Sacred Hearts

I've put off blogging a bit because I really wanted to document my thoughts about June 24th and well, that's a sticky wicket. That's the beauty and bane of it being my blog, I guess. So I'll get that out of the way now.

I know it's a contentious subject and I have many friends and family that don't agree, but I'm still in awe that I lived to see the day that Roe v Wade was overturned. For those of us who believe in the humanity of the unborn, there is NO justification for their willful termination. I'm not discounting the true burden or the difficulties of child bearing and rearing. I'm pretty educated on the issue. Yet, I can't condone the idea that some humans can decide other humans are better off dead, no matter the burden. I can think of many other times in our history where that has been practiced and now it is roundly condemned. We have learned that to be on the right side of history means we can not be personally opposed for me and not thee when it comes to the taking of innocent life, or enslavement, or rape, or really anything that causes harm to another being. 

Regardless of the humanity/personhood arguments, has abortion really been good for women? Is it a practice that must be enshrined into our constitution? How has the pitting of a woman against her own progeny to the tune of 63 million benefitted anyone besides those who profit from the procedure, and the fathers who can walk away? Abortion is oppressive, violent, lucrative, racist, and abusive. It is not a pregnancy reversal. It continues the lie that women must deny their inherent femininity in order to be equal. It perpetuates the lack of support for woman who choose life because they had an "easier" option. 

A renewed respect for human sexuality and strengthening families wouldn't hurt matters. We've forgotten sex is procreative. Our lives begin at conception. We are not commodities whose value is found only in our utility or ability. Our dignity and worth is not found in an individual or a government's willingness to love or care for us. Yes, this means poor, abused, "unwanted" people will continue to make up this world. Willing death is not the answer. Ask the poor, the hungry, the abused, the sick, and those conceived in rape if their lives are worth living before voting for a right to end them. While asking, listen to their stories.  

The issue is far from settled, of course. There is a lot of scrambling on this altered field. The whoppers are certainly flying. A fetus no matter how young sometimes has to be delivered early to save the life of the mother. That is an early delivery, not an abortion. Even if the baby has no chance to survive, like in the sad event of an ectopic pregnancy. Intent matters. Care after a miscarriage to evacuate the uterus is not an abortion even though it is medically coded as a Spontaneous Abortion. The spontaneous part matters. These medical interventions are still legal in all 50 states and are not seriously contested. I could go on. 

Our society has a long way to go in recovering from decades of national legislative approval that discounted the humanity of the unborn. Their lives still hang in the balance in half the states. Millions upon millions have lost their children and grandchildren to this practice. That's a lot of pain and suffering, whole generations of needing it to be ok. Our brokenness runs so deep. May this be a first step toward a more just world. 

My hope is that people who have ignored the topic will be awakened to investigate the truth of the abortion procedure and industry. I pray that those who are hurting from abortion will seek healing. I pray efforts both public and private will be redoubled to care for struggling families and single moms and that the pressure to "get rid of the problem" can be reduced. I must repeat that intentional killing is not a moral response to lack of resources.

Anti-abortion sentiment has often been dismissed as a religious argument. Yes, my conviction is supported by my faith, that every human life is endowed with dignity at the moment of conception by the Creator. But many who claim no religion come to the same conclusion by science or ethics or personal experience or logic alone. Still, we Catholics were touched when the reversal occurred on the feast of the Sacred Heart of Jesus, which is all about God's infinite love for mankind. Despite our deep divide on some topics, no matter the circumstances, we're all created with dignity. Have mercy on me for all the times I've confused someone's beliefs or behaviors with their worth. Lord, open our eyes to your passion for us and may we extend it to all the others. 

Back to regular stuff.

Meddlesome Memories

Ben celebrates his 20th birthday today. Two decades of hard earned breaths and heart beats. There are few areas of his body not yet managed by specialists. He's had more surgeries than birthday cakes. Both medical history and current condition is complicated and overwhelms intake paper work. And yet, his miracles are knit together by these things too. This uncommon life made Ben into Ben and our family into us.

I always slip into reverie at the start of May. This time, I happened to be on the 7th floor of the hospital where that first code was called. It was the anniversary of the day he was decannulated three years later. Just walking by the curtained glass of the regular newborn nursery and hearing a baby's heartbeat on a fetal monitor jettisoned my psyche back to those first mind numbing panicked moments of parenthood. I guess that's a hallmark of trauma. That event split me forever into two. Who I was before and who I am becoming. 

