May 19, 2009

Guilt Is a Blood-sucking Leech

The first truly distinct feeling I had when Elli died, apart from the pain of being cut off from her, was guilt.

Is guilt.

For guilt has leeched onto me and threatens to suck my life out.

Elli died in our care, in our home. Caring for her was our responsibility that day --we had not delegated to the hospital staff or to a babysitter.

Yet, she slipped away unnoticed in the early morning hours, while I drifted in and out of sleep, wrestling unsuccessfully to master my body and start my day.

When we found her still in her bed, we did everything we could at that moment. But it was too late. She was already gone.

A seven-month wrestling match began that morning. I struggle daily with myself over what I did not do, what I did wrong, how I failed her at the most critical moment of her life.

Did we miss something the day before? Did I screw up her medicines somehow? Should I have given her that formula at 11pm the night before? Why didn't I check her pulse and oxygen level? Was her color bad? Did I monitor her breathing enough? Did she need extra breathing treatments? Should we have left her alone that night? Had she cried out and I didn't hear, or worse, sleepily ignored her? Should we have taken her to the hospital? Did decisions we made months prior set this in motion? Should we have had the tendon-lengthening surgery that resulted in such massive internal bleeding? Did a clot from that hematoma dislodge and give her a deadly stroke or pulmonary embolism? Why did we put her through that painful surgery and recovery when she only had a few more months to live anyway?

Then I wrestle back. She showed no alarming signs. She ate well at dinner. She was resting peacefully when I checked on her late the night before. When I double-checked all the drug interactions of all the medicines she received, nothing showed up. Her eyes were closed when we found her, so we know that she was asleep when she died, not awake. We made the best decisions we knew to earlier in the year. We didn't know how short her time with us was. If she had been in the hospital, what sort of painful interventions might we have tried? What sort of agonizing decisions might we have been forced to make? This was clearly out of our control.

In part, I set myself up for this. From the first second we learned she was so ill, our precious 3-day-old first child, I determined to be with her when she died. She would not be surrounded by strangers. She would not lay on a cold steel table alone when she breathed her last. I was there when she was conceived, I was there when she was born, I would be there when she died.

As she grew and her health conditions became more and more complex, I reasoned that she would die of illness... or in surgery. Either way, we would know it might be coming. We would be there.

But God did not allow that. God did not grant me that deep desire of my heart. I tell myself that God knew what was best for Elli and for me, and that perhaps the agony of that moment would have been more than we could bear.

But the agony of finding her gone forever without me is also great beyond words.

"How could this be the best way?" my heart begs. "I wanted to be there, to see her face, to say good-bye."

It has been seven months, and I have yet to shake the guilt completely. Ever so slowly, my heart is accepting what my mind is trying to say: She is gone. And it is not my fault.

17 comments:

livinglifeaslesley said...

Oh Joy, my heart breaks for you and I shed tears for you and for Elli as I read this. We all struggle with guilt, and I see how you could feel this way, but deep down you need to rest assured that it was simply her time. The Lord was calling her home and it didn't matter what measure you would have done, it wouldn't have changed the fact that he wanted her home that very moment with him in Heaven. I am sorry you didn't get the closure and ending that you wanted, many of us unfortunately never do, but try to stay focused on what an amazing life you gave this precious one that the Lord gave you the honor of raising, her smile, her happiness: a result of you and your love for her. Stay strong Joy, I continue to uphold you and your family in prayer.
Lesley

Anonymous said...

I pray frequently for you! You are my little girl, and I hurt for you and with you. I don't have answers for you. I don't think I am suppose to. For His own reason and purposes God has you on this journey of grief. Cling to Him that He may do the sanctifying work in you that He intends. Love you for always, Mom

Sharyne said...

Joy, I love you. You were such a good mother to Elli. God knew she needed you for her Mommy. You did an excellent job! I only pray I can do half as good a job with my Millie. You are one of my heros! We pray for you and your family every day.

Scott said...

I was there, too, and remember getting up sluggishly at 6:55, splashing my face with water, dunking my head under the sink, brushing my teeth, and getting dressed in the minutes before finding Elli with warm beads of sweat still on her forehead at 7:10.

The best way to explain it is that her dark room had a scent of heaven when I walked in. Just minutes, perhaps seconds before I had entered, God had opened heaven, reached down and snatched her spirit up to glory. No scandals, no suspicion, no compromised care, no struggle, no trauma. She was as still as glass. She was free. She was finally free of her atrophied muscles, her curved spine - her uncooperative hands and tongue.

This, my own close brush with heaven as she experienced the highest joy of entering it, and the manner in which God was pleased to take her so peacefully, has been a place for me to find rest in these days.

Make no mistake. I second guess. I want her back. And if I can't have her back, I want to at least re-live October 18 and lay down next to her in the bed and hold onto her with all my might all night long. But I am not the one who knows what's best for me. And I am not the one who formed Elli in the womb, and who knows what is best for her.

Guilt-ridden grief is indeed a leech, and the Evil One would have us be consumed by it and lose heart, and eventually make shipwreck of our faith.

