Category Archives: grieving

Misty, The Girl I Never Met: Never Judge a Book by Its Cover or a Person by Their Abilities

special needs children need special love
Gabriel Max (Artist)

Her name was Misty. It was printed in chalk on the nurses’ station board along with a list of other first names. We would never actually meet, but I caught a glimpse of her one day as I walked passed her room. The mental picture I’d developed before that sighting was of course all wrong.

Just days into our month long stay in the Pediatric Intensive Care Unit, we met Misty’s family: aunts, an uncle, a grandmother, father and cousins. Now, almost nineteen years later, I’ve lost count, but there were enough of them to fill the room around us. Doubtful our paths would have ever crossed if not for the circumstances that forced us all into that tiny waiting room.


Naive, overwhelmed newbies we were, but Misty’s family were well-seasoned veterans in this system of corridors, white coats and ever-changingprognoses. They took to us and us to them in a fast friendship that felt like it would last a lifetime.

In bits and pieces, through conversations and encounters over the next weeks, Misty’s life story unfolded. Born to young, unwed parents, her mother died sometime before the baby would finish toddlerhood. Knowing she would never see her daughter grow up, Misty’s mother had one dying wish; she made her sister swear to raise the child as her own. That little sister bore that promise with unswerving faithfulness and along with the rest of the extended family she committed the next fourteen years to caring for her sister’s only offspring.
Sometime after losing the mother, it became apparent that Misty suffered from serious medical conditions which were the result of an under-developed brain. Her life would include many PICU stays and she would never know the freedom of spinning to “Ring Around the Rosie” or the joy of singing her ABCs. By the time we met her family, she was relegated to a bed, unable to speak or provide her own basic needs.
Surely some outsiders questioned her “quality of life”. To a culture that equates physical fitness and mental capacity with the measure of a person’s worth, Misty might have appeared a hopeless case.
Her family knew her better.
She loved it when her aunts and grandma fed her, they proudly boasted. At mealtimes, she rewarded them with smiles and eyes that spoke the words her mouth could not. And though the doctors and nurses insisted she was forever silent, Misty cooed for those who loved her. Rather than flowers and teddy bears, family members shopped for new, lace-trimmed nightgowns to make her not infrequent hospital trips more pleasant. Every day it was someone’s job to brush out her long, flowing hair and wash her pretty face. True to her promise, Misty’s aunt insured that someone always remained nearby.
Words like burden, trouble, or unwanted never entered our conversations.
As though it were yesterday, I recall the upset in their voices on the day they discussed the doctor’s recommendation for a feeding tube. Considering the infrequency with which doctors actually bothered to speak directly to family members, I assume the news was delivered via the shift nurse. The tube was being ordered to better facilitate her nutritional needs. On a floor full of kids dependent on breathing tubes, drainage tubes and electronic monitors, a feeding tube was the next logical step. But to Misty’s family, that step was leading in the wrong direction.
To the doctor, who probably spent five minutes reading her chart, this fourteen year old was a case study in medical interventions. To the busy nurse, Misty was another terminal patient with machines to monitor, levels to record and notes to take. The act of feeding her was just another necessary procedure to follow, but to her aunts and grandmother meals were so much more.
At the time I thought I understood their desire to retain this autonomy for Misty, the ability to taste flavors and feel textures across her tongue. But now that I’ve experienced the excitement of spooning first bites into my own little ones’ open mouths, I can relate all the more to their desperate attempts to protect her mealtimes. Three times a day, Misty’s family had the privilege to lovingly nourish her with food and she had the opportunity to feed their hopes and dreams. With my own not-yet-verbal children, I have to watch for their bodily cues to tell me if the food I offer is pleasing to their palate and when they’ve reached their fill. Feeding a child means moving in close, making eye contact and connecting (physically and mentally).
A feeding tube meant more than simply relinquishing a chore, it meant stripping Misty of one more “normal” function. When you expect your child to grow-up, to advance through life’s milestones, it’s easy to take such little tasks for granted, but Misty’s family didn’t have that luxury.
On that day, walking passed her room, I peered in expecting to see the girl my mind had formed. Instead, the young girl of about fourteen appeared so tiny and fragile in her hospital bed. Her legs barely reaching beyond the midway point, she was no longer than a child of five or six. And that long hair flowed nearly the full length of her stunted body it seemed. I was startled by the reality.
The image I’d created was based on my idea of “normal” because that’s how Misty’s family portrayed her. The obvious love they had for her communicated a different picture, while my eyes sized her with a worldly measure. No one ever knew my surprise and for that I am glad because I am ashamed of it. My false vision betrayed my ignorance and bias.
Those few weeks, nearly two decades ago, changed my life. I lost touch with her family, so I never did learn whether or not they managed to protect her from the feeding tube directive, but I’ve never taken for granted the real importance of “feeding” my children.
Misty was truly everything that her family saw her to be. Beautiful. Worthy. Special. Perfect. And in my mind, she will forever remain larger than life not because of her stature, but because she personified Christ (the hungry Christ, the naked Christ, the imprisoned Christ) to those who took the time to see.