A few months ago I learned more details about that first arrest from someone that was there. Someone who later became a friend. Someone who directly had a hand in saving Ben's life. God gave me the gift of knowing that story. A story that brought me healing and even more awe and wonder at God's intricacies of mercy. The moment that I would once have described as hellish, has been somehow washed by the light of heaven. It has become holy, marking the place where I finally reached up to heaven to take hold of God's outstretched never wavering hand. Today I feel gratitude for that event. Falling to my knees, looking to heaven in astonishing hope, wiping hot tears, thankful. Who am I that my Lord should come to me? 

His Hands are busy orchestrating unimaginable perfect labyrinths of serendipitous wonder and yet they remain infinitely open. Ben has endured more than his fair share of suffering. What share is fair? Ben is fond of saying, "a little pain never hurt anyone." I promise there is beauty hidden in these hard years. The anxiety and stress is sanctified over time into surrender and unseeable strength. We've mettled. We've meddled. We've medaled. 

I remain in awe as Ben wraps up his freshman year of college, living, thriving rather, independently away from home. Studying miracles, no less. I've so missed being in his presence. I miss the dynamic he has with his siblings. I miss his banter and quips. I even miss the sounds of his airway vest and pacing the floor at 6am. But I must have reached a new tier of parenting level, the one where I'd rather have him living out God's will for his life than snuggled in my nest. 

Surely Ben tires of my nostalgia. My weepy birthday greetings may abrade. But I promised God I would tell the world what He has done. I keep my covenants. 

The Lord has done great things for us, and we are filled with joy. -Psalm 126:3

I'll never stop hoping life will become easier for you. I'll never stop praying for your health and safety. And I'll never stop thanking God for the gift of you. 

Happy Birthday Ben. We can't wait to celebrate together. 

Allow the one who bore you another trip down reminiscence road. 

My (brief) Adoration Testimony

A friend asked regular adorers to summarize our thoughts on Eucharistic Adoration for our church bulletin. Here's mine: Before committing to a regular adoration slot I would stop in when struggling. Jesus lent a quiet ear. I’d pour out my worries and come away lighter. Eventually I felt drawn. Will you not stay awake one hour?

There’s countless ways to adore. I’m reminded of the farmer in St Vianney’s parish that would sit for hours before the monstrance. When asked what he was doing all that time he replied simply, “I look at Him and He looks at me.” 

Though I have tried to employ this advice of less chatter and more gazing in wonder and awe, I frequently find my mind wandering into list making or studying the rug pattern. Once, I decided to combat this tendency by saying the name of Jesus to myself each time I began to wander away. Eventually I was repeating His name over and over in rapid succession when I was interrupted by an amused and kindly presence. Jesus said to my heart, “Stop saying My name so that you can hear Me say yours.” 

There is nothing lovelier than hearing our name from the very lips of our beloved. 

Go to Him. He waits for you. 

Behold your Mother

After consecration to Mary, many in my prayer group were led to do an informal study of Marian apparitions through history. To cull the list, we stuck to those that have withstood Vatican vetting. I seek to summarize what I've learned and to plant a seed for further study. We were led on a beautiful journey of discovery that culminated in a field trip to the Miraculous Medal Shrine in Perryville where we were invested in the medal. 

It was after the trip that I learned there is a local farmer that claims to have regular visions of Our Lady on the 13th of every month (today!) at the grotto on this site, for nearly 20 years. I can't speak to the authenticity of this claim, nor do I think it has yet met the requirements for even local approval, but I can attest, that the shrine is bearing great spiritual fruit. It is holy ground. Here's a link if you wish to read more: Divine Mysteries

First we studied the apparition of the Miraculous Medal to St. Catherine Laboure (thus the field trip). This occurred in Paris in 1830 at the Convent of the Daughters of Charity (think 'Flying Nuns') which was founded by St. Vincent de Paul. 

On the night of July 18th Catherine was awakened by what she believed was her guardian angel and led into the chapel. There she saw Mary seated in the presider's chair. Catherine knelt at her feet and placed her hands in Mary's and remained in intimate conversation for hours. 

