It was always there. Getting groceries, watching a gorgeous sunset, chatting at the table with family or on quiet moonlit walks: the darkness.
A few years ago I stared at the super-sized bottle of Tylenol on my counter and wondered if its promise of “Pain-Relief” would work for me. It wasn’t the pain of a migraine or an aching back that I wanted to disappear, it was the burn of searing loss that cut deep into my soul. The kind of pain that fills your dinner plate with tears, sends sleep packing and makes you wonder if you’ll ever feel anything but that searing sensation. I thought it would never leave, sure it would suck me down, chew me up and spit me back out–a cynical, bitter, joyless me.
It started six years ago when my son was born with a neurological malformation from a virus I had while pregnant. It sounds so compartmentalized on paper; in real life, it’s not. Each time I’d see a scan of his brain damage, the guilt made me nauseous. Every time his blind eyes would search for me it taunted me, he had never asked for this. I was supposed to protect him. I didn’t.
Doctors will tell you it’s not your fault. But the darkness whispers that it is. It replays the “If Only You Had…” clip every time you hear the suction machine emptying his lungs or watch his body struggle with spastic quadriplegic cerebral palsy. And when you find yourself meeting with the palliative care doctor instead of a preschool teacher, you almost lose yourself to the darkness.
Melancholy never came naturally, I was always a glass-half-full kinda gal. But I couldn’t run fast or hard enough from this anguish. At 32, I was wishing for life to be over. Even the pills doctors prescribe couldn’t fix it. I made my sisters promise that they’d take care of my kids if I couldn’t. My husband wondered if he was going to get his wife back.
Still, I wanted to fight. I was not going down easy. I have a wonderful husband and five children who move my soul every day; I wanted to be with them. It was standing at the kitchen sink that I discovered my secret weapon for the ever present despair: light. I would fight the darkness with light–I would overwhelm the sadness with the goodness and joy that follows me every day of my life.
When alarm bells rang in the night from my son’s machines, I’d run my hand through his thick hair and give thanks for the beauty of his life. My daughter’s hand would wrap his tightly in their sleep; I’d stop to wonder and give thanks that so much love could exist in so much loss. When his eyes searched for me I’d notice the warmth of his smile and his gorgeous long lashes. When his body stiffly jerked in excitement, I’d lean down so he could place his open-mouthed kiss on my cheek. When he squealed in delight I’d give thanks that there was a vibrant little boy in there, wanting to be heard.
This is the battle of light pushing back the darkness. The darkness is thick but when you turn just a few degrees, there is so much light. Your eyes no longer become accustomed to the darkness, instead they focus on the light of joy and goodness spilling everywhere. No longer do I squint at the brightness; my eyes are wide open and the warmth of that light has seeped into the very spaces of that searing loss. The cracks fill up with joy and healing, even though the scars remain.
The reality is what it is. My son’s days will come to an end sooner than later. And no matter how much I wish I hadn’t even gotten a virus, I did. The darkness has had its victory, but not the final say. I will spend every day thanking God for the gift of Calvin’s life. My family will rejoice that we get to discover beauty and meaning in places few have ventured.
The darkness is just a few turns away but I’m not going back. There’s way too much here.
Deer in the headlights. Blindsided. Shocked. Suffocating pain. It’s what comes to mind when I think back to the early years of dealing with my son’s losses.
Six years ago I wandered about in a numb state, unable to wrap my head around the fact that my son had extensive brain damage and would never recover. I got up, faced the days and even attempted normal conversation but inside I wished life would end.
Today I’m better in a lot of simple ways, like wanting to get out of bed in the morning. Or sitting at the dinner table without crying. Guilt no longer haunts every waking moment and flashbacks have nearly disappeared.
My lips have remembered how to shape hearty laughter again. And often.
However, in many ways I will never be “okay” again. I’m forever altered, and I have a feeling that might be just the way God wants me to be.
This brokenness can propel us to experience the fullness of Christ more fully.
In the end it doesn’t matter how broken I am because Christ is my restoration, and I am whole in him. The days in this house may be dark with the deterioration, but the light of Christ infiltrates every moment with hope and promise.
