What if you didn’t call it “Perinatal Hospice”?
What if you offered a “Predelivery Conference” for women / families with complex delivery needs?
Perhaps your leadership could be enticed to make the needed resources necessary if they thought higher satisfaction scores might come from complex cases.
Maybe the Maternal Medicine MD would clue you into cases where parents were dealing with palliative care situations.
What might you offer in these meetings? (I would argue though, that your mere presence and opportunity to meet some of the team and see the unit through the eyes of parents with a special need would be huge)
- You could discuss their hopes and fears as well as what your unit could provide and what you could not. (I have been able to really help a few families by discussing the smallest things like having a camera available or reserving a private space for their family to wait).
- You could confirm plans already discussed with Peds/ NICU staff or learn who needs a NICU consult (Learning of a disconnect in the expectations/plans of different departments ahead of time can avert disaster in the moment).
- You could host/teach/advocate/refer a private birth class where thee palliative care situation was respected and not have them in groups where they have to suffer with whiney folks who aren’t in their situation).
- Just offering a private tour of L&D / NICU / Mother Baby with the focus on their palliative care situation could be a huge help.
- Have a discussion of getting a “Now I Lay Me Down to Sleep” vs family friend photog vs staff taking photos (Encourage family to have a video camera with sound ready – I’ve see babes who were expected to die quickly make beautiful sounds that resulted in me running down the hall to get a video camera with the intensity of a crazy person).
- Discuss the inclusion of their clergy vs Hospital Pastoral Care – let them know they are welcome to practice their faith in the moment (I once worked in a NICU for 4 years and never saw a Pastor/Priest/Cleric visit ever – what message were we giving to families? I think we did them a disservice.)
- Discuss the inclusion (or not) of siblings in the brief life of the baby. Within the limitations of patient confidentiality, share stories of other families and how including siblings was a benefit/challenge. The moments in the delivery room may be their only chance to all be together and get a photo together.
I recently had a palliative care baby born to a lady who I was only able to have a single phone call with prior to the birth and that one call made all the difference in the world.
Maybe in time the comfort you / your unit / your managers find with pre-delivery meetings, you will fell ready and comfortable branching out a little more and developing a comprehensive program that you would feel comfortable calling a “Perinatal Hospice” but why not start small?
I will be presenting at the Richmond Virginia Grief Summit on Monday Feb 22 and rather than paper handouts, I plan to give out this blog address.
I mention in this blog that I never intended this to be a journal but rather a book with short chapters that can change if I learn something new.
Perinatal Loss Handouts and Education
Resolve Through Sharing / Bereavement Services find literature for staff education and the best patient handouts in the world (also avail in Spanish) plus classes in Bereavement Education.
Perinatal Hospice Resources
Perinatal Hospice Video (English) Go to Perinatal Hospice web portal for links to 6 other languages
http://embracinggraceva.org/ Peer support network that functions between Richmond and DC
http://www.noahschildren.org/ Noah’s Children Pediatric Hospice – Richmond
Other Virginia Resources:
http://amomspeace.com/a-moms-peace.html Peer support and burial resource (they have their own cemetery !) for perinatal loss DC area and south
LLOST Loved Ones Lost to Sudden Tragedy – Treasured Memories program that provides perinatal loss supplies for hospitals
Favorite Books for families:
Empty Cradle Broken Heart, Surviving the Death of your Baby here
A Gift of Time – Continuing your Pregnancy When Your Baby’s Life is Expected to be Brief Here
This was originally posted as a column I wrote for Catholic Stand
(much needed edits have been made)
As a professional who cares for childbearing losses and as a Catholic who believes in the sacredness of life, I pay very close attention to how the media treats the subject of childbearing and loss.
I am endlessly frustrated that the mainstream media has a near black-out on the topic of perinatal death. Over 50,000 babies between 20-weeks gestation to 28-days of life outside the womb die in the US every year from natural causes, not because of abortion. But you would never know it from the mainstream media.
Likewise, I am frustrated with the way conservative media outlets portray childbearing issues. They are fast to see any story that involves babies as an “abortion-related” story with hopes that it will bolster the argument that all life, and in all circumstances and situations, can and should be saved at all costs. The people reporting often grossly misunderstand the nature of these issues and when they write about them they perpetuate poor misunderstanding and serious error. (Actual Catholic teaching is that all human life in all circumstances and all situations is sacred but with the understanding that it can’t and shouldnt be forced to continue at all costs.)
