Perspective

I've had a really rough time these past couple of weeks and spent most of Saturday morning at the hospital in severe pain. I came down with severe vertigo two weeks ago and due to the severe dizziness and nausea this has caused I've not been eating and drinking enough. This lack of intake plus the multiple surgeries I've had on both ureters (the tube that connects the kidney to the bladder) caused them to go into spasm which is like having a kidney stone only without the stone. It's difficult to treat and excrutiatingly painful. When I got to the hospital my b/p was 115/102 (normal is 110-140/60-90) and this, plus the CT scan, indicated the pain was from my kidneys. I was given large amounts of diuladid which is a heavy duty IV pain medicine and some anti-nausea meds called Zofran. After about three times the usual dose of diuladid, the pain was better. Since then the pain has slowly eased off.

I'm very grateful I had a good, understanding doctor. Lots of times when doctors see how much pain medication I take on a daily basis they get concerned about giving too much when in reality I would need much more than the normal dose because of being on cancer-level doses of pain meds. The CT scan showed the mass/tumor in my kidney hasn't grown significantly larger for which I am also thankful.

Anyway, the point of this blog posting is to tell you of a blog I've been reading called Confessions of a CF Husband that has really helped me to keep my physical problems in perspective. Please read it when you get a moment. It's a wonderful story of a young couple undergoing mind-boggling adversity yet throughout it all being in complete dependance on Christ, knowing He will be with them throughout all they are going through. It's a wonderful story of overcoming and makes me long for a fraction of the grace and faith Nate & Tricia have!

Sleeplessness and prayer

I've not been able to sleep the past two nights due to an excess of pain. I have chronic bursitis in both hips and since I lay on my side when sleeping, it's been a struggle to find a comfortable position. One thing I've found, though, is what a comfort and joy it is to be in prayer during these long, cold, dark nights. I feel such a sense of peace and rest when I am speaking to my Heavenly Father during these times!

I’ve taken scripture to heart and think of all the things He has blessed me (and those I love) with when I’m praying during these times. Then I try to focus on praying for the many who are suffering pain, ill health, sorrow and, in particular, those who are dying. It's amazing, first of all, how my perspective changes from "oh, poor me" to a much brighter, joyous, Christ-filled view. I’ve found this is one of the practical blessings we get from practicing the scripture that says, "Give thanks in all things"! Also, the time flies by when I’m focused on Christ and those who are going through various disciplines! J

To my shame, I haven’t been praying as much as I should have been these past few years. My eyes were on all the things I was struggling with instead of on my Lord. Yet spending these difficult, pain-filled yet oh, so blesséd nights in prayer has helped me understand the verse, “The joy of the Lord will be my strength”, practically! How wonderful our God is to help me to see this, in these particular circumstances.

One Big Happy-My all-time favorite cartoon

I really love this cartoon. It takes the saying “Kids say the darnedest things” to a new and funnier level. I like it, too, because the kids have such a lovely relationship with their grandparents. It’s not afraid to address more serious subjects, as well, such as 9/11/01. Anyway, thought I’d share some of my favorites.

Beautiful Scandalous Night

Another achingly beautiful song I love is this hymn. The juxtaposition of beauty and scandal is haunting and yet so heartrendingly true of our Lord Jesus' last night in Gethsemane and on His walk up that "Holy Mountain" to the cross. His Body became the “wonderful, tragic, mysterious tree” and out of His side flowed the fountain “For you and for me and for all”. By the glorious river that flowed from His side “our spirits (are) restored” and we are “forever washed white”.