Jesus, Jesus, Jesus in the Morning

Shower taken, clothes on, hair coiffed, make-up applied and breakfast gobbled, I was sounding the five minute alarm in an attempt to move my crew toward the waiting van when that familiar “Bzerrrt” rang out. Like one of Pavlov’s dogs, I stopped and reached for my cell phone.
She’s not doing well,” the text began. An old, dear friend recently contacted me after his mother suffered debilitating strokes. It had been years since our last meeting, but time melted away when I heard his voice. The night before, I’d sent him a check-in message to inquire about her progress, but this text deflated my hopefulness.
No time to sit and respond, the children and I climbed aboard and sped (no more than 6 miles over the limit cuz there’s no way I’m getting another ticket in my big pro-life stickered, family van) to the First Friday Children’s Holy Hour. Thankfully we arrived with some minutes to spare, so I joined the mama circle of chatter.
We were talking about Latin lessons and study habits when the pretty, young daughter of a friend stepped through the door. Her mother had been admitted to the hospital with pregnancy complications just the day before, so I took her grinning appearance as a harbinger of good news. But then the mama who had carpooled her to the holy hour joined the conversation clutch and somberly informed us that the mother we’d been fervently praying for had delivered her too-soon-to-be-born baby during the night. The sweet, little harbinger still did not know the sorrowful news.
While attempting to digest that reality, someone happened to mention the loss of yet another precious expected one in miscarriage. Completely unprepared, I felt like someone had just punched me in the gut. Their losses twinged that tender nerve that carries me back to my own memories of intense anguish and confusion. Not to mention, I couldn’t help, but feel the weight of disappointment in yet another seemingly unanswered prayer.
Thankfully, a gentle interruption soon came reminding us that the holy hour was beginning. Deflated by all the sad reports, I quietly followed the children into the sanctuary and found my place in the pew.
Then the bell was rung, announcing the procession to the altar. Once we’d risen, Monsignor started that familiar hymn which he often leads daily communicants in. “Jesus, Jesus, Jesus in the morning, Jesus in the noon-time, Jesus, Jesus, Jesus when the sun goes down.”
A simple song, easy to sing along with (even without musical accompaniment), it had become a favorite of mine, but until that minute I suppose I’d been most attracted by its easy repetitive rhythm and uncomplicated lyrics. Hearing the song again, on that particular morning, it spoke something new to my heart.
A sudden rush of euphoria lifted my spirit up as Monsignor led the verse again. Staring at the monstrance which would hold my beloved Jesus, I understood. Like the clarity you get when someone corrects your mixed-up version of the song you’ve been crooning (like when you finally realized Jimi Hendrix wanted to “kiss the sky” and not “this guy”), Jesus revealed a deeper truth.
Jesus, Jesus, Jesus in the morning.” The rising of the sun, the start of every day, morning holds promises of newness and vigor. Those tiny babies, whose earthly time had been so brief, resided in the morning of life.
Jesus in the noon-time.” Midday, the time when production peaks and energy can run thin. My friend who was caring for his dying mother, the mamas who missed the opportunity to cradle newborns in their arms, all of us who imagine our days will be numbered into years, we’re marching in the noon-time.
Jesus, Jesus, Jesus when the sun goes down.” Sunset, when the light fades and the invitation to rest looms near. The woman lying on a hospital bed drawing her last breaths, she was watching the setting sun.
My pleaded petitions had not been answered according to my hoped-for designs. Thinking of Martha and Mary, who while newly in their grief had insisted their brother would not have died if Jesus had only come sooner, I could relate to their disappointment. But on this day Jesus was reminding me, through the words of a hymn, that nothing had escaped His vigilant watch. Not then and not now.
So where is our Lord when the storms rage and illness overcomes the body? He is there in every moment. He is constant. He is steadfast. He is unchanging. Not one cry or whispered plea escapes His hearing. He established our days from the rising to the setting.
As the lyrics proceeded, I filled with greater awe and wonder that the God of the whole universe might care to offer me this sweet consolation. How many times I buzz through my days, following in the well-worn grooves of my routine. Sure I remember to talk with God now and again, but some hours I can be careless and self-absorbed. Jesus, however, is there in every solitary second. We are never alone in the journey.
Indeed, inspired by this simple hymn, I will do better to follow the song’s instructions- to praise Him, to love Him and to serve Him in the morning and in the noon-time and when the sun goes down.