Enthusiastic prolife supporters assume the original writer got the story right and being eager to “inform” others click “share” without understanding the flaws in the story and the misinformation get regurgitated over and over again. This does not help the pro-life cause at all because it “arms” people with seriously flawed arguments, especially on the topic of babies who are born extremely premature.
I understand the inclination to argue that abortion is more wrong if the baby has reached a place of possible viability, and I understand that society has responded to that logic. I understand why some people argue that this helps the pro-life cause. However, there are problems with this line of reasoning, three main ones as I see them:
1) We fall into a dangerous trap when we are tricked into defining 24-weekers as more important and precious than 20-weekers because they have the possibility of survival. Isn’t a main pillar of our belief that they are equally valuable?
2) When people overzealously use the “viability” argument of extreme exceptions—exceptions which are at best extreme statistical outliers and at worst fabricated legends—and present them as reasonable expectations.
3) When people toss around the “24-weekers-can-survive” idea so freely that people mistakenly believe that 24 weeks is “home free” for the baby. Being born at 24 weeks is a serious, dangerous medical condition that is harrowing for the baby and family, and even with perfect medical care nearly half do not survive. For those who do survive it, we rejoice, but we must never consider it in any casual manner.
I have read pieces written in the conservative media that use this second error to argue that aggressive treatment should be given to 21-week gestational-aged babies with the idea that they might survive. The trouble is, there are no treatments for for 21-week preemies – it is an unsurvivable condition. 21-22 weeks is always unsurvivable and most of the time 23 weeks is unsurvivable* – assessing the possiblity that a trial of care is an option for a 23-24 weeker is complex, and requires the expertise of a neonatologist.
So for the infants born at the edge of viability (23-24 weeks) where there is any chance or question of survival, most often (with good communication & collaboration between parents and neonatology staff where both aggressive and palliative care are offered) they get a trial of full neonatal care. It is still impossible to tell from the start who in this group is too premature to live and who will survive so a significant group of babies who get full and thorough care still do not survive. This is, again, a group hardly ever mentioned in the media. Neonatal doctors and nurses are getting really good at transitioning theses babies to competent palliative care once it is clear they cannot survive.
Returning to the way-too-early-to-survive babies, someone might argue, ”We’re just trying to show that these babies are important, if a little exaggerating of their survivability makes a point, what is the harm?”
The harm is that it misleads pregnant mothers and fathers. If it is bandied about in the conservative media that ~21-week babies survive, when their moms come into the hospital imminently delivering a baby this small, they have been told that a treatment is available that simply does not exist. It is genuinely irresponsible and cruel to tell the childbearing population that babies born at 21 weeks have any chance at survival.
I have seen this sad situation more times than I would like to recall. The neonatologist professionally and thoroughly explains the limitations of neonatology and how the medical professionals will provide comfort care in preparation for the baby’s death, and the family is (understandably so) shocked and befuddled after that conversation. Nurses like me are then left to reinforce what was communicated and to review the plan of care. What already is a horrible, painful, and agonizing situation for these parents is made more horrible, more painful, and more agonizing by the media who only told them about “miracle babies” and nothing of the tens of thousands who die.
The exaggerations also harm the medical community. There was a story widely circulated in the conservative media about a 21-weeker born in Britain a few years ago. The baby was born alive and the mom mistakenly believed that if the baby were born alive that he would surely survive if only neonatal care were given. The hospital staff were derided in all sorts of ways in the articles and unfairly accused of injustice, incompetence, & apathy. Perhaps more destructive than simply maligning people (who have committed their lives to caring for sick babies) is that this misinformation leads to families developing a distrust of those who are caring for them.
In reality, that NICU staff did nothing wrong. This story was a perfect example of the very sad truth that some babies are born alive who are simply, sadly too premature to survive. If this is something you never knew before reading this article, then our society has failed you as badly, as I fear it has. People are already under-informed about this profoundly important topic and, therefore, it is crucially important for people to understand the full truth about it. There is a danger, a real danger, in making points based on extreme exceptions.
If you search this topic, you may find 3 cases of reported 21+ weeker survival in the entire world over the course of about 20 years. In that same time, hundreds and hundreds of thousands of premature babies that age died.