On November 27, she returned giving Catherine a vision of the medal she was to have made and distributed. Mary was pictured as beautifully robed standing on a globe while crushing the head of a serpent. Her fingers beheld jeweled rings from which rays of grace descended to the earth. Some jewels were darkened for the graces she has to distribute that no one asks for. The words, "O Mary, conceived without sin, pray for us who have recourse to thee," encircled the image. The opposite side was stamped with the letter M and the cross for Mary at the foot of the cross. Below were the Sacred and Immaculate Hearts. The image was surrounded by 12 (aspostles/tribes of Isreal) stars. Mary said, "Have a medal struck according to this model. All who wear it will receive great graces." 

Catherine obeyed and the medal was initially named, "The Medal of the Immaculate Conception," but was soon called miraculous due to the overwhelming protective and healing effects. By the time of Catherine's death, billions had been distributed. The shrine continues this mission of distribution today. 

One of my favorite Miraculous Medal stories is the conversion of Ratisbonne. He'd been raised in the Jewish faith but by adulthood professed no faith and was particularly hostile to Catholicism. His brother had become a Catholic priest which distressed him greatly. On a dare, he donned the medal to prove it had no effect. He reluctantly entered the Basilica di Sant'Andrea delle Fratte in Rome accompanying a colleague on an errand.  Mary appeared to him exactly as depicted on the medal. His conversion was immediate. He wept, demanded baptism, and eventually became a priest. 

Of course, I can't forget my own connection to the medal. It was at the Shrine on November 5th, 2016 that I first put one on, vowing to ask daily for the grace needed for the day. Without planning, by Advent, I was praying a daily rosary. By July, I began the devotion of the five first Saturdays and the brown scapular. One year after putting on the medal, on November 5th, 2017. I boarded the plane for Fatima and my eventual physical healing. I call this the breadcrumb effect. Mary keeps tossing out little bread crumbs to gently lead us into deeper relationship with her beloved Son. It's such a gentle and simple path, like holding the hand of your mother. 

Ask for Grace

Place your hands in Mary's. She'll take you to her Son. 

Relic of St. Catherine Laboure

Our Lady of Fatima

Speaking of Fatima, Mary appeared six times to three shepherd children on the 13th of each month in 1917 Portugal. She is big on appointments. She asked for reverent prayer to God, especially the daily rosary for peace, repentance, reparation for sins, and devotion to the hearts of Jesus and Mary. She said there would be a miracle at the last apparition which became known as the Miracle of the Sun. 

Surrounded by a crowd of likely 70,000 onlookers in torrential rain, Mary revealed she was “The Lady of the Rosary.” She asked that a chapel be built and the rosary recited every day. The war will soon end and soldiers will return. God is much offended, do not offend Him anymore. Mary opened her hands and launched a ray of light towards the sun, it began to turn, cascading brilliant light in all directions. It then suddenly seemed to crash toward the earth and many knelt in terror, begging for mercy. All present, including many miles away saw the sun dance and leave its fixed place. 

Only the children saw the visions of first the Holy Family as the infant Jesus blessed the world, Our Lady of Sorrows with her pierced heart, and finally, Our Lady of Mount Carmel holding the scapular.  When the phenomenon ended, the rain had stopped and everyone was clean and dry despite their previously muddy and soaked conditions. Many atheists who had come to mock the believers were converted on the spot. 

Next, we studied the apparition of Lourdes to Bernadette Soubirous (sounds like Suburu) in 1868. I love that Bernadette's immediate reaction to the vision was to kneel, reach for the ever present rosary in her pocket and begin the prayer. Mary bowed her head and joined in, only saying the Glory be aloud, since she wouldn't need to ask for daily bread or participate in aves to herself. At the next vision through the prompting of doubters, Bernadette threw holy water at her in case she was of the devil, to which Mary smiled, bowed, and blessed herself. The spiritual and physical healings of Lourdes still speak to the fruits of this encounter. 

We studied the very recent and less known apparition of Our Lady of Kibeho, Rwanda Africa. Mary appeared beginning November 28, 1981and gave warning of the genocide to come, which was unheeded. The first three visionaries' claims have been named worthy of belief by the Vatican. Mary highlighted the value of the seven sorrows chaplet in which we are to meditate on the sorrows which pierced her heart. Her messages here were heavy on mercy and redemptive suffering. I highly recommend genocide survivor Immacullee Ilibigiza's books, "Our Lady of Kibeho" and "Left to Tell." 