As my son’s body deteriorates, I will rejoice that because of Christ’s resurrection, Calvin will be resurrected with a soul and body that only knows completeness and fullness.
When defeat seems to win the day with seizures, respiratory infections and damaged lungs, I will give thanks that spiritual gifts are not limited to healthy bodies and healthy minds.
When I complain and wish for a “normal” (at least a less exhausting!) life I will remind myself that this is the life Christ has called me to. This very situation in which he is eager to display his grace. I will look for that grace and not my own strength.
When Calvin struggles to breathe and I’m tempted to think God’s love is all dried up, I will sing Psalm 136 into the darkness. We will chase back the shadows with the true and living Word of God.
I will rejoice this Christmas that Jesus suffered more brokenness of soul than I will ever encounter. He suffered my brokenness. And because of that he groans in spirit for the heaviness of our suffering.
I’m no longer wishing my life would go back to “normal”. I’m not even wishing for the less-scarred, “happier” me.
Instead, I’ll pray he takes this forever-altered, broken me to show his surpassing power and grace.
For God, who said, “Let light shine out of darkness,” has shone in our hearts to give the light of the knowledge of the glory of God in the face of Jesus Christ.But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us.We are afflicted in every way, but not crushed; perplexed, but not driven to despair;persecuted, but not forsaken; struck down, but not destroyed. 2 Corinthians 4:6, 7)
It’d been a long day at the wood-shop–Darryl came in dusty, hat tossed on the back of his head.
For me it’d been a long day on the home front–three different phone calls to the neurologist, medication adjustments plus the usual activity of five kids in one house.
“What do think about the seizures?” I asked Darryl for his opinion. He shrugged and turned his attention to the pile of mail.
“Am I making the right call? Should we take him in for another EEG?” I asked, looking for that second opinion. “If you think that’s a good idea, let’s go for it,” he replied.
I used to become frustrated with a conversation like this–they always made me feel like I was carrying the weight of Calvin’s care by myself. And from what I’ve heard from other moms, I wasn’t the only one.
Valuing Each Other’s Roles
Typically the mom is the one that goes into overdrive as soon a diagnosis is given or problem is presented. We research as if our life depended on it (sometimes it does!!), find support groups, grill specialists, and watch our kid with razor sharp eyes marking every suspecting symptom. Am I right?
We become THE expert on our kid.
And often we are frustrated if our husband does not share this same passion for solving all the problems! Maybe we even interpret it as a lack of care or love–and let them know that. We can let our assumptions drive our relationship down.
In the early years of living with disability, Darryl and I had resentment building up in our relationship over the frustrations of care-giving. It took hard and humble work to break the resentment and replace it with understanding. How?
True partnering in care-giving starts with identifying and valuing each other’s roles in care-giving. Talk together with your partner and divide up responsibilities based on time and gifting. Of course they overlap, but we have very different strengths which make for a great team when combined.
I’m better at knowing what to ask the specialists and managing medication changes. Darryl is better at doing 24-hour EEGs with Calvin and taking care of him through the night.
I’m better at implementing his strict lung treatments, Darryl is better at comforting Calvin when he is having a hard time breathing. I am better at keeping track of the logistics of Calvin’s life, Darryl is better at holding me up when I start to fall apart.
Over the years we’ve learned to value the other’s strengths; it’s taken down the walls of resentment and replaced it with respect.
Don’t Devalue Dad (or Mom)
In the special needs world there are many “tiger moms”. I think we can be our own worst enemy by unintentionally taking over the entire role of care-giving for our kid. Many men have said they feel pushed out, not needed or simply viewed as incompetent by their wives. As a result their participation drops and the mom ends up carrying the weight herself.
The lesson here is that we need each other and we need to communicate that value clearly. As any single parent of a disable child would tell you, it’s overwhelming to do it alone. If you have the privilege of having a partner, talk to him (or her) today. Identify your strengths and talk about how to optimize every day by focusing on your roles.
Pray together, be in the Word together, pray for each other. There is nothing better for a family than to have a solid team (dad and mom) leading them! There is nothing more exhausting and defeating to have a broken team leading the family in different directions.