A few years ago, I received an email solicitation from a very respected prolife organizarion who made an impassioned plea that we should “save” babies born at 21 weeks. This email went out to tens of thousands of people. I know the very capable and respected Physician who consults for them and asked if he was given a chance to review this “information” before it was disseminated and he said they never contacted him. I contacted the group and explained the scientific inaccuracy (claiming there were accepted treatments for 21 weekers). They never corrected or retracted their misinformation and even though I am a person of their same faith tradition and a professional who works with this population, I would describe their attitude toward me as rather disrespectful.
When our society is courageous enough to openly and somberly learn about the unimaginably difficult reality of perinatal death, we may come to value life even more because we will value even the most precarious and fragile lives that do not survive the valiant attempts to give them a chance at a full life. I ask my pro-life friends to commit themselves to understanding the realities of these complicated situations and not to make things worse for families by perpetuating misinformation.
The argument for life is real, complete, compelling and needs no exaggeration. Babies are all miracles and they are all precious, not just the ones who survive extreme premature birth.
*If you are a Neonatologist or Perinatologist and believe I mischaracterized any of the facts here, please correct me so that I can relay the most accurate data possible. If you try to correct me with an article from Lifesitenews, I may go running and screaming through my house in profound frustration and/or go completely insane. Prior to speaking out publicly on this topic, I contacted a devoutly prolife Catholic Neonatologist and asked if there were some new developments out there that I was not aware of and she not only said “no”, she also said that based on the poor outcomes with 23 weekers, her and her colleagues were getting away from aggressive care for 23 weekers and considering them mostly a palliative care cohort.
Please know the photo is not a patient from my workplace, it is a photo from the internet shared by a family who wanted the world tho see the beauty of their baby who was born alive but too premature to survive http://www.godvine.com/read/A-Loving-Family-Discovers-the-Miracle-of-Life-Through-This-Premature-Baby-Boy-425.html
This is my article from Catholic Stand except I elaborated here about Nursing Education
In my work with newly bereaved families (in perinatal death) and in my life experiences of suffering, I have seen a strange dynamic over and over and I finally was able to see this behavior repeated enough to learn something from it.
Most of us probably consider ourselves as “nice” most of the time and always to those who are suffering. I have seen, however, some seemingly “nice” people turn harsh (nearly punitive) to those who are suffering the worst. What would cause this?
What I have come to learn is that scared people are often mean.
Yes, you might be certain that you wouldn’t do that, but if disaster befell your peer (especially someone very much like you) you might be surprised at how quickly you could react in hostility in order to convince yourself that you are “safe” from such a thing happening to you.
In her book Losing Malcolm – A Mother’s Journey Through Grief, Carol Henderson describes how her peer group of childbearing age women were so difficult and hostile in the wake of her child’s death that she finally had to remover herself completely from them. During a subsequent pregnancy, she took exercise classes with much older women because they had suffered enough to understand and support her better that her peers did. I have seen this so many times that I try to gently prepare my newly bereaved mothers of this dynamic before their re-entry into the aisles of Target where they will meet up with their peers.
In Life Touches Life – a Mother’s story of Stillbirth and Healing, Lorraine Ash also described the harsh and accusatory tone that other childbearing women hurt her with after her daughters death. They were so desperate to find some way, any way to convince themselves that the terrible fate that struck Lorraine could not — would not — strike them. They lashed out with absurd statements and questions that inferred that Lorraine had made errors that they would not be foolish enough to make. It would have taken more courage than they had to admit that she was just like them.
I think our fear is exacerbated by our societal delusion that we can control everything — that the right actions will always yield the right results. So if we see someone very much like us suffer tragedy, we grasp at the straws of figuring out what they did wrong so that we can avoid it; if we admitted that they did nothing different than we would have then we are vulnerable too.
I have found that a very effective tool to help nurses avoid being unintentionally harsh during times of infant death is to educate and prepare them to do their jobs well. Even if the situation is very hard, if the nurse feels well prepared to do a good job, then he or she does not manifest subtle hostility. I say if you ever want to see a seriously miserable human, find a Labor & Delivery nurse caring for a stillbirth case who doesn’t feel prepared.
Success is not accidental, to be good at something (especially something that you have almost no exposure to in the general world) requires education and preparation. A nurse who knows she is doing a good job can be compassionate and well applied to the task and walk out of the building knowing she helped someone at one of the most pivotal moments in life. How to do that is a column unto itself but the short answer is “Resolve Through Sharing” training through Bereavement Services in Lacrosse, Wisconsin.
