Change is Painful

Today I read the beginning of an unfinished story which reminded me that change is painful but worthwhile.  Congresswoman Jaime Herrera Beutler delivered a baby girl, Abigail, a few weeks ago.  Her daughter is a very special little girl.  A very special little girl born with Potter's Syndrome who is still alive.  Herrera Beutler received amnioinfusion treatments weekly for five weeks and Abigail has been receiving specialized dialysis treatments.  She was born at 28 weeks but doctors say she has fully developed and functioning lungs most likely due to the amnioinfusion treatments.  Her story remains unfinished but it brings hope and pain to those of us who have been touched by Potter's.

My initial reaction was a gut wringing ache as I thought of my own sons and my questions while pregnant.  Then I thought of all of the doctors who have told us this was not possible and the hours upon hours of research I did on my own.  I appreciate that Herrera Beutler frankly admits that many doctors told her survival of her baby was not possible.  But the pain comes in that she had medical treatment and connections available to her, likely in part because of her political position (but this is strictly assumptive), that were not available to me.  I sought that same treatment for Eli but because the medical professionals I saw had no proof of it working they were either unwilling or uninterested in finding someone who would try.  Without that help, as I am sure any other "regular" person can relate, it is extremely difficult if not impossible to find that extra level of medical care and treatment.  So this story is a double edged sword to me.  It is amazingly hopeful to hear of Abigail's survival and I pray she is the first of many Potter's babies.  But at the same time it is woefully sad to realize that perhaps had more medical professionals been willing to explore this avenue of treatment that Abigail would only be one of many to have survived Potter's to this point.

This is all speculative I realize.  I don't know how Abigail's story will end and I don't know how her story will impact others.  What I do know is that change is painful but necessary.   Without bravery, hope, persistence and enormous amounts of fortitude in the face of failure, change cannot be realized.  Herrera Beutler's family, Abigail included, have already accomplished more change than they may ever realize.  I pray that this change extends far beyond medical journal articles to the lower tiers of medicine where it is desperately needed - to Potter's families.

I am missing my sons more than ever today.

Life Can Be Good

To whomever may be reading this,

I don't know much of who you are, where you've come from, what you're going through and what the future holds for you.  I only know who I am, where I've been and what I'm going through.  This blog is testament of my darkest days.  I happen to think it's pretty bad and some of the worst kind of stuff a person can go through.

It has been ten years and almost a month since I gave birth to and said goodbye to my first born child, my first son, Wyatt.  It has been two years and almost four months since I gave birth to and said goodbye to my fifth child and second son, Eli.  Life has happened in the meantime.  In those darkest months, days and hours,  it was very difficult to envision any future, nonetheless one that included laughter and happiness.  

It is from that place that I writing to you.  To let you know that life can be good.  It may not be good.  It may currently be anything but good.  But it can be good.  Time, patience, hope and love are helpful.  There is life amid death and loss.   Sometimes we have to seize it and hold on tighter than ever before.  

I never imagined my life like this.  To be in my mid 30s with a perfectly carved and polished black headstone in a cemetery with two tiny coffins holding my infant sons lying between the plots that my husband and I will share someday.  Yet I also could have never imagined the love that I felt for each of those boys while pregnant, upon their births and long long after.  I had no idea what would happen to my marriage, whether we would have more children, healthy children or happy children.  Yet I sit here today blessed with four wonderful children and a husband who is truly my best friend and most fierce love.  

If we look around us and listen to the stories of the people we meet and people we know, we will recognize survivors like ourselves.  We will hear the tragedies that others have survived and we can take hope in their lives.  Without darkness there would be no light.  Without sadness there would be no joy.  Life can be good.   

Was Going to Update...But

I routinely do a Google and a Google Scholar search for Potter's Syndrome, bilateral renal agenesis and Potter's sequence to see if there is anything remotely close to a reason as to why my sons died.  In a passing moment I thought it might be nice to update my webpage to make it more of a medical resource gateway for other families facing the Potter's Syndrome diagnosis.  To help them find the same medical information that I sought during each of my pregnancies.

So I hit the internet again yesterday and the internet hit me back - hard.  The links that I have at the bottom of my blog are (so far as I can tell) still some of the best resources available.  Because there are no answers, there is no treatment.  There is only a diagnosis, a second opinion, a decision as to how to proceed with the pregnancy and then there is time which is followed by precious moments which is then followed by a lifetime of clinging to those moments.