Encourage Each Other
It doesn’t have to be grand; it’s the constant little kindnesses that can transform our relationships. Here’s some to try:
“Thanks for taking care of that phone call, it means a lot to me.”
“Can I make you a cup of tea?”
“What can I do to make your day better?”
“I think you really have a lot to offer with this…”
“Can you help me think this through?”
“Thank you for never complaining about doing…”
“I love the way you love our kid.”
“Thanks for taking care of us.”
God didn’t intend marriage to be a sore, painful experience in our lives. He gave us to each other as a gift. You’re not alone if you no longer can see the gift in your spouse, but you have every reason to believe that can be restored. Let’s talk openly (maybe I should say, listen openly?) to each other, seek the Lord together, and learn to partner with joy in the specific calling God has given you.
Sounds weird, right? We usually associate stewardship with what we have, not the lack of it. What if we have poverty? Whatever situation we are in, there is a way to respond to it and use (steward) it.
It’s hard to talk about poverty when the talk is always about moving up, not down. It’s not trendy to be strapped. But for a growing number of families, it’s an increasing reality.
A lot of people may consider their money situation to be “tight”, but it’s obvious poverty and wealth are on a huge continuum. What some consider a “barely livable income” others would consider a good living. Many people in the world are living in extreme poverty, happy to just have food for the day. But this does not lessen the reality of those struggling even in developed countries.
For the sake of this discussion, I’m referring to American poverty; when one is below the poverty line and struggles to put food on the table, literally. Poverty is not sacrificing a week vacation because your budget just doesn’t cut it that month.
I’ve met a growing number of families that fit this description. We’ve learned it ourselves–we’ve had the craziest, most perplexing five years and are struggling more in our thirties than we did in our twenties.
It happens to be at a time when most of our friends have achieved stability at the least and great wealth at the most. It happens to be when stability is craved by us because our lives have been dumped upside down by circumstances outside of our control.
Poverty can be wearisome and stressful. Not to mention frustrating. It’s also a minefield of temptations.
For those of you in this minefield, I wonder if you would identify with the same traps I’ve found:
Shame. Especially in modern day prosperous Christian churches. There are many successful people in the church doing wonderful things and you are not one of them. You’re not able to give as much. You’re necessarily consumed with working another late night in the week, missing fellowship and worship. Because there are bills still hanging in the “to be paid” pile. Maybe it’s implied from those not financially struggling that you are either lazy or foolish, and that is why you suffer. There are cases that’s true but many times not–although sometimes you might believe it yourself. You feel a sense of shame or confusion–after all God owns all the wealth in the world and yet, it’s not being given to you. Somehow you are less trustworthy or able to manage such a gift.
Envy. You watch people accumulating wealth, adding to their 401k, planning vacations, or moving to bigger and better houses. You have not been given much in material possessions. You find yourself arguing that you have a greater need for x, y, z than they do. You find it hard to watch others go on vacations and feel like a let-down of a parent when you tell your kids they can’t do what other kids can do.
Ease. Studies show that money does bring a better quality of life and happiness up to a point. It’s hard to recognize this when you have enough, the ease is just part of everyday living and comfort. You only realize the ease (and comfort) it brings to life when you don’t have it. And seeing other people’s lack of stress about meeting the monthly bills can stir our appetites for ease. “Why does life have to be difficult?” (Interestingly, Jesus never talk about pursuing ease. He does talk a whole lot about cross-bearing though.)
Resentment. Why does God…? Why do they…? It pops up when you tour your friend’s new house or your car sits at the repair shop…again. This attitude is the age old trap Satan uses. We end up victimizing ourselves which leads to bitterness. It destroys us from within and it destroys relationships. Fight resentment by giving thanks to God for your friends blessings. Confess your resentment to God. Jesus gave his life for the resentful, ask Him to give you a servant heart.
How can you navigate through this minefield? Is it even possible? Yes! Christ has given us the power of His Spirit to overcome them, no longer should sin have dominion over us (Romans 6!).