How can I translate these ideas to my spiritual life?
A Biblegateway search of the RSV Catholic edition for the the term “fear not” yielded 196 results. In the last year my children and I have suffered death, injury, dangerous accidents, loss, sickness, pain, and grief. We were never told that bad things wouldn’t happen (for surely they will and we most often don’t have control over many of our circumstances) but we are told over and over that we don’t need to be afraid. God will not abandon us in our trials, and that has been my experience. Even in the worst moments, I have been given consolation both from God and from caring people.
We just learned that Blessed Pope John Paul II will be made a Saint in 2014. This is an ideal time for us to remember his constant instruction and reminder from Scripture to “be not afraid.” We might grow not just in our own experience but in how we treat others, especially those who need our compassion and kindness most.
It is unreal that this was translated into Polish, Czech and Japanese before Spanish, but life is strange sometimes.
Does anyone want links to the other versions? There is talk of translations into French & Italian but I would consider other projects with reliable translations.
Grieving people are a tough crowd…we get upset easily, we seem to hate almost everything people say to us, we see the world so differently than those around us that it sometimes leaves little room for shared experience.
In this blog, I have give many examples of awful things people say and do but what about the good stuff? What about the totally amazing, funny, considerate, dear things that people come up with?
Here I offer examples from my experience, but I invite you to share what wonderful things others did for you (or someone you love).
The first act if kindness I benefitted from was my daughter’s best friend’s parents coming to the house to tend her needs while I dealt with the ambulance/police/funeral people coming into our home – it was all so traumatizing for everyone and I had no emotional or physical capacity to nurture or help her in that storm of events.
The tradition of giving food to grievers was helpful as I really hate cooking in my very best moment, so the food brought by the first person to arrive (one of my Perinatal Hospice moms) was very welcome.
The second person to arrive (also a Perinatal Hospice mom) brought a big box of Benadryl and 4 boxes of Kleenex. She then followed my request to go into Dave’s office (me doing that task which would have given me a breakdown at that very moment) to find important documents we needed.
I could only eat pudding for 4 days and 3 of the moms I had cared for in the past supplied me with pudding. To say that I love these women would be quite an understatement.
Another friend arrived with a CARLOAD of groceries and not just any groceries; WEGMANS groceries with wonderful foods that fed my family for days. She got basic staples and wonderful treats…I was using the butter weeks later and thinking of her and her amazing kindness. (Wegmans is a US grocery chain that is so full of various food and restaurants that if were ever going to be stranded somewhere in the universe, I hope it is in a Wegmans)
Not everything cost money. In our tradition, prayers for the newly deceased and their family are valued over everything. Knowing that there were people out there keeping me, my kids, Dave (I know that praying for recently deceased people is not part of most traditions, but that is a topic for another day) and his extended family in prayer was like an ever present security blanket.
Lawn mowings, yes lawn mowing was a welcome kindness, especially because my husband had done that task right up to his death.
A woman I had never met (but we have many mutual friends) came by with a dinner even though she had to juggle her 6 kids to cook it and drive it across town. Sacrificial kindness.
This is very unusual and never to be expected, but it was kind, helpful and REALLY nice. A childhood friend of my late husband is a very successful man in a successful couple and they bought us the 6 plane tickets we all needed to fly home to bury Dave. They additionally gave us other funds via an account set up by a banker friend. In total, their contribution was over $10,000. We aren’t poor and there was life insurance but I was a single mom with 5 dependents (at the time) and my job only offers me part-time hours, so it was very appreciated.
It doesn’t, however, take $10,000 to be kind…I was struck by the creativity in this: on the day of the funeral, a friend bought my then-16 year old a pile of tabloid magazines (including some teen celebrity ones). We all know that this stuff is mind rotting and that was the point, she needed a DISTRACTION and this one was harmless and really cute.
The image from the Virginia funeral (we had a Montana one too) that will stick in my mind forever is Cathleen and Vicky dumpster diving for my daughters retainers. Someone had thrown them away by accident (they were on a plate that wasn’t supposed to be trashed) and by the time we missed them the trash was in a dumpster. My friends were so sensitive to meeting our needs (whatever they were) that their fancy-lady-selves just dove right in. Wouldn’t that make you feel loved?