But Christ the Man of Sorrows is acquainted with our grief. He suffered loss and wept bitterly. He is the Lover of our souls, and is a Good Shepherd. He is the only wise God, and His ways can be hard for me to understand.

So I am only left to dwell on what is true. It is true that we who have the firstfruits of the Spirit groan inwardly while we're here on earth, awaiting our adoption as sons and daughters, the redemption of our bodies, as we witness other bodies being redeemed ahead of ours, and some prematurely. And it is true that our sufferings aren't worthy to be compared to the future glory of that day ou adoption will be complete, and our own bodies will be redeemed.

It is true that we will see Elli again. And it is true that we will see the One who snatched her up in His great mercy. And all things will be made right, and new. And it will be great.

John Lennox made a profound statement at the recent conference I attended. The human eye is the most sensitive organ in the human body. We only wipe our own tears in this life, and no one can do that for us. But the Bible tells us that the very last tear we ever shed will not be ours to wipe. God will wipe away the last tear we ever shed. That's how much he cares for us. That's what we have to look forward to.

Anonymous said...

Thank you Scott. Thank you for sharing from your heart, and how God is working in your heart and life especially around our Elli and her day of home going. We have a lot to be thankful for, in the way God took her home so quietly and peacefully as far as can be determined. I am truly thankful for that, and I try to think on Elli as she is right now, and I try and think and dwell on the many happy and good memories of and with Elli. Again, thank you Scott. With love from Anne, Mom, and Gramma (of Elli)

Adwen, the Green Fairy said...

I love you so very much. You and Scott were designed and equipped by our savior to give Elli the care and love she needed. You are such wonderful parents and spouses. It hurts and the guilt we feel is hard to wrestle, it's hard to "think on what is true". I love you and the tears come both at the loss of our sweet Elli and at the pain you feel.
~Hug~
Heather

Mmot988 said...

Oh, Joy and Scott. What deep emotions run through all of us as we share in your hearts' cries--your hurt, your questioning, and your deep faith. Joy, I can't fathom as a mom what you went through. I know our God is above all the only One able to comfort you and get you through this. Scott, thank you for that beautiful "piece" you wrote. We love you both dearly, and continue to pray much for you. On another note, I honestly think with the way that you both are gifted in writing, that you could write a book about all you went through with Elli, and all that you are going through now. I think it would be immensely profitable for many, and a great testimony of God's grace and love.

Love you much,
Becky

JBDaddy said...

You guys are amazing people and I am privileged to count you as friends. Thank you for allowing us to look inside your hearts and souls and hear your honesty. May God continue to use you to minister to others around you as He continues to guide you on this journey. We continue to pray for you and uplift you daily

Anonymous said...

Joy, I have to say that I cannot truly and completely know what it is like to lose a child you have lived with for as long as you lived with Elli. But I do know how heart-wrenching it was to lose my precious little Nika after only being allowed to carry her inside of me for 3 months. You said that you wondered what you did wrong, and how you had failed her. When we lost a baby, I wondered what went wrong too.

Before we had even considered starting a family, I had been praying every day that God would give us the exact baby He wanted us to have, at the exact time He had appointed. When our first child was born, I continued praying the same prayer for our next child. So I couldn't understand why this second baby, who I thought was to be God's choice for us, would be taken to Heaven before I could even meet him or her. And yet I have learned that, for some reason known only to my Heavenly Father, that baby WAS His perfect choice for us. And I firmly believe that God created a wonderful, perfect human being and placed him (or her) inside my womb to be nurtured and loved for a few short months. Unlike your Elli, my Nika was never meant to live on this earth. But like your Elli, I know that God's perfect, sovereign will was somehow accomplished through Nika.

Three and a half years later, I still grieve for Nika. But I find peace in knowing that God's will was accomplished. And I am honored that God chose me to be the mother of my special little baby.

I am still praying for you, Joy. And knowing from personal experience how long the grief lasts, I will continue to remember you in my prayers for many years to come.
Angie Meredith McArthur

Ann Voskamp @Holy Experience said...

Joy,
I ache with you....
Know this morning, I whisper your name to Father's heart... for grace and peace and deep, unwavering comfort.

You are grace,
Ann

Debbie Nelson said...

Joy and Scott,

Iknow how hard this time is for you. I lost my precious daughter, Jennifer, to Cystic Fibrosis three years ago. She was twenty-eight years old and truly the light of my life. I was at work when her nurse called me and told we that her white count was up and they may have to move her to ICU...she was fine the night before. When I reached the hospital, they were getting ready to move her to ICU...as soon as they got her moved, her heart stopped and they could not get her back. She was just in the hospital for a routine "tune-up"!

I still have guilt feelings that I should have been at the hospital with her that night before and that day. I would have been had we known that she was that ill. We were planning to go on vacation after she was released from the hospital.

I know that we are not supposed to bury our children..that is not the way it supposed to be. But, I do know that God is always in control and He does what is best! I know that through His grace, Jennifer left this world to be with Him quickly and did not have to suffer or be afraid. I am so grateful for that...she had seen too many friends die from CF that had to fight for their breath. I will miss her forever and will always think that maybe I should have seen that she was more ill than I thought...that I should have been with her that last night. None of this can be changed...I just have to cherish all the precious memories that I have of her, be so thankful that she was a child of God and take comfort in the fact that I will see her again.

