stuck in grief. If you feel as if you aren’t healing, aren’t any better than you were a year or two after you lost your child, then you might need some professional help. That’s nothing to be ashamed of and frankly it’s no one’s business but your own. Deep wounds heal slowly and the deeper the wound the longer and more complicated the healing process involved. If you haven’t tried support groups or seen your doctor, I humbly suggest you give those a try. But do so armed with the knowledge that not everyone is safe to share with. Safe people validate your feelings and most affirm your ability to move forward. If your doctor lacks grief education and proves to be unsafe to share with you might simply ask for a referral to a mental heath expert for evaluation. You are in this world for a reason and your well-being is important. You may not feel God’s presence or His love right now as grief clouds your perceptions, but you can trust in His word which assures you that He loves you desperately, He is near to the brokenhearted, doesn’t crush the bruised in spirit, or snuff out a flickering flame of faith. He is compassionate, faithful, merciful and longsuffering toward us. Any message to the contrary is from Satan, the accuser of the brethren. Tell him to get behind you and cling to the truth of scripture.

      I am so sorry for your loss all of the suffering you have experienced since. Please let me know if I can provide you with helpful books or blogs or just an occasional word of encouragement. We need each other on this difficult path.

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