Next, we visited to stories of Knock, Ireland which occurred in 1879. This apparition is unique in that so many of various ages witnessed it, and it was a silent vision. On a dark and rainy night August 21st, fifteen people saw an image of light emblazoned upon the outside wall of the humble village church. The figures of Our Lady, St. Joseph, and John the Evangelist stood alongside an altar on which rested a lamb beneath a cross. Angels hovered about. The image remained in place for hours and returned three other dates to others. There was also the phenomenon of unwet pouring rain. The meaning of this pictograph is open to interpretation, but many have described the witness to hope, the meaning of the Mass, Mary's prayer and intercession for us, Joseph's silent obedience, John's role as the Tradition of the Church and Liturgy of the Word, while Jesus, the Lamb of God, as the sacrifice of the Mass. Others see apocalyptic warnings, and local warnings of the famine and persecutions ahead. 

And finally, the grandmother of all Marian apparitions, we studied Our Lady of Guadalupe. December 9, 1531 Mary appeared as "the woman clothed with the sun" from Revelations to a recent Aztec convert to Catholicism, Juan Diego. She gave him the seemingly impossible task of convincing the bishop to build a chapel on the hill which soon resulted in the immediate conversion of millions and the end of human sacrifice in that region. 

Juan Diego missed his appointment with Mary on December 11 because his uncle Juan Bernardino was dying. On December 12, he was hurrying to fetch a priest to administer the sacraments. He took a different route in order to avoid another encounter with the Blessed Mother, embarrassed that he had missed the appointment and not wanting to be delayed in seeking spiritual help for his uncle. Our Lady appeared to him nonetheless, the fourth time, assuring him that his uncle was already cured and instructing him to gather flowers on the top of the hill as a sign to take to the Bishop. “Am I not here who am your Mother?  Are you not under my shadow and protection? Am I not the fountain of your joy?  Are you not in the fold of my mantle, in the cradle of my arms? Do not grieve nor be disturbed by anything. Do not be afflicted by the illness of your uncle, who will not die now of it, be assured that he is now cured.”  Juan Diego trusted Our Lady and found on the top of the frozen and barren hill the most beautiful Castilian roses, not native to Mexico. He gathered them and Our Blessed Mother arranged them in his cloak, or tilma. Juan then hurried to the Bishop’s house. When he opened his tilma to show the flowers to the Bishop, Our Lady of Guadalupe appeared depicted on the tilma. The Bishop immediately understood the truth of Juan Diego’s message from the Blessed Mother and hastened to have the chapel built on Tepeyac Hill. 

The image itself is the most fascinating aspect of this apparition. Despite centuries of being subjected to the elements the cactus fiber cloth which should break down within thirty years, remains intact with its original vibrancy. The manner in which it was made cannot be explained scientifically. The image is a pictograph immediately understood by the Aztecs. She appears as a beautiful young queen that is both virgin and with child. The stars on her cloak represent the constellations as they appeared that Dec 12th night. She occludes the sun which was the god at the time, a god that demanded human sacrifice to continue to shine. Over her womb, is a flower in the shape of a cross, the sign of the Divine and the center of the cosmic order to the Aztecs as she bears the true God. Her hands are folded in prayer and her feet in the dance of worship indicating that she is not divine, but worships the One who is greater. The cross brooch around her neck is the cross of the Spanish missionaries that had until then been unsuccessful in their mission of evangelization. She stands on the moon, a symbol of another ancient Aztec god announcing the true God. An angel with eagle's wings supports the Mother of God. It was the "bird of the sun," now servant to the Virgin. She holds her mantle in one hand and robe with the other, signifying the Son she bears is both of heaven and earth. 

The unifying theme of all of these apparitions are of the message to turn back to God, to pray (especially the rosary) every day, and that we are not alone or without hope in our sufferings. Also, we all share a Mother, who loves us and looks like us and wants our greatest good (heaven) for us. These events are also accompanied by countless conversions and miracles, bearing great fruit, and spreading through the ages. The seers are generally humble and pious unknown people who willingly suffer persecution to spread the messages of Our Lady. Mary's humility and service to God is obvious, as well as her unique cooperative role in the distribution of His grace. May the messages of our dear Lady be heeded as we strive to be merciful to one another and seek to be pleasing to God in all matters. 