Beautiful, Scandalous Night
by Smalltown Poets

Go on up to the mountain of mercy
To the crimson perpetual tide
Kneel down on the shore
Be thirsty no more
Go under and be purified

Follow Christ to the holy mountain
Sinner sorry and wrecked by the fall
Cleanse your heart and your soul
In the fountain that flowed
For you and for me and for all

CHORUS:
At the wonderful, tragic, mysterious tree
On that beautiful, scandalous night you and me
Were atoned by His blood and forever washed white
On that beautiful, scandalous night

On the hillside, you will be delivered
At the foot of the cross justified
And your spirit restored
By the river that poured
From our blessed Savior's side

CHORUS

Go on up to the mountain of mercy
To the crimson perpetual tide
Kneel down on the shore
Be thirsty no more
Go under and be purified

CHORUS

Blessed Be

I was listening to the radio a few days ago and heard a lovely song called, "Blessed Be" by Jason Gray. (I was listening to WBGL 91.7, Champaign, IL) The lyrics really cried out to me, especially with the current uncertainty and additional pain I've recently been going thru. Not only are the lyrics beautiful (the song is based on "the Beatitudes") but the tune is wonderful, too. Here are the lyrics:

Blessed Be
Jason Gray
All the Lovely Losers

Losers
All the lovely losers
Never thought you’d hear your name
Outside
Always on the outside
Empty at the wishing well
But time will tell

Chorus:
Blessed Be
The ones who know that they are weak
They shall see
The Kingdom come to the broken ones
Blessed be

Thirsty
Like you’re drinking from a salt sea
But one day you’ll be satisfied
Hungry
For the taste of mercy
Aching just to have your fill
One day you will

Chorus:
Not for the strong, the beautiful, the brave
Not for the ones who think they’ve got it made
It’s for the poor, the broken and the meek
It’s for the ones who look a lot like you and me

Chorus: (2x’s)

Blessed Be
Losers
All the lovely losers

Longings

I long to be a normal happy and productive Auntie who can spend all the time she and they want with her nieces and nephews and great-nephew. Yet pain is exhausting and I can’t seem to ever find the energy to do much more than get out of bed on most days. I miss the children; I long to be a part of their lives. I’m angry this stupid illness has destroyed so much of my life. I wish I wasn’t alone; that I had a husband to bear these burdens with, but God know this and perhaps some day it will happen for the right reasons and not just to give me someone to share my load.

I promise someday (soon, I hope) I will begin writing frequently of good and happy things, like my Great-Nephews baptism occurring today at 2pm. He’s such a lovely little boy and I find myself wanting so much to hold him now while he’s small coz if he grows much bigger I will no longer be able to hold him while I’m standing up. I remember with nephews and nieces walking with them and jiggling them as I walked would often times comfort them more than anything.

When Nils was 25 months old; we were grieving about the possible loss of his newborn sister Britta who was dangerously ill with RSV. I was called home from work one day to find my family devastated at the news that Britta’s chances at life were 50% or less. Mother was especially distressed having lost a child. Nils was sprawled out on the floor screaming with his mom’s purse in his hands, calling over and over, “Mutti, Mutti!” He'd not allowed anyone to pick him up to comfort him. It was a bit of a shock to see him so distraught since he’d been so good each of the previous four or five days his parents had gone up to the hospital and left him at Grandma’s. Mother said he’d caught sight of Petra’s (his mom’s) purse (she’d left it behind that day) and it just set him off. I picked him up and took him outside and walked down the road with him (jiggling him up and down) and he fell asleep immediately with one hand hanging onto Mutti’s purse and the other latched onto my shirt-collar; holding on for dear life, his dear life! Blessedly, within 24 hours we had the news Britta had made a miraculous turn around. It is her little one, my first great-nephew, whose baptism our family is celebrating today!

I miss, with an agony I can’t describe, being an important part of in the kids’ lives, even the older, married ones. It hurts me with a heart pain the younger children may never have the relationship the older kids did with their Auntie Debbie all because of a disease which has taken up so much of my life, physically, emotionally, and spiritually. I feel so guilty about this, as if I’d only tried harder I wouldn’t be as ill as I’ve been and I would be a part of my family’s life again. I know the Lord Jesus, as the Great Physician, can heal this part of my life as with all other parts, yet it’s hard not to grieve over what is already lost.

Count it all joy...