Submit. If your poverty is not due to laziness or foolishness, realize this is not God’s punishment. This uncomfortable (often painful) place is where He has you for good reason. And while you should continue to work to secure your finances, give this situation to God. Submit it to Him and ask him to dwell with you in it. Ask Him to work His glory and wisdom in you and your situation. You don’t have to like your situation to surrender it to the Lord.
Live by the riches of Christ. Paul says the riches of Christ are “unfathomable.” We can easily fathom an extra thousand dollars or a nicely stocked 401k. But nobody can fathom the richness of Christ–which is yours if you are united to Him! You are rich, my friend. If that doesn’t feel like any consolation then we need to get back in the word and ask Him to show us what it means to “delight in Him.” Write out John 1:12; John 11:25, 26; Romans 8:29, 30 and any other verses where you discover the riches that are yours in Christ.
Find joy in each day. When your feet hit the floor in the morning, give thanks! You’ve been given a new day, a day in which Christ wants to reveal more of Himself to you. A day He wants to delight you in His riches (and no, usually those are not monetary!). Don’t let fear of the future squelch your joy of God’s provision for this day. Your kids will model this; if we live joyfully they will too! Conversely, if we openly display bitterness about our lives, they will too.
Serve others. Focus on your standing in Christ. This is your identity and this is how we should relate to one another, not an identity based on who has what. For those in the household of faith, we are brothers and sisters in Christ. Seek to serve; you may not have money but I have no doubt God has given you great gifts. Maybe you haven’t even discovered them, get serving and you will find them. Gratitude and joy will be a surprising fruit of serving. Serving others also kills envy. Get your kids together and do a service project. They’ll forget their pity-party about not going on that great trip and will create lasting impressions of what it means to serve.
Give thanks. It is the divine antidote to a complaining spirit–powerful and quick to give us a real perspective. This doesn’t mean you ignore or deny the reality of the difficult situation, but rather focus on the beauty and goodness that is also present. Take a walk and admire the beauty, breathe deeply and thank God for your body, your mind, your soul. Cherish the family and friends that surround you. Give thanks for the church of God. Start a gratitude journal and suddenly you’ll see blessings everywhere!
Eternity. Don’t despair even if you never have a dime in this life. Yes, it’s hard but in the end we “count all things loss” except for the riches of Christ Jesus. Seek first the kingdom of God–that’s what’s lasting and it’s already started here. As you lay out all the bills on the table remember your greatest debt has been paid, at the expense of Jesus’ blood, and it’s final. No matter how financially “ruined” you may be, if you are in Christ you will never be spiritually ruined.
Know that you are not alone–not only are others in your shoes but even better, God has not forsaken you. Don’t believe that He is ambivalent to your needs, He knows and cares. Trust His wisdom to give you exactly what you need in order to make you more like Christ Jesus. Even if that means eating lots of rice and beans for now.
It was so definitive, those conclusive words of the neurologist: “He will never walk or talk. In many ways he is incompatible with life.” Calvin was less than one and I was more than hopeful.
I would sit up late at night reading stories of kids pushing far past their prognosis, astounding doctors with abilities they never thought possible. I looked down every avenue that offered hope. Inspirational video clips fed me the possibility of miraculous outcomes no matter how dismal the beginning.
The stories were true. But it hasn’t been my kid’s story. In most ways, his reality matches the prognosis; he isn’t beating the odds.
I prayed for a miracle and fully believed God could do it. Some evenings I’d watch the stairs and half expect Calvin to peek his head around the corner. Or as he woke slowly in the morning I’d wait for his little hands to reach up and scratch his head or reach out and hug me. They never have.
It’s painful to realize that not every situation is one that God gives a miraculous deliverance to show his presence and power. We tend to remember the amazing displays of God’s power in history: Elijah’s showdown on Mt. Carmel (1 Kings 18), Naaman’s leprosy healed (2 Kings 5), or Jonah’s radical rescue (Jonah 2).
We like to remember the stories where men beat the odds. We like trophy stories, ones that showcase deliverance and give testimony of God’s power. We’d be lying to say we didn’t want to see this in our kid’s lives too.