The Hard Work of Healing, Dancing With Grief

dancing with grief

Having just spent some part of the night curled up on the hard waiting room floor, I awoke and made my way down the long corridor of our temporary lodging, the Pediatric Intensive Care Unit. His room was on the right at the end of the hall, his bed the first one to the left. Freshly scrubbed in, I eagerly greeted my sweet firstborn, who was lying still and quiet in his sterile, warming bed.

It’s a curious mechanism our brain has to shield us from trauma. Perhaps, we could call it hopeful vision, the way we can miss the signs of impeding sorrow. We’d been on the roller coaster of good days and bad nights for weeks, but my hopeful eyes saw a future beyond the web of wires and tubes.
Things aren’t looking so good,” the day nurse said gravely. Swelling and fluid, more drainage tubes and another procedure are words I can recall from that early morning conversation. Dazed and confused, I made my way back down the stretch of corridor to the pay phone in order to tell my husband he must hurry back. He’d only just returned at work, but there was no time to spare.
Some time later, once again relegated to that stiff, cold waiting room, my husband and I sat side by side staring into the thin air. That’s when he walked in and took up the seat beside us. I’m not sure if the room had been empty of others before his arrival or if our fellow parents had silently vacated upon his arrival, but when the chaplain took his seat we were his only companions.
Only a week or so earlier, another family sat alone in that waiting room. Holed up in that room of tears, they received the news that their beloved daughter had lost her battle against sickle cell disease. The chaplain requested that we give them the space and time they needed, so the rest of us parents lingered in the hallways or made our way to the second, less popular waiting room around the corner.
Now I realized in that moment with the chaplain seated beside us, it was our turn. I held my breath in dreaded anticipation.
The chaplain, with compassion in his eyes and tenderness in his voice, called our attention to the flurry of doctors and staff who’d rushed down that endless corridor. He didn’t have definitive facts, but he’d taken note of their concerned expressions and the larger than normal number of white coats crowded into that room on the right.
  • Eyes Wide Open

In the hours to follow, the blinders peeled back and we would see our son’s bloated form lying with an ever increasing limpness. Curtains drawn around us, the other patient in that shared hospital room seemed to disappear. I’d grown accustomed to the silence of sickness, but in those torturous hours I begged for some confirmation of the transition between life and death. I had only the machines to provide me clues.

Then, numbers declining, I lifted up my child along with the twist of leads and tubes and pressed him close to my body, where only a short month before he had resided. His daddy, standing behind me, encircled the two of us in his strong arms. Our trinity held fast until the last breath of life escaped our baby’s lips and his heart took its final rest.
On that day my first extensive journey into grieving began. Elisabeth Kübler-Rosslaid out the steps to the dance I was about to undertake. Denial, anger, bargaining and depression spun me around like a ballet dancer practicing herpirouette.
  • Step #1 Mastered