Please share the kindest thing done for you in your grief…
Here is my recent column on Catholicstand.com…I didnt pick the word “young” to descrbe me, the site editors did…
A Young Widow on How to Treat Young Widows
In my work with grieving families, much of the coaching I do is to help young grieving parents communicate their needs to their friends/relatives so that those close to them, who may not have any previous experience with perinatal death, can be supportive and nurturing rather than adding to the burdens of the grieving.
Then, in my own life I became a rare statistic, one of the 1.8% of women in their 40′s living as widows. My research showed that 2.6% of 40-something women are widowed, 1.8% not remarried. Slightly over 1% of men the same age are widowers with less than 1% not remarried.
Before I go any further, please let me recognize that (especially in Catholic life and tradition) there are those of all ages who choose to maintain devotion to their marriage and/or experience an evolution in vocation towards consecrated life in (or out of) a community after the death of a spouse. My own grandmother chose to consider herself a married woman after 47 years with my grandfather and scoffed at any suggestions to the contrary. I often wondered if my husband might consider the priesthood if I were to die while he was young enough for that to be an option. As much as I respect this option, I want to focus on those of us who continue to consider ourselves as marriage-minded after spousal death. You may have one or two peers navigating the choppy waters as a new widow/er.
A safe general rule in grief is to let the griever set the tone for interactions. If the griever is in a calm, more content moment, share that moment with her. If he is weepy and taken over by a wave of sadness, stay steady with him but don’t try to fix him like a broken toy. I would have been insulted early in my grief if had anyone suggested that a future relationship would improve my happiness; it would have sounded to me like that person was saying my husband was disposable. However, as I healed and began to look up and past the clouds of the moment, I began to have hope for the future and that included the possibility that I might eventually love again, but I needed to get to that place on my own.
What has genuinely surprised me (and the main reason I wanted to write on this topic) is the overbearing sense of expectations I perceive coming from others and how it really hurt me and complicated my healing. I urge you not to do this to others in my circumstance.
I have heard it said that a marriage is like a house with no windows. No matter how close you get, you can never look in. It’s probably a good thing that I can’t discern if it is harder to reflect on the good memories or the bad ones because I wouldn’t share that information anyway. The movie We Bought a Zoo tried to show the pain of young spousal death and I was amused watching it because it didn’t even come close. How a spouse processes the deep grief of loss is profound and extreme and primitive and very, very private. Trust the griever. Trust that she did the hard work whether it took her 5 years or 6 months to face down that dragon. Trust also that he doesn’t owe you any explanations about it.
Living in a situation where gutting pain lurks in every drawer and around every corner is surreal. Imagine how hard it was for me to try to find hope and begin to socialize again, only to be met with the too common reaction — people asking how long it had been since my husbands death.
I eventually realized that my whole life I have heard people make snarky, overreaching, and nosy comments on this subject (alas, it is a societal oddity), but it never hit home because I never imagined myself in this situation.
I always felt I was a really good wife. I was a military spouse for 18 of our 26 years of marriage, with the unavoidable deployments, moves, and hardships that come with it. I was faithful, loyal and devoted. But when people impose their expectations on me, it’s as if they expect me to prove my devotion to my husband all over again, as if none of our life together counted.
While we need to be cautious and protective of widow/ers who may be so fragile and vulnerable that they could be easily victimized (emotionally, financially or otherwise), I have come to see comments like, “What do you mean she is dating? Its only been ____ since her husband died!” as extraordinarily harsh to the point of cruelty. How long does a person have to be isolated to prove they were hurt when a spouse died? Do people who say that grasp the magnitude of the inference they are making about the bereaved who are trying to heal and create a life for themselves? I was even afraid to write this column lest someone–anyone–accuse me of not being devoted enough.
So why did I write it?
I wrote it because this is an ideal topic for a Catholic column. Our societal stupidity on this subject is really contrary to our faith teaching, and if we apply actual teachings to this we can nurture hurting people and do better than our society teaches us to do.
The vow we take is “until death do us part.” Let grieving widows and widowers set their own time table without dumping extra expectations on them. The widow/ers I have known who remarried fastest were the ones with the best marriages. Their willingness to consider another love was a witness to the positive aspects of marriage.
Having your spouse go to Purgatory is a huge chance to use intercessory prayer as a tool for his or her well-being and we can ask for ask for our spouses intercession also.