But the testimonies of those who did not experience miraculous healing and power are just as important. Perhaps they show the alacrity of faith and God’s sustaining power even more; His “power is made perfect in weakness” (2 Cor. 12:9). We imagine the rush of triumph from the deliverance of circumstances but God often makes faith triumph through the fire of trial.
Think of Job, Paul’s thorn, the apostle John’s banishment, or Stephen’s stoning. God worked treasure through struggle and soul-refining rather than through remarkable deliverance.
You may not experience the joy of watching your child beat the odds. But take heart–the power of Christ is just as present. Not only will he sustain you, he has already accomplished complete deliverance and gained an eternal triumph.
Jesus Christ, the very son of God, subjected himself to death on the cross. He allowed the nails to pierce his hands and endured spiritual and physical agony so we could be free from the bondage of sin and death.
This is the ultimate story of deliverance. This is the story that he weaves into our brokenness. This is the story that whispers hope into our homes with kids who are not “beating the odds” and being featured on inspirational news clips.
It is morning and Calvin is coughing–his lungs are full after a night of sleep. Deliverance hasn’t come from our circumstances. But God doesn’t need Calvin to beat the odds in order to prove his goodness, faithfulness, power and salvation. Our weakness is precisely what he is using to show his power and presence.
What happens when the dreams are lean? The kids don’t care–they ran like crazy on the front lawn, laughing and piling on the lawn scattered with white puffs. The cotton is crazy this spring, filling the air with white, sticking to our shoes, lighting the lawn. They miss the worry and rejoice in the present, the one year old right there in the middle of it with one pig-tail and two chubby legs. Delirious happiness.
I waved from the window, then turned from commotion to the stillness–Calvin laid on the couch as my hands began cleaning toys and books, posting reading logs, drawing meds, and cleaning up dinner.
I used to dream about the fatness, the fullness, that life held. The funny thing is, it always was about my comforts–getting ahead and all that. God’s had other plans, better plans. He’s given lean times.
“Some people just get kicked through life,” my sister said ruefully. We were sitting on my front stairs and I could no longer tell if my tears were from crying or laughing. (Sisters are certainly one of the best forms of therapy anybody could ask for, right?)
There are people who always seem to land on their feet and then there’s those that feel like they are dropped on the backside by circumstances and left to skid along.
Have you been there? Maybe your life feels like it’s playing to the soundtrack of “It’s a Hard-Knock Life”. How do we respond as believers?
I’ve come to realize God cares less about my comfort than He does about my sanctification. And no surprise, it’s often painful and not comfortable in the least. But in the lean times, He gives Himself. There is no better place to realize He is enough than when we are empty-handed. He withholds things that seem necessary with one hand, but the other hand draws us near to Him and pours out peace, joy, contentment, and fellowship with Him.
When we have nothing to cling to here on earth we are all the more free to cling to Him. Even in the “mundane” crosses–financial hardship, job loss, chronic health issues, or relationship struggles, He calls us to “learn of Him” (Matt 11:29).
How can we “learn of Him” in lean times–times that stretch us emotionally, financially, spiritually, mentally?
Consider Christ. Look beyond the difficult circumstances and see Christ. If you have little and struggle to pay bills, think of Christ who left the riches of fellowship and comforts of heaven so we could gain eternal, abounding treasure in Him. If we have Christ, we have all. Our struggle is used to ready us for His fullness.
Is your reputation of little value? Think of Christ who left the throngs of angels worshiping in heaven to fellowship with the poor, despised and those of “little value”. You are everything to Him and so He should be to you.
Are you facing chronic health problems? Do not lose heart, your body may waste away but He is renewing you, molding you, preparing you perfectly each and every day. (2 Cor. 2:16) Christ desires you to be with Him and is carefully getting you ready, with painstaking love, even when His hand feels heavy or cold.
Trust. When trouble comes in waves we’re tempted to anger or defeat. It can sound like: “Isn’t this enough?”, “Is God against me?” or, “I don’t even see the use of praying anymore.” These are insidious forms of doubt and unbelief; I’ve seen them crop up far too many times in my heart. We need soul therapy (prayer, reading the Word, communion) so that our posture to that new wave of trouble is one of trust. Trusting the love of God expressed in Christ to me, surrendering my hopes and comforts for a deep reliance on Him.