I can remember the exact location and approximate time of day when I first accepted that my son had died and he wasn’t going to be miraculously resurrected in my lifetime. A few months had gone by since we’d handed his lifeless body to the hospital chaplain that August evening and I was driving on the highway home from work. Like a wave that overwhelms, pushing you down under its watery power, I was suddenly and violently awash with the reality that he was gone, really gone. Peculiar sounding I suppose to the non-grieving parent, but I’d secretly believed until that exact minute that my son would be returned to my aching arms somehow. Now the well practiced step of denial mastered in that moment, my concentration was directed to the remaining emotional hurdles.
By the grace of God (quite literally), I discovered The Compassionate Friends (TCF), a national support group of bereaved parents. At the first meeting, during the circle time when they’d go around and share their stories, I developed a lump in my throat the size of a lemon and couldn’t utter a single word. While unable to pour out our history on that first evening, I began to learn the motions required to participate in the day to day masquerade of living (how to fake a smile, how to pretend your heart isn’t broken in two).
A couple of sessions later, a beautiful, mature woman named Marie taught me a life lesson that I will never forget. Marie lost her son, Sidney, while she was a young mother. The doctor, in his archaic, old-school thinking, had advised her to “go home and have another baby.” Seeing no other way, she followed his callous prescription. Through the course of years her family grew until one day Marie found herself a blessed grandmother. But then her grown daughter lost a son to sudden infant death syndrome (SIDS) and that dance partner grief emerged from his perch on the sidelines to spin this grandmother/mother hard and fast. You see, Marie explained, grieving is difficult work, but work that must be done in order for healing to be accomplished. Having cast aside her early anguish did not negate its affect on her life. It served only to postpone the inevitable task of swaying back and forth to the rhythm of mourning. Now her sadness was multiplied by two.
It took several years to trudge through the quagmire of my dolor. But I followed the path even though it knocked me down hard at times. Like the novice dancer, just as I would gain my footing memories (made and unmade) rushed in to topple me. I would remember a word of encouragement spoken that never came to fruition or revisit the feel of his tiny grip on my finger. There was the first Christmas he’d never get to celebrate and the Easter basket he’d never fill.
  • Oh, Just Get a Grip

This is the period when some of us choose to “get a grip” and push our emotional steps aside. Many times acquaintances on the outside encourage us to forget the hard work and “move on.” I received that advice after the six month marker when, to those on the outside, my allotted period of sadness needed to end. However, Marie’s advice freed me to embrace my dance partner grief and allow myself to be led along a time line with no predetermined limits.

Unlike that day of reckoning on my drive home from work, I can’t pinpoint the time or place when I finally mastered all the poses. But the day did come when I stood tall and straight and crossed over the threshold to acceptance. Of course, an occasional tear still escapes some years on my son’s birthday, but it is a healthy tear, one that marks a moment of remembrance and not regret.
Watching an episode of a reality weight loss show, I was intrigued by the story of an overweight couple. Having lost a child years before, they swallowed their emotions (in thought and action). Like Marie, they had to discover that grief lies in wait.
I sometimes ponder whether in times passed, when death wasn’t such a foreigner in our lives, if people had a healthier perspective with regards to dying. Children more often didn’t grow into adults and old age came sooner. Sickness was treated in the home and the dead weren’t visited in a funeral home, but in the family’s parlor. The living had to care for their own through every step and generations shared the experience. We were forced through necessity to do the hard work. Distractions and escape were more elusive so that mourners had to visit and revisit the places and markers of our losses.
  • Grief Doesn’t Look the Same for Everyone

Grieving can come in so many forms not just from the loss of a loved one. Couples mourn the loss of children they aren’t able to conceive. A man grieves the loss of his ability to provide an income for his family. A woman weeps over the loss of her breast to cancer. A child cries over an absent father. An old woman agonizes over the loss of her memory.
In this fast paced age of anti-depressants and unrealistic ideas of the ways and means to true happiness, it is no surprise that people are suffering in silence. They are eating, swallowing, smoking and injecting their pain away. We’ve been sold on an idea of what life is meant to look and feel like, pretty and easy. So when real life occurs we are broadsided and unfamiliar with the hard work of healing. But if we break out of that misshapen mold and allow ourselves to suffer the cross, to bear its full weight for awhile, then we can be assured of hope, sincere hope, for our future.
For just as Rachel wept inconsolably for her children who were no more, so too we should allow ourselves to sob bitterly for our required time. And then, like Rachel, God will turn our mourning into joy and we will find ourselves healed and able to dance in merriment again.