“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.” 1James 1:2-4 ESV

I’m struggling with “counting it all joy” these days, if I’m honest. I have once again been hospitalized for three days, weekend before last. It was the usual scenario where my family and I struggled to get the staff to realize something is truly wrong. I was in the kind of terrible pain I'd only experienced before when my ureter (the tube connecting the kidney to the bladder) was obstructed from endometriosis. And, belief me, it's a pain you never forget; the same as a kidney stone! The ER docs were kind, but a Turkish "hospitalist" came in to admit me to the hospital and his first words were, "There is no reason for your pain. In fact you should not be on any narcotics at all. I will take you off all of them and put you on Toradol (a drug similar in action to Advil, an anti-inflammatory given IV)”. Some of the medications he spoke of discontinuing were ones I’d been on for ten years because of severe chronic pain over my right kidney!

I very quickly told him I did not want him as my doctor. I told him despite multiple abnormalities which had been seen on two CT scans, he had come into my room already having decided there was nothing wrong with me. Mother went into "mother-mode" and said to this doctor, "Look, we've been dealing with Debbie's pain for twenty years now and almost every single time she’s come into the hospital you doctors disbelieve in her symptoms. Over and over we've gone through this and every single time Debbie has been shown to be seriously ill, usually with recurring endometriosis. We trust in what Debbie is saying." I was so touched by her fighting for me like that; it made me very proud to have her as my mom.

Thankfully, the pain resolved to a bearable level within about 48 hours. I was able to go home by late afternoon on Monday. Not before, however, a Doctor of Osteopath (whose bedside manner is blatantly spelled out in his name, which begins with Rud (pronounced rude)) had decided this earth-shattering pain I'd been suffering through was nothing more than a "spasm in my psoas muscle". Amazingly enough, this DO made the “psoas spasm” diagnosis despite two CT scans, an MRI and an Ultrasound showing the left kidney was hydronephrotic (which means it was bigger than it should be, as though something had been keeping the urine from empting from the kidney into the bladder. It also showed a narrowing of the ureter with dilatation above the narrowing, which would happen if there had been something pinching off the flow of the ureter, at least temporarily. Since this was exactly what had happened when my left ureter was obstructed by endometriosis ten and a half years ago, I wasn't surprised the pain was similar! They also found a mass on my right kidney. This they were concerned about and I was told to follow up with a specialist in a week or two.

I am praying hard, especially for peace about this, and doing my best to give these many worries over to my Loving Heavenly Father. I know all of this is in His tender care, but I find it hard to not be scared sometimes. When the pain starts heating up again and I’m trying hard not cry and praying hard for help to get through the worst of it, I can’t seem to stop this cycle of worries. I worry that local doctors won’t have the expertise to treat this (if it is endometriosis) because there are only ten cases of endometriosis of the kidney found world-wide in medical journals. Also, I hate the idea of having more surgery after having approximately twelve surgeries in the last twenty years. Please understand me; I don’t think I’m being faithless. I believe God deeply and intimately loves me and has only good in store for me. It’s just I’m so tired of having this awful pain day in and day out, and when the really agonizing pain occurs, I can hardly bear it.

All I can do is hold steadfast to the Truth of scripture exemplified by this verse, “Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him.” 1James 1:12 ESV Holding onto the Truth is never a bad thing.

Cry of My Heart

While a Pediatric Intensive Care (PICU) nurse for eleven years, I was especially drawn to abused children, even though their needs are usually difficult to meet. Often, holding them close to my heart comforted these children. By cuddling them, I attempted to show them the love of God, loving them as He loves. Through caring for these lovely, but broken, little ones I came to understand Christ’s call to “become as little children.”