Beautiful Trauma

After a decade and a half wiled as a SAHM/caregiver/catechist/volunteer, more professional endeavors have fallen into my calendar of late. Though I'm still all those other things too. 

I was asked to give a talk at the annual PAS conference as the mother of a medically complex child. It was a pediatric seminar on ethics and supporting families through the big decisions that come with these complex cases. The conference was originally supposed to take place in Vancouver, which would have been so amazing, but giving the virtual live talk from the comfort of my dining room was a bit less intimidating. O Canada, I'll see you one day. 

It was an emotional experience, reliving some of Ben's early days and reflecting on the sorrows and joys of this complex beautiful life. The combined traumatic and miraculous experiences of all those "gathered" together to share creates an air of wonder and heaviness that is difficult to express. 

Added to that, Ben's cholesteatoma has returned. He had a CT yesterday to determine the extent, but he's likely soon to be undergoing a series of procedures to empty his more troubled ear of all functional parts and to surgically close it permanently. The hope is that he'll eventually be able to achieve hearing through a cochlear device. It's disheartening to be facing these unknowns just as he's headed off to college. But the hope of good hearing and fewer infections is something worth enduring for. 

In my talk, which happened to fall upon the birthday of Padre Pio, I touched on the challenges of this life and the lives of several of my friends in similar situations. But I also talked about all the ways these complicated experiences challenge the world to be better. 

One example, is the book my friend Ann co-wrote with one of her late son's doctors. It's called, Shared Struggles. They compiled stories from parents like me and medical professionals then gave a parent and professional commentary on the situation to help bridge communication and understanding in this unique relationship. My copy arrived the night before I gave my talk. I first read the chapter I'd submitted, so touched that Ben's story is spreading in new and positive ways. I look forward to devouring the rest of the book, especially the ones I know personally. I need to set aside the crying time though! If you know any medical professionals or anyone with a medically complex family member or friend, they need this book. It's available from Amazon or direct from the publisher at Springer. 

When Ben was a baby, needing 24/7 specialized care, his nursing agency could not cover our shifts and we'd take turns going days without sleep to keep him alive. We were at our breaking point and our jobs were suffering. Our friend, Justin, with no medical experience saw our distress and offered to take over a night to let us sleep. He promised to knock on our door if any alarms sounded or if he was worried. He repeated this offer and eventually progressed to handling feeds, meds, and addressing alarms himself. He and his wife eventually became our most trusted respite caregivers. This experience led Justin to go back to school to become a neonatologist. His personal experience of intense caregiving influences his care of countless medically fragile babies today. One little trach did that. 

I began a new part time job at the start of the month. I'm a Resident Advocate for Birthstone Corporation in training to become a certified life coach. I'll be helping select the residents for our program and walking along with these moms coaching them as they achieve their goals of self-sufficiency. It's a dream job in so many ways. Years back when Jason and I were attempting to adopt a baby, again and again we felt like it was the mother we should adopt, so she could perhaps become stable and independent and be able to keep her baby. In a way, that's the goal now, facilitating the environment for families to thrive. 

It's a busy time of transitions and growth, but so edifying to be finding new purpose. I feel led and renew my surrender. 

Trach Life: Do the Next Right Thing

I was asked to give a ten minute slideshow presentation to a panel of medical professionals at a local children's hospital about the family perspective on life with a tracheostomy.  I felt that my perspective was very limited since Ben only had his trach for three years and we had a good outcome. So, I asked friends of mine that have been or are still entrenched in trach life to add their two cents. I'm sharing my talk here, but have removed the contributions of my friends since I haven't asked their permission to share here.

16 years ago our first child, Ben was born. My husband and I both worked low income full time jobs and had no family in town. When seemingly healthy newborn Ben was a day old he inexplicably arrested in my arms on the maternity floor. He was in pulseless cardiac arrest for likely 30 minutes. He continued to code and desaturate for four weeks without known cause. His neonatology team advised he be given a trach and g-tube for stability and we agreed. A mere twelve days after being trached Ben was discharged to home. His nursing agency was told he wasn’t expected to survive. Ben had other plans. We would much later learn he had a neuromuscular disease likely in the realm of congenital myasthenic syndrome, though his definitive diagnosis and prognosis remain unclear. 