My thoughts and prayers are with you.

Debbie Nelson
dnmissujen@aol.com
www.cfandbc.blogspot.com

AMY said...

Joy, you all are continually in my prayers!! thank you for sharing your heart.
.

Kristin said...

This is not the same, probably not even similar but I this is my own experience with life sucking guilt.
(I was responding to someone's question about whether or not to seek EI services for their child)

Do it! I did not get Early Intervnetion for Lauren and it is the biggest regret of my life. I listen to everyone say "she's fine, she'll catch up" when every fiber of my being screamed "there is something wrong with this baby"

It is quite possible, maybe probable, that the road we are on right now would remain unchanged even if I had called EI. But one thing would have changed.

I would not be standing here today, looking at my 6 year old, wondering what would be different if I had just called EI. That's where the guilt comes in.

Joy, I'm sure you would tell me that I've done everything I should, listened to all the right people. I know that but I fall into the guilty trap all the time.

It can really suck the life out of you can't it? It builds a prison you can not escape from doesn't it.

Jan said...

I happened on your blog, after a sleepless night. I googled Lament for A Son, it led me here. I have read that book several times. It has helped me so much in my grief, after the death of my 31 year old son, last November. He left a wife and two young children. In reading your blog, I was touched by this post about guilt. I felt such an instant understanding of what you have felt."Guilt is a blood-sucking leech" describes it so well. In my anguish and despair I would try to express my guilt feelings to others, how I was overwhelmed by it. They would explain rationally that God would not want me to feel that way, that it was God's will that my son died, my faith should be strong enough to overcome the guilt and on and on. I finally tried not to express the guilt feelings I had to others. It was too much and too hard for loved ones to hear or understand. Nonetheless the guilt was and is still here. It sometimes has been so overwhelming that it is hard to breathe. (With time and the help of the Savior it has eased) My husband feels it also.
As I read your words, not knowing you, logically it seems you did all you could. You seem to be wonderful loving parents, who did absolutely nothing wrong. You were there for your daughter throughout her life, showering her with love. I guess others could look at my situation in a similar way. My son was undergoing stem cell treatment for testicular cancer. He had finished the grueling chemo treatment, he was very ill, in the hospital getting his stem cells back. His wife was home getting ready to come for her daily visit. I was home, my husband was on the way to a business appoiontment. Our son was all alone, when he quit breathing. We don't know how long before the nurse found him. His heart had stopped, they were able to start his heart back and keep him alive with a breathing tube. Three days later we had to let him go as there was no brain activity. My overwhelming guilt.... why as his Mother was I not there?? I could have been, I should have been. Why didn't I feel the prompting of the spirit telling me to go to the hospital that morning. Why did he have to spend those last precious moments all alone. Why, knowing how sick he was did I not arrange to have a family member with him at all times. I could easily have done that. I could have been there that morning. I spent afternoons and evenings with him, but that wasn't enough. He would tell me he didn't want or need someone with him all the time, that he wasn't comfortable with that. I feel to this day that deep down that is what he had wanted. I don't think I will ever forgive myself. When my father had heart surgery, as a family we made sure a someone was with him night and day while at the hospital. Why didn't I do that for my own son???? My husband also feels guilt. He said he had a thought that he should go to the hospital before his appointment that morning, but got busy with trivial things.
My son's wife has never felt guilt, she has felt sadness, grief, lonliness, but not guilt.
Does it come with being a parent?? Your blog was the first time I have heard someone else express the anguish as I feel it.

I am deeply grateful to our Savior, I know He is the only one who can really help us heal.

Isaiah 53: 4,5
He bears our griefs
and carries our sorrows;
by his wounds we are healed.

Your husband Scott (I assume he is your husband) responded so well, his words are profound, as yours are. Thank you for your wisdom and for letting me express my feelings on this Memorial day. One year ago we had a wonderful barbecue, swimming, laughter, games.. never imagining what the next year would bring.
May the Lord Bless You as you have blessed others with your words. Thank You.

Jan said...
This post has been removed by the author.
Owlhaven said...

Oh, I am so sorry....I know all about guilt tho perhaps not to that degree....

I love the Christ Rice song, "Come to Jesus"...

hugs

Mary

Tricia said...

I am sitting at my desk at work right now with tears running down my face as I read your comment as well as your husbands. I know the feeling of guilt and how it can suck the life right out of you. I remember the day I lost my daughter. My husand had called from work and asked if one of us could go pick up something and bring it to him. I was laying on the couch not feeling well and she just happen to be going somewhere at the time so I had her run the errand for me. It was on her way to my husband's job that she had a wreck. We both struggle with the guilt-why didn't I take it to him, he struggles with why didn't he come get the part he needed at work. It is so hard to lay that guilt aside and know that God had that say chosen before she was even born. No matter how we would have handled things that day, it was her time. I will pray for your strength, as I know the upcoming year anniversary will be a hard time for you.