I would love to provide that medical information and I promise that when I do someday find something new, I will share it.  I will shout it from the rooftops.  I will never stop searching.  Until then, I realized that the best thing I can do is to talk.  To tell my story just as many others have told theirs.  When I was pregnant with Wyatt over ten years ago stories of Potter's babies on the internet were few and far between.  I felt so alone.   Things couldn't have been much more different when I was pregnant with Eli.  I found many blogs written by people who have been touched by Potter's Syndrome.  I found online support and chat groups that were only about Potter's Syndrome.  After having Wyatt I was lucky enough to have found an online support group which was really comprehensive in the people affected by infant loss that it served.  It was my lifeline for a long time after Wyatt's birth.  It was a safe place full of other people who had experienced so many different kinds of losses and were able to share those experiences and appreciate their differences and similarities.  But I missed having that intimate knowledge that comes with carrying a Potter's baby to term and then saying goodbye.  It was harder to find that connection in a sea of grief.

So here is my story.  It is as much for me as it is for you.  It is a story of hope, love, loss, grief and living.  It is not an answer or a guide, it is really just my way of making sense of the senseless.

The moments between alertness and sleep are tricky for me.  So many of my nights I have spent worried.  The last thing I have thought of before drifting off is the safety of my children, in the womb and out.  The other night I found myself re-feeling emotions from over a year ago.  (It was my nightgown's fault.  I bought the most beautiful flowing empire waist nightgown while pregnant with baby girl and because it was purchased while pregnant it tends to bring me back to that time.)  I don't know that I fully conveyed my subsequent subsequent pregnancy emotions.  By that I mean the things that my heart felt and that my brain felt after having carried two babies to term and then having them both pass away shortly after birth because of Potter's Syndrome.  The things that I felt after having carried three healthy girls in between and then being pregnant again shortly after our second Potter's loss.

Two ultrasounds showing a perfectly healthy little girl did nothing to put my mind and my heart completely at ease.  There was always a disconnect in that pregnancy.  A fear.  Fear of getting too attached and then having to say goodbye again.  Having my heart broken once was devastating but to have it unexpectedly broken twice for the same reason was shaming.  I can't quite put it into words but I felt some level of responsibility for what happened.  Those feelings definitely permeated my pregnancy with our littlest girl.

She is a wonderful addition to our family but she has turned our already upside down lives topsy turvy.  Her first year has been frought with tears, hers mostly but mine too.  She was not a very happy baby, absolutely attached to her mommy and pretty demanding.  Add to that exclusively nursed and would not take a bottle.  Let's put it this way.  Every single smile she gave me was a precious moment because there were not many.  Our first daughter was extremely fussy and demanding but this little one and her inability to be semi-pleasant really pushed our limits.  She has just reinforced the laws of nature which I have become quite familiar with.  That I can't control anything in nature but myself and my reactions to the world around me.  I couldn't stop Wyatt and Eli from dying and I can't shape the personalities of my living children.  But I can choose how to react to them.  Little baby has changed much over the last year.  She now smiles freely and even (gasp) giggles!  She loves to play games and be silly and she is such a sponge.  I can't help but feel my heart go all gooey when I hear the word "mama".  I chose not to give up on her, I chose to smile even after screaming into a pillow.  I sang, I read and I kept at it day after day even when that day passed without a smile, a laugh or even a glimmer of hope with her.

She's proof that I don't always get what I deserve.  I mean, after losing two children and just losing one of those children, I thought perhaps I might deserve a baby infused with joy, a baby that would have caught some of her brother's spirit as she breathed her first breath.  Maybe she did, but not in the way I imagined.  She's proof of the ferociousness of nature and the relentlessness of hope.  She is one more testament to my strength and determination and perhaps more importantly, proof of my healing broken heart.

I Think He (figureatively) Wept Too

It is officially done.  The stump is ground and the mulch has been scattered.  Wyatt's Willow is no more.  I have carefully replaced his garden decorations and cautiously unburied the plants which were just starting to reawaken after a long cold spring.  I hope they all will come back to us but it's too early to tell.  Hope extends now to the new tree, Wyatt's Prairie Reflections Laurel Willow.  So named because the leaves are supposed to glimmer like mirrors in the sunshine.  Our newly planted willow is a bit bare right now so that much remains to be seen.  It feels good to have something different, yet special, in the ground.