Obey. When defeatism is at the door the Holy Spirit can blow fresh winds of holy resilience into our souls. I’ve found this always happens as we take steps forward of obedience. This means refuting the lies of unbelief, confessing our sin, renewing our trust in Christ and committing ourselves to prayer and the study of His word. If you don’t even know how to start walking in obedience, take out a hymn or psalm. When we lift our voices in worship to God the Spirit quickens our heart and sheds light on our path.
Do not be deterred by adversity, there is gold waiting to be discovered beyond the pain as we “learn of Him.”
I’m feeling a little isolated from the rest of the world, inside my four walls and busy repeating the same tasks over and over. It’s tempting to be discontent, to feel like life is passing by. But I know that’s not true, this is a full life given to me. Full of joy and meaning, and yes, sometimes hidden under the guise of “mundane”.
Easter holds so much hope for those battling illnesses and suffering in weary bodies, and for those of us caring for them.
To be honest, I’m weary. Not of caring for him, but at the futility of the battle. The other day I pulled up with a van of groceries and hesitated before opening the front door. I’m so sick of suctioning, I thought.Tired of emptying lungs that keep filling up.
It’s draining to watch Calvin struggle bravely. It takes hours to get him ready for school, for church, anywhere. Sometimes he does great–he’ll be alert, breathing easily, and thoroughly enjoying life. This is when people outside our four walls see him and think he’s doing great. But it’s only half the story, his strength fades quickly and Darryl and I are often rummaging quickly for meds, another respiratory treatment, more suctioning.
The back to back infections of late sap him of strength. And some days I pile the blankets on his belly so I don’t have to see him struggling to breathe.
Today we’d planned to take him to church for Easter. His lungs had other plans. He’s in bed after battling seizures, fevers, and thick secretions in his lungs.
And today, in the middle of rescue meds, catheters, a thermometer, and hugs, Easter has never meant more.
I see illness and weariness but it’s only the immediate picture. There is an eternal day dawning, a day made possible because of our mighty Savior. And this reality gives us strength to put one foot in front of the other, joyfully!
Jesus, our Shepherd, the one who carries us in this battle, has risen–hallelujah!
He conquered the grave so that we would not be defeated by it.
He took the sting of death so we could experience hope and tenderness in our dying.
He fully paid for our sins so that we can have life.
He experienced the weariness of struggle so that He could be an eternal strength and surety for us.
He is risen, He is coming again. Come, Lord Jesus, come quickly. The song of victory has begun.
Honestly, they are the cutest little sticks for legs you’ve ever seen.
They were laid flat on the steel bed beneath the X-ray machine. Calvin was shivering a bit with only undies to keep him warm. His eyes were wide, listening to the sounds, trying to figure out just what was happening. It always makes me grin to see him that way. So trusting, so alive, so connected.
His legs. They have no muscle, and the result is two straight little sticks. Adorable, generously-covered-with-peach-fuzz sticks.
They should be plump with muscle and carrying him from puddle to puddle pooling on our sidewalks. But they are still and thin.
This beauty lies quietly in front of me and part of me that wants to stand in a posture of defiance at heaven. His spine is curving severely and his hips and arms are sliding out of joint, even after hours of therapy, proper positioning and expensive equipment. Hasn’t he had enough? Really, he’s only five! Why does he have to reckon with the force of a fallen world while other kids jump puddles?
I’m like Eve, back in the garden–questioning God’s goodness, his intent towards us. And even while I’m reaching out in unbelief God calls me back to put my eyes on Jesus in faith. To not believe the lie that He’s pushing us lower to destroy us, but rather to give us life. His Spirit, renewing us day by day, is just as real as the body wasting away in front of me.
This is not only a story of decay and death, it is also story of refinement and glory. And so is your story, if you are in Christ, no matter the present pain.