I had the chance to demonstrate the fact that I really believed what I said I believed. My husband’s death gave me a chance to witness to others. As much as I agonized over the sudden and unchangeable absence of my life partner, I had the opportunity to rejoice that he died in a state of active and earnest living of his Catholic faith. I picked the readings for his funeral knowing that I had a captive audience, the 6th chapter of John and 1 Thessalonians 4:13. “We do not want you to be unaware, brothers, about those who have fallen asleep, so that you may not grieve like the rest, who have no hope.”
Last, allow me to express gratitude to my (forever) Mother-in-law, the same one from the We Can’t all be Good Cooks column (the “If you are hungry the kitchen is over there” column here). She was incredibly gracious and kind the day I called to tell her that I had become reacquainted with a male friend from childhood who was kind to me and respectful of her son’s former place in my life.
Her reaction: “Ever since he died, I dreamed of this day.”
Her only question: “Will he protect you?”
What a lovely, selfless, and hopeful way to react. Again we can learn from her.
Once upon a time there was a little girl who rode the bus to school in Minnesota. There was a stop in front of the small horse ranch on her road where they would get this boy who always had muddy boots. She didn’t talk to the muddy boot boy very often but listened to his stories of his family and horses.
After 6th grade she moved to Maryland and didnt really keep in contact with friends from that part of her childhood since long distance calls were still expensive in those days. One rare exception was a call with a friend about the time they all graduated from High School and the girl learned of the plans made by her old friends. “John Ziegler went to the Air Force Academy” which stuck in the ears of the girl since her dad had gone there…she didn’t expect that the boy with the muddy boots would have made such a leap but was glad for him.
A few years later, she went to a football game for the hometown Naval Academy and heard a familiar name mentioned by the game announcer… “that was Ziegler on the tackle for Air Force” Ziegler? Muddy boots Ziegler? The printed program revealed that the muddy boots boy had grown into quite a gentleman and the young girl lost no time in passing a note to him via a Major on the sidelines of the visiting team. He didnt think much of the note until he returned to Colorado and learned the note had come from a girl who used to live in his home town. Letters and calls followed for a while.
Their brief time of long-distance dating ended when the distance became a burden and lives went in separate directions. He married and lived on the Isle of Crete for a time; a daughter enriched his life. The girl married a Naval Academy fellow; babies, moves and even a grand baby followed after his retirement. It was a life of love and devotion cut short by unexpected death that left in its wake such a sadness. The girl (a grown woman by now) steeled herself to finish raising her children alone in the suburbs south of Washington DC.
Her father was scared of the crazy people she might meet online and racked his brain to think of nice people she could meet instead…the only person he could think of was that nice football player from his Alma Mater.
The alumni magazine listed a child next to his name but no wife…he was now a Colonel and lived in the suburbs south of Washington DC. Internet stalking skills that were not well developed in the 70something great grand father but did result in an awkward call to the Colonel asking him of his status. “Are you married? Do you remember my daughter?” The Col was single and had been for quite some time. He wasted no time in calling her…she was shocked but pleased to hear his voice…38 years after first hearing it on the school bus. 1000 miles from where they met, they found each other 35 miles apart on streets with the same name.
The girl from the bus became the cutest widowed grandmother that the Colonel had ever seen. He no longer had muddy boots or wore his football helmet – both having been replaced by a “Special Agent” badge and a full career. The Colonel formally asked the father permission to date his daughter (maybe a first for a grandmother). So when you ask me where I met my beau, you wont hear “Match.com” but rather a story of a (cold) school bus in Minnesota.
I broke my arm soon after we started dating. I had to have surgery on the bone and the Colonel sat in the Recovery Room for me for 4 hours…he got me my medicine and didn’t get mad when I threw up in his Lexus.
I wrote our 6th grade teacher once I realized that we had both been at her wedding..was there a photo with both of us in it? A picture of the whole class arrived in my mailbox a few weeks later. He is the taller boy with the quilt pattern western shirt on…Im the short girl in the pigtails acting silly in the front. (If his memory is correct, he gave the teacher live chickens as a wedding gift. That sounds like something people would do in 1876 rather than 1976 but I think its cute.)
Here is us 37 years later
UPDATE: In Sept of 2013, we went to Turkey which included an excursion to Ephesus. We went to the house where St. John made a home for Mary after Jesus ascended to Heaven…in that stone house, my dear one proposed. I was so shocked I literally stumbled around in a stupor for the rest of the day.