Then young women shall make merry and dance,
young men and old as well. I will turn their mourning into joy,
I will show them compassion and have them rejoice after their sorrows.
Jer. 31:13

flowers bloom

Roses in Bloom, Miscarrying Matthew Titus

My husband can attest to the fact that I haven’t a single green appendage (aka green thumb); however, I’ve planted rose bushes at every house we’ve shared. Planting them was easy, but the rest I left to nature. Typically, my minimal efforts produced results to match.

When we moved to our current house four years ago, I again planted some new rose bushes just beside our front porch and relocated a resident climbing rose bush to the Marian garden. Last year, having purchased two apple trees, I felt compelled to try a little harder and so I rummaged through the shed and found a container of plant food. Food in hand, I circled my way around the yard sprinkling here and there our azaleas, apple trees, and my rose bushes.

I’m not really sure why I have this affinity for rose bushes, but just the thought of them brings three beloved people to mind. My mother had some roses planted just across the driveway from the side door (the door we actually used to go in and out as opposed to the front door that only strangers entered through). I think they were peach in color and I have a picture in my head that my mom took of my sister posing beside them.

 

Continue reading

Simeon’s Blessing: A Reflection on Loss and Grace

St. Simeon

We were thrilled when my fertility charts unveiled the blessing of a new baby. One of the joys of charting is that we are in tune with our mutual fertility and we are able to express our intimate love for one another while anticipating that that love has the potential to spring forth into a life of his/her own. 

 

Many of my friends know my story about how I turned my heart and fertility over to Jesus through the hands of my Blessed Mother nearly 10 years ago. Greg and I had faced a tremendous trial that threatened to tear our marriage apart and I was confused and frightened and receiving lots of misguided advice. We were already the parents of four living children and one angel, so I wondered whether I needed to “protect” myself by withholding part of me, my fertility. Dropping to my knees and offering it all over to Our Lady was a defining moment in my life and I’ve never been the same since. 

Recognizing Our Childbearing Years Will End

As I get older, I recognize that the day will come when childbearing will be beyond me and so I really took the time to thank God often for this new baby. And of course I have the perspective of having lost Dimitri 15 years ago to remind me daily that life is precious and fragile. When the little discomforts like nausea and fatigue set in it was my opportunity to offer up those small sufferings in a way I hadn’t with other pregnancies. I am so glad.

When I was about 11 weeks along the whole crew of us had the privilege of “meeting” our baby via an ultrasound. I hold tightly to the memory of that little body lying still with heart beating until his siblings entered the room at which point he began to turn around as if he was ready to play with his five brothers and two sisters. I have mixed feelings about ultrasounds, as I think they are too often overused or, worse yet, misused, but this one was to be a great blessing.

I made it passed the 12 week marker which is a general relief for pregnant mothers as it usually signals that the baby has a good start and is firmly planted in the womb. But then in my 13th week I noticed internal spotting and a sense of fear and dread erupted. We spent a bit of time trying to discern the best course of action for our baby and so we followed some advice and headed to the emergency room. I had only one burning question to be answered, “Was our baby still alive or had my womb become a grave for my sweet little one?”

The Horror And The Wait

The experience of that day was a horror. Our dignity was disregarded and compassion was no where to be found, but in reflection I simply hope and pray that my witness was of value and that my humiliation was an offering. We learned that our expected child had died while still cradled in my womb and in a moment our dreams and plans for this child vanished.

I had two distinct prayers from that day on, that I could deliver our baby away from the harsh world and that I could be spared from surgery. For the next few days we waited, but no progress was made. 
 

Our wonderful priest called and encouraged me to ask God to reveal the sex of this baby and the name to be given. What a comfort and affirmation of life he offered. 

My attempt to induce labor on Friday was to no avail and so I tried again on Saturday. I was blessed to bring about the dilation of my cervix and on Sunday morning I felt that warm rush of my water as it broke and the gentle release of my tiny baby. I called out to Greg, who joined me as I reached down and lifted our son into the palm of my left hand. So quiet, so peaceful was that moment. I gazed in total awe at him. God answered my prayers. I could clearly recognize that we had another son and I could count his ten fingers and ten toes. He was beautiful, albeit only about two inches long from the top of his head to the end of his tush. His eyes were closed and I could see that he had the special smile of a cleft lip. Like any mother I had to take it all in, every bit of him. 
 