Ben qualified for 90 hours of nursing per week though filling the shifts was a significant challenge. I recall one morning an LPN we’d never met was sent as a sub. She peeked at Ben gasped and said, “Oh my God! What’s that thing in his neck?” I did not go to work that day, or many other days for similar reasons. It was rare to be sent a qualified care giver and we frequently weighed leaving Ben with subpar nursing vs losing our jobs. 

First steps provided OT/PT/ST/DT nutritional, and social services. Ben could generally be on room air while awake and Bi-pap when asleep. He continued to desaturate but having the trach made it easier to rescue him. 

Ben had countless respiratory illnesses and hospitalizations. He suffered heart and renal failure. Happily, in time, his lung function improved, his desaturations ebbed, and the heart and kidneys returned to normal. Ben was decannulated at age three. 

Though Ben’s entire life has been marked with struggle by disability and chronic medical turmoil, The trached years were our most stressful and isolating. 

 In addition to the demand of 24/7 care, lack of sleep, and frequent traumatic emergencies; juggling medical supplies, equipment failures, pharmacies, insurance companies, billing, nursing agencies, therapy homework, medications, and doctor’s appointments was a full time frustrating job. 

We relied on each other, our revolving door of caregivers, our friends, our many specialists, our Catholic faith, and the on-line support group I had found in Aaron’s Tracheostomy message board. 

The trach board brought together mothers of medically complex children from all over the world. We could help troubleshoot and “vent” to others who understood our unique challenges and victories. I have remained in touch with many of these amazing women. We now call ourselves “The Real Housewives of the PICU.” I asked them to lend their voices to this opportunity and asked what they would like doctors to honestly know about the day to day trach life. Each of these mothers are grateful for the technology that allowed their children to live and thrive beyond what would have been possible in the past. An alternative airway allowed each of us to know and love our children longer. The trach is a life saving but also life changing device that comes with many unintended consequences. It has been our shared experience that many medical professionals are not fully aware of the challenges of the trach life at home.

                                                  (Sharing of other perspectives/photos happened here)

 Though I touched on the stressors that come with the trach life, I would be remiss not to stress the biggest joy, the continued relationship we’ve been blessed to have with our son, Ben. My Catholic faith likely instilled this value in me, but Ben affirms that it is in our struggle that we can be molded into people of extraordinary character. 

My son still lives with chronic medical issues and disabilities, but thanks to the decision to trach, he was gifted with extra time that he is using to grow in wisdom and in service for others. He has a strong sense of perseverance, and empathy, always rolling with the punches.  

 Ben is invited annually to his old elementary school to give witness through his life’s story and to assist with abilities day. 

 He drives. He wants to go to college to be a writer or a computer programmer. 

For one last parent perspective, 

I turned to my husband, Jason. He said, All the problems associated with the trach life are not due to the trach itself, but rather the physical dysfunction of the child, that creates the necessity of treatment. Whether the existing co-morbidities warrant the removal or withholding of life saving treatment is a different conversation than whether or not to trach. No one can perfectly predict the nature of life with a trach. 

 Ben has been grossly misdiagnosed many times. One physician recommended we take muscle biopsies of his six month old heart because he would certainly die soon anyway, and we could use the results to determine the ethics of having future children. Thank God, we did not listen to him. 

Explore alternatives to mantaining airways without a trach, but the ability to breathe independently shouldn’t be a life limiting determining factor. When trachs are required parents and back up caregivers need training and support. Encourage families to engage hospital and community resources. When lacking, they should be created. It is vital for patients to be followed medically and supported for as long as the trach is in place.

 I’ll close with this story: I mentioned our nursing agency had difficulty staffing Ben’s case. A dear friend offered to fill in nights that had no nursing. First he’d watch the monitors and wake us if an alarm sounded. 

 Soon, he learned to address the alarms and progressed to feeds and medication dosing. He and his wife eventually became fully vetted and our most trusted respite care givers for Ben. This experience helped lead my friend, 

 to go back to school and become a neonatologist for this hospital. His time with Ben all those years ago still influences his care for the tiny babies he encounters every day. One trach did that. What I’ve learned by mothering Ben is to give life a chance, we can’t know how it will turn out. When you come to a cross road, do the next right thing. 

 Thank you for inviting me to share my limited perspective on this topic today and giving a voice to my friends who have also walked this path.