After we got engaged, we got on a yacht and sailed the Aegean Sea for 7 days (4 couples joined together to charter the yacht and there was a cook which was a good idea if you knew me and my incapacity to cook even in a fully equipped land based kitchen, let alone on a boat)
If you are thinking “wow this is getting good”, you are right.
In July of 2015, we married at the Cadet Chapel of the US Air Force Academy..the service was performed by a pastor who knew well his late father.
In youth we often perceive experiences in the moment and are fully sure that we will never see them differently than we do right then. And yet, as I have lived and had deeper (and sometimes harder) experiences, I have come to see that how things are in one moment may not be how I will always see them.
When I meet a family who has received a life limiting diagnosis for their baby, I walk a tight-rope of respecting how they feel right at this minute with the sage wisdom that their perceptions of the whole experience will evolve greatly over time.
Below is a guest post from Julie who I came to know in the course of preparing for the birth of her child …her story became a story that we shared and I think there is much to learn in it…
In May 2008
My husband and I were presented with the words: “If it were my wife, I would terminate. It’s going to be a long and complicated pregnancy with nothing fruitful in the end.” These words were spoken by our Perinatologist the day we received the fatal diagnosis for our daughter Robin Elizabeth. These words have been forever etched in my mind.
Our sweet daughter, our third child, would not be capable of living outside of the womb. For the next four months, we would carry Robin fully understanding that she may only live for a few minutes after birth. Denial, heartache, anger, sadness, anxiety, and trepidation – just a few of the emotions that would consume us. Through all of this, my husband was a rock. I drew strength from him and the fact that he knew the trial we were experiencing was something we could weather. Together we were determined to honor our daughter. We took a trip to the ocean so she could hear the sound of waves, played music that would make her kick, tried our best to explain what was happening to our older children, all in the midst of deep grief.
Thankfully, our Obstetrician was terrific about supporting us and respecting our wishes. He referred us to our local hospital that offered a system of support often called “Perinatal Hospice.” Nurse Tammy assisted us in walking the precarious steps over the months that followed. It was difficult to imagine that I could ever feel better about this experience, although I vividly remember Tammy helping me realize something to which I would cling. Our other children would know how much we loved them by bearing witness to the love we were showing this baby. They would forever know that had they been the child with a fatal diagnosis, we would have loved and respected their lives as well.
In September 2008
Robin was born. After so many months of waiting, Robin greeted us with incredibly red lips, bright blue eyes, and the sweetest cleft in her chin. In that moment, all of our sadness melted. We were parents holding their newborn daughter. I often like to say that Robin was loved, hugged, and cradled for the entire 41 minutes that she was alive. Not very many people can say that they were cherished and surrounded by love for their entire lives.
Tammy had coordinated specific aspects of our care to allow our time with Robin to be spent the way we desired. She spoke of “sacred parenting” to “describe the time a couple has with a dying newborn.” Tammy helped to provide a place where we could be parents to Robin in the precious time we had, including minimal interruptions from hospital staff.
Four years pass…
In time, we move through life; our intense grief, a lot of healing, the growth and strength of a marriage, the anxiety of a subsequent pregnancy, the healthy birth of our fourth child, and a lot of love and support. I began to mentor other mothers in these situations and consulted back to Tammy as a Parent Advocate. She became a dear friend.
In September 2012.
Tammy had been networking and teaching about Perinatal Hospice and had come to know Akiko, a Nurse Researcher and Midwife from Japan who was working toward introducing the Perinatal Hospice care model to Japan. Akiko accepted the invitation to do a site visit at our local hospital and Tammy asked if I would be interested in joining them, sharing Robin’s story, and “tagging along for lunch.” I jumped at the opportunity!
On September 6, 2012
I was honored to meet with Akiko and her translator. I brought with me a beautiful scrapbook filled with pictures and stories of Robin’s birth. Both women were rapt with attention as they asked questions, took notes, and listened to a mother talk about her daughter. The beautiful photos and mementos from our time with Robin tell her story well.
It turns out that Akiko’s visit was quite the big deal and “lunch” was actually a reception where administration from our hospital and all areas of the Women’s Services Teams were represented. I didn’t expect to say a word until attention was focused on me and I was asked about my experience there. It turned into a Q & A where I was again able to share Robin’s beautiful story. I was able to directly explain to my hospital’s leadership how much the compassionate care we received helped in our family’s healing. What an incredible honor and what a spectacular tribute to the sweet life of our child.