My husband confided that he also felt relieved to have another tree in that garden.  He spent many hours out there cutting the tree down himself and chopping the trunk into manageable pieces.  He cut off two special pieces which are now drying out for us to keep as remembrances.  Silly maybe, but not to me.  That tree was supposed to outlive me as I have outlived Wyatt and while I have no ill feelings toward it there are a lot of complex emotions.  The tree is what tied me to this house.  It was planted less than two months after we moved in and only three months after Wyatt died.  It was a great period of transition.  I had my first baby.  I buried my first baby.  I bought my first house and moved in.  I began my career after finishing school.  I hadn't even been married two years.  That tree grounded me to a place, to a point in time.  It felt good to know that I wasn't the only one grounded by that willow.  That I'm not the only one who will miss it's rough bark and weeping canopy that just barely tickled the ground when left untrimmed.  It's almost painful to look at that area of the yard from my kitchen window.

Weeping for Wyatt's Willow

Nature has seen in its infinite wisdom to remind me that nothing is permanent, not even when it is carefully nurtured and unconditionally loved.  It is a lesson I am not unfamiliar with.

Wyatt's Willow, which is just shy of ten years old, as is my boy, has been reduced to a small stump in our backyard.  The last few years have been difficult for the willow.  It suffered sun damage, bug infestation as a result of the damage which could not heal and a final insult - woodpeckers.  My husband wanted to just cut it down but I insisted that an arborist examine the tree and make an education determination as to the poor willow's fate.  My husband was right, our willow was too damaged to stand any longer.  We risked having it fall towards our house in a wind storm and that was just unacceptable.  So now it is gone.  We are only waiting to have the stump grinded out and then it will only exist in my memory and photographs.  Just like Wyatt.  Ugh.  

Of course this would happen just weeks before Wyatt's 10th birthday.  Of course my hormones are all wonky from being in the weaning process for our littlest girl.  Of course Eli's little pee gee hydrangea tree had died last spring (as an aside, his new hydrangea tree, quick fire I believe, is showing many signs of life thankfully).  I'm left throwing my hands in the air and my fate to the wind.  These trees and their gravestones are what I have left to care for.  The gravestones are inanimate objects but the trees, the trees, they change and grow and show awesome beauty and strength throughout the year.  They are what I really treasure.  

To watch Wyatt's tree come down after ten years has been very sad and frankly, something I have pushed to a far away place in my mind.  The decision of what to do next has also been very difficult and sad.  Wyatt's weeping willow was just too perfect.  A big beautiful weeping tree to represent our tears shed for Wyatt.  Due to the tree's health issues we don't want to plant another weeping willow and then take a chance that another ten or so years down the road we will have to say goodbye to that one too.  So we've had to choose another type of tree and this decision has been far less emotional and much more rational.  There are hardiness, pest and disease considerations which take away a lot of the "specialness" to me.  But, just like saying goodbye to Wyatt on a rainy morning almost ten years ago, we have no other choice.

Those Old Gentlemen Made Me Cry

A couple of weeks ago I found myself watching an episode of the Dust Bowl by Ken Burns on PBS.  Having not been around during the Dust Bowl I found it sadly fascinating.  But no more so than when they interviewed individuals who had been around during the Dust Bowl.  These men and women were just children during the Dust Bowl so their perceptions and recollections are very pure and emotional.  Like the older gentleman who recalled his mother going into labor after a dust storm blew through.  She gave birth to twins and it sounded like they were premature.  The gentleman teared up as he recalled the doctor telling his mother that there was nothing he could do to save the little boys.  His tale of how they were buried together in makeshift surroundings made tears run down my own face.  Different story, same result, as another older gentleman told of his family of eight children and how the youngest two, twins, consisted of one boy and one girl.  The only girl of the eight children.  He recalled how she was so adored by the entire family, and clearly by him.  Then he told of how when she was only two years old she got dust pneumonia and became gravely ill.  She had called for him before all others but there was nothing that could be done and she died in their house.  This particular episode recalled the Dust Bowl in the late 1920s which is eighty or so years ago for these men.  Eighty years had not dimmed their sharp recollections of siblings they knew for so brief a time nor did they dim how affected these men were by the absence of those siblings for so many years.  I cried and I thought how amazing and amazingly sad it was that after all of those long years and the many intervening events which occurred in their lives up to that point, that talking about and recollecting their little brothers and sister was still so profound.  I thought of my own daughters and their brothers.  Words are only part of those stories, the tears said everything I needed to know.