On his backside I discovered the sign of a neural tube defect and I came to better understand that God’s mercy was at work. That is not to say, that we would have wanted him any less if he’d been born with challenges or that God does not have great purpose for children of all abilities and disabilities. There was sadness, but I don’t remember crying much in those early hours because I was overwhelmed by the gift of this brief time with my son, Simeon Christian. 

Finding His Place

The time came when I realized that we needed a place to lay his body until his burial. I was mulling this over when I walked passed my dresser and a long forgotten box caught my eye. It was a little brown box with a cross on the top and, as I discovered when I lifted the lid, a picture of Our Lady was on the inside. Lilia had made it for me, but I can’t even remember when. Now God drew my eye to it and it became apparent that it was meant for Simeon all along. 
 

God had clearly revealed to us that we had another son and now we understood that he was to be called Simeon Christian. To be honest, it was the only boy name that we’d chosen (we had a number of girl names) and we realized that if that was the name intended for him in life it still belonged to him in death. A few days later, I was reflecting on this and I couldn’t remember who Simeon was in the Bible, so I asked in prayer. Not an hour later an email arrived from a friend which told about her recent study of Simeon, the man at the temple who held Jesus at the Presentation. 
 

The second half of Sunday consisted of another trip to the ER where I was allowed to bleed for too long. There was a period of time in which I thought it possible that I would be joining Simeon and I felt a strange sense of calm and peace. I needed only grace and prayed in reparation for my sins and then trusted. God answered my prayer as I was spared from the emergency surgery that had seemed eminent and the hemorrhaging stopped. After a transfusion, we were able to return home.

Memorial Mass

On Monday we, along with our priest, buried our sweet baby in our Marian garden. On Wednesday our priest celebrated a memorial Mass for Simeon at which his brothers served.

Friends have been so generous as to bring us meals which has been more help than they might know as it is taking me longer than I’d hoped to recuperate physically. Emails, cards and a few phone calls have come when I was feeling especially low. Grace and blessings have been poured out upon us for which I am ever thankful.

But it has to be said that the pain and sorrow of losing another child isn’t somehow less gut wrenching because he was so young. I remember well the loneliness of grief when we lost Dimitri 15 years ago. It was a deep searing sorrow I’d prayed would never be revisited, but God’s plans are far above my own and so I must work through it all again. Ten years ago when we went through that first trial, a counselor had me reflect often on a particular verse. In the last week that verse has been presented to me again and again through a variety of means. For I know well the plans I have in mind for you, says the Lord, plans for your welfare, not for woe! Plans to give you a future full of hope. When you call me, when you go to pray to me, you will find me. Yes, when you seek me with all your heart, you will find me with you, says the Lord, and I will change your lot. Jer. 29:11-14 I’m listening, Lord.

To Be People For Life, We Must Realize Its Connection To Death

Additionally, Greg and I had quietly endured the loss of another baby when we moved to our current home 3 years ago. We’d buried the remains in the Marian garden all alone. I’d felt the baby was a girl and named her Mary in my heart, but I never shared that with anyone, not even Greg. As he blessed Simeon’s grave, Fr. Meares mentioned moving the angel that sits next to Mary because he had no idea. All of this led Greg and I to tell the children about their third sibling in heaven which has been so freeing. I’ve carried around the guilt of never having given her proper recognition. Dimitri, Mary and Simeon are my children and I miss them so. I hold fast to the knowledge that I’ve succeeded in my job of getting them to heaven and in the hope that someday their prayers will reunite us. Until then I entrust them to Jesus and ask their Blessed Mother to hug them often on my behalf.

I understand that it is difficult to know the words to say to us, but all we really need is simple. Ask, “How are you doing?(really doing)” We need to have his life acknowledged. You never had the chance to behold his face, but that doesn’t mean he wasn’t here. We need a sincere hug, the kind that melts away the barriers. There may be tears, but tears are part of the process. 
 

To be a people for life, we must remember it is connected with death. We are blessed to celebrate the joy of Easter every year because we first recall the sacrifice and sorrow of the cross. And so it is for those of us who are enduring the loss of a child, we cannot skip the pain and hope to find complete healing. 
 

Thank you, Dearest Jesus, for the blessing of Dimitri Mikhail, Mary and Simeon Christian.