Most of the time I felt I wasn't making any difference. We'd have kids come in having been battered in unimaginable ways, we'd patch them back up, then the Department of Children and Family Services (DCFS) would oftentimes send them back to the environment they came from (in an effort to "preserve the family" even though this was killing the kid). Sometimes I'd wonder what the point was to it all. (This came home to me dreadfully when I had a 3yo little boy who'd been beaten until he almost died by his mom. DCFS sent him to live with his maternal grandma “where he’ll be safe”. Unfortunately, his mother lived with the grandma! The grandma frequently came to visit this little guy and was sweet as honey when staff was in the room. Yet I’d caught her yelling at him more than once when she thought no one was around. He was in a PTSD state and would flinch and cringe when she approached him. I conveyed these concerns to DCFS but it didn’t matter. On discharge day he clung to me crying and had to be forcibly put in his grandma’s arms. It was heartbreaking!) Anyway, I grew terribly discouraged. In the past few years, though, I have come to understand that the love I gave, in all its simplicity, DID make a difference. Often, the love I had to give to abused children was more than they had experienced in their short, painful lives.

I’d like to tell the story of two children who changed my life forever, making me a better nurse and, more importantly, a better person. I’ll call them Hope and Grace, for that is what they taught me.

Hope was a two-year-old with a history of horrendous parental abuse, which led to removal from her mother’s home and placement in foster care with an aunt. One of her cousins was jealous of the attention Hope received, so he gave her a bottle filled with rubbing alcohol (she was somewhat developmentally delayed and still bottle-fed). When she gagged and wouldn’t drink it, he poured it down her throat. She arrived at our hospital in kidney failure and required multiple rounds of dialysis, as well as intubation and ventilation to manage her airway until she stabilized. After several days Hope was well enough to be transferred to the Intermediate Care Unit. It was my day to work in this unit and I was assigned to care for her.

When I walked into the room, I found her tied down by soft restraints, crying as if her heart would break. I removed the restraints but had to replace them immediately when she began screaming, pulling her hair and banging her head against the side-rail of the crib. When I changed her diaper I was horrified to find hideous burn scars on her bottom, where she’d obviously been placed in scalding hot water. When I gently lifted her gown to listen for bowel sounds, to my disgust I found multiple wounds from cigarettes being put out on her belly as well as other healed scars all over her torso.

I setup a tub of warm water to wash her since she’d only had sponge baths during her stay on the unit to this point. However, when I attempted to put Hope into the bathtub, she screamed at an inhuman pitch. The look of sheer terror on her face, as she pulled her legs up all the way to her chest, was heart-breaking. Since the burns on her perineum were old and well-healed, I had not expected her terrified reaction (although I should have). I put her down beside the tub and began to play in the water, splashing in it until she began to laugh, dimpling as she looked up into my face. She eventually wanted to join in the silliness and reached her hands in to splash me. I laughed back into her gamin face. Slowly and, oh so carefully, I was finally able to put her in the water to gently bathe her.

After her bath, I fixed her a bottle of formula and cuddled her in a rocking chair. I sang “Jesus Loves the Little Children” and “Jesus Loves Me” to her. As she went to sleep in my arms, tears slipped down my cheeks. I snuggled with her for a long time, weeping with sorrow for her suffering and with rage at a world that allows this to happen to “the least of these.”

Later, by God’s good grace, I realized the songs of love I sang that night brought as much comfort to me as they did to her. I believe I was able to show her that not everyone is bad and that it is safe to trust others, if only a little. Hope was transferred off the unit to the regular floor and was eventually discharged into another foster home. I never saw her again.

A few years later, little Grace came under my care. Grace was a twenty-month-old, blue-eyed beauty with curly brown hair and the lovely chubbiness of a well-fed and cared-for child. However, Grace’s mother (in one of the most frequent scenarios of child abuse) had met and fallen in love with a man who had no interest in Grace, except to make her life as hell-filled as possible. Since Grace was not his child, he decided that she didn’t deserve to live, except as a recipient of his sadistic tendencies. Grace’s mother valued her relationship with her boyfriend more than her relationship with her child and chose to ignore his horrifying, abusive behavior toward Grace.

One evening, Grace was left alone with the boyfriend for the night. Shortly thereafter, an ambulance was called and the baby was brought to the hospital with a severe head-injury. Upon arrival in the emergency room, she was thought to be brain dead. She was placed on a ventilator, while the doctors tried to convince the family that there was no hope. Finally, it was decided to do a perfusion study to determine whether her brain was receiving oxygen, and she was transferred to the PICU.