“And we all, with unveiled face, beholding the glory of the Lord,are being transformed into the same image from one degree of glory to another.” 2 Corinthians 3:18
It means glory here, now in the questions, pain, and perplexing situations. Fixing our eyes on Christ, while our hopes for this life and even our bodies diminish, transforms us to his likeness, to be like Jesus. And instead of life wasting away, we are being built up and changed from one degree of glory to another. Really changing, living, transforming, thriving by his power in the midst of broken bodies and minds.
He is awakening us from the lull of sameness and illusions of stability, to Himself, to new visions of glory–in the X-ray room with two little sticks for legs.
It’s a parent’s worst nightmare, the PICU, Pediatric Intensive Care Unit. I found it strangely quiet and peaceful in spite of the obvious sobriety of the floor. If you glanced through the glass doors you’d find small bodies lying motionless on beds with parents standing by with wads of tissues. Some talking quietly on their cellphones, others motionless with their head in their hands. There are no reassuring smiles from the kids, just beeping machines, numbers flashing and still hands.
Amidst this surreal scene gowned figures can be spotted everywhere. Intent, watching each number, giving medications, and immediately at the bedside for any and every need. And then talking to parents. A lot of talking to parents, with their sympathetic hearts and caring, compassionate and professional conversations trying to comfort the aching questions and fears hanging in the room.
I’d heard it was a high burnout rate, working as a nurse in the PICU. Not only because your skills need to be at the top of the game, but sometimes the emotional wear took it’s toll. Fighting for a child for months and then having them succumb often made them feel defeated and helpless. Some diseases and accidents take the bravest, the sweetest, the ones hard fought for. And it’s not only the parents who mourn.
We spent months in the PICU, in and out with constant battling for Calvin’s life. Spending hundreds of hours with nurses made them feel like family. They saw us agonize over decisions, witnessed the beauty of Calvin’s life, and cared. Really cared. I can still name each one of them and they come up in conversation. They have left an indelible imprint on our lives.
Darryl and I ran into one of “our” nurses, Nikki, a few weeks ago. One year she taught me how to use a feeding tube and then a year or two later back in the PICU, how to care for a tracheotomy. And it wasn’t a removed, cold lesson. It was taught with great dignity and compassion on my kid, tenderly moving his head, giving him warming blankets and gently guiding my hands as tears filled my eyes. When I saw her it was like seeing a long lost family member. We hugged and she exploded in delight with me over Calvin’s recent pictures.
A few months ago my sister ended up in the PICU with her son. The hospital was overflowing and the PICU was being used as overflow. She called me, “Hey, didn’t you have a nurse named Dana? She’s Quinn’s nurse and she is so familiar to me.” Dana, yes! She had been with us through countless days and nights and we’d shared stories, investing in each other’s lives. She referred to her patients as “her kids”. “Ask her if she remembers Calvin,” I said, thinking she probably wouldn’t with the amount of kids she cared for. Dana remembered him without hesitation.
That’s what makes the PICU nurses unique. Heroes? I think so. Not only doing their job of caring for kids in serious crisis but caring for the family that comes along with the child. It can’t be easy. Hurting parents, grief and worry, and a sick child all in one room. And then moving on the next patient after the bed becomes empty. On a good occasion, due to a child moved to a less intensive floor but many times, emptied as another child’s body was brought to the holding place for the funeral home.
Last week Carly called me again, “Kara, I think Dana’s been in an accident. It looks like her.” She forwarded the link to me and my stomach dropped, it was Dana. She’d been on her way to the Children’s Hospital and had a terrible accident. She succumbed to her injuries last weekend. She was only 27. Dana.
Her carepage was flooded with support. One was a parent that had a little girl die in the PICU last week. Dana had carried their daughter to the holding place. Giving care, compassion, and yet another piece of herself to one more child. One more family.
Today I’m thankful for the gifts of God’s goodness that he sends in the packages of people like Dana, David, Nikki, Leslie, Bennett, Stan, Jimbo and so many others that fill the PICU with skill and compassion.
Dana’s life was filled with being a nurse, but she was so much more than a nurse. She was a loving, caring, believing heart that put on her nursing skills to give grace and compassion to hurting places and hurting people. And that lives on the hearts of parents and in the lives of the kids greeting the dawn of this day.