On September 7, 2012
The following day I was forwarded an email that completely rocked me. Tammy received an email from Akiko thanking her for the time and effort it took to organize such a great meeting. The first line of this email sent me reeling: “Dear Tammy, Thank you very much for making my visit so fruitful.” I immediately had tears in my eyes. We had stepped out in faith that God had SOME purpose in our child’s life and our suffering. We had been told by our Perinatologist that our daughter would never be “fruitful,” but here was someone from across the globe who was recognizing the value in her life. This was not at all what I had expected for God’s plan. I never imagined that Robin’s story would reach beyond our family and friends; but now it was reaching around the world.
On September 8, 2012
The story is already so powerful yet God was not done. The very next day, I received a call from a mutual friend telling me that Tammy’s husband had died very suddenly in their home. I got food and went directly to her house where I was the first friend to arrive. The woman who was there for me when I needed her was now consumed by grief and sadness and in need herself. She met me at the door and I tended to her as she had tended to my tears, confusion, and sadness. In Tammy’s words, “In God’s economy we often take turns in service and strength.”
It is March 2013.
Four and a half years have passed since Robin was born. I can’t imagine how many times I must have told the incredible story of our daughter’s life. Because of her, we witnessed the blessings of overwhelming love and support from dear family and friends. Because of her, I have helped to mentor other mothers who are carrying to term. Because of her, hospital staff in Japan will receive practical ideas that will help care for families wanting to honor their children and aid in their road to healing. Because of her, I befriended a remarkable woman named Tammy Ruiz, and in her time of need, I was able to try to return the compassionate care that had been bestowed upon my family and me.
If you look up the definition of “fruitful” in the dictionary, you find: “Producing good or helpful results; productive.”
I dare to say that our little 41-minute old has produced some pretty incredible results and helped an awful lot of people. Sounds pretty fruitful to me.
My husband’s death was unexpected, shocking and sad. He didn’t feel well on Friday evening and was gone by Saturday morning. I was as shocked as you might guess yet I found myself coping.
I am certain that my faith was central in my survival and coping…I really believed with every fiber of my being that he was in Heaven and he was happier now than he had ever been before. I was soothed that I knew I was a great wife and in our Faith Tradition (Catholicism) the primary goal of Marriage is to get one’s spouse to Heaven – and to the best of my understanding (with a stop over in Purgatory) I had succeeded.
I hated so many of the tasks I had to do (one of which I haven’t completed). I was paralyzed by with angst over what to do with his soap, shampoo, toothbrush, military uniforms, and pile of dirty laundry. I found a proper disposition for all of these items except the laundry (it’s still in my closet). I hated ordering checks without his name. I hated having his name removed from our cars. I hated closing his business and having his cell phone deactivated. With a wild passion I hated deleting his name from my phone (I got up the morning of his funeral and got a momentary burst of courage and did it). I hated catching myself speaking of him in the present tense or saying “we” when there really was no “we” at all…but mostly I hate seeing old couples together – the thing I thought I would have and don’t….and yet I persevered even in these hated tasks.
I did better with other things…like making decisions. I had to make about 200 quick decisions and I think I did a fine job. I redecorated his office and took it for mine which I argue was a good idea. I reconfigured some financial things which seem to have worked out fine (except when I told the shrew at the bank that buying Dave’s casket was more pleasant than dealing with her). I contracted some work on the house and had some items fixed and it all went well.
I still cry many days but I trudge through and do pretty well mostly. I am recently reminded, however, of something I said soon after he died.
“I am OK, I think, but I hope I don’t get to the 6 month point and crash”.
3 days before the 6 month mark, I did this:
Just for the record, when I said “crash” I meant it as a metaphor.
(Do you hear that Universe? METAPHOR!)
He bought me this car and I think he was really proud of seeing me in it. A guy at the Mercedes dealership said “It takes a special driver to get the most from that car” and he responded “My wife is not that person” haha !
Everyone involved in the crash walked away and I have a newfound fondness for airbags and the capacity for my car to protect soft human flesh while allowing steel to crumple up. I am terribly unsettled that a split second of distraction (NOT caused by a phone, I was neither talking nor texting) could have such awful consequences and I am reminded of the random nature of life and death. Im reading a book about St Ignatius of Loyola and he said that we shouldn’t be afraid of bad things happening…they WILL happen, but we don’t need to be afraid.