I requested to care for Grace but had no idea what I was getting myself into. The ER nurse gave me Grace’s horrifying medical history, which included the head injury, burns, broken bones, and bite marks. Then she quietly explained that the baby had been brutally sexually assaulted, as well. Because the baby was so desperately ill, I had a great deal of work to do, so, I tried to focus on the task at hand and not on the broken bit of humanity before me.

Once the scan was completed, the specialist decided to withdraw life support and let her die. Normally, the parents are a big part of this process, since it’s their last chance to say goodbye, but Grace’s mother was reluctant to watch her die. Eventually, she agreed to be in the room but stood three feet away from the foot of the crib. She repeated the same words over and over, “Is she dead yet?” She wouldn’t touch the baby, so I placed my hand under the sheet, stroking Grace’s leg, as she lay dying. Her mother left the room before Grace’s heart stopped beating, so I was able to pick her up in my arms and hold her until her life had ebbed away. Cuddling Grace, I whispered, “I love you and God loves you. You are precious and beautiful.”

As I held her, I felt the Lord’s presence in the room as she passed from my arms into the arms of her heavenly Father. I felt comforted knowing that she was now in the presence of an all-encompassing love and would never again experience suffering. I also felt the Lord’s nearness and love for me as I began one last act of love, preparing her poor, broken body for burial.

As I tried to sleep that night, I couldn’t get her beautiful burned face out of my mind. I was terrified of returning to work and that awful suffering. I sat in my car the next morning, afraid to go in and desperately praying that I would never again see such pain and suffering. I knew this wasn’t a rational fear. Child abuse usually doesn’t involve the utter destruction of a child’s body, thus the chances of my having to witness anything similar to Grace’s case was infinitesimally small.

However, rationality doesn’t always win. I felt terrified. This was the hardest thing I had ever experienced. I had never seen so many gruesome injuries concentrated on one small body. A week later, after going through this panic-filled prayer on a daily basis, I quit my job and my profession. I couldn’t face the fear and the helpless knowledge that nothing I could do would prevent another Grace.

After several months of menial jobs, I was able to talk to a friend, Melissa, about Grace. Until then, I couldn’t voice the horror I’d felt. Even though I relived it daily in my memories, I just couldn’t let it out. God, in His grace, gave me the courage to finally speak of it, and Melissa’s response comforted me. She believed that Grace would remember she was loved in the final moments of her life, and that Grace would recognize me in eternity. Melissa said, “She’ll come running up to you and lift her arms to be cuddled once again by the one who gave her love in the last moments of life.”

With these words, I began healing. In a few more months, I returned to nursing. Although I struggled for months, I sensed God’s presence. His love would not let me go. My nursing abilities are the greatest gifts God has given me. Through the Lord’s love and mercy, He has given me the grace and the strength to continue nursing, although in a different area.

Telling these stories is difficult; reading them must also be so. Although the extreme abuse I saw in Hope and Grace does not occur daily for a pediatric nurse, working with abuse victims is always emotionally draining. Most nurses are socialized to be clinical and emotionally detached. While some emotional distance is necessary to enable us to be objective, I believe that victims of abuse experience healing when we love them enough to allow ourselves to feel their suffering. This doesn’t mean taking on their suffering, because that is not what God would have us do, but we need to help lighten their load.

Holding and loving Hope and Grace made a difference in their lives. Had I not held them, the tragedy of their existence would have been compounded. While it caused me greater pain than I had ever experienced in my life and, indeed, almost cost me my profession, I am thankful that God gave me the strength and courage to do this work. How grateful I am to Him for making these children the cry of my heart.

Epilogue:

Since this story was published in the Journal of Christian Nursing, Fall 2002, I’ve again left the nursing profession, this time permanently, I think. I love kids and love pediatric nursing and long to be back in it, but just cannot meet the physical demands of the job due to the terrible pain I have each day. Perhaps someday the Lord will bring in healing and I will be able to return to this important and well-loved work that has been my life.