May the road rise up to meet you. May the wind always be at your back.
May the sun shine warm upon your face, and rains fall soft upon your fields.
And until we meet again, May God hold you in the palm of His hand.
-Irish Blessing

Monday, December 30, 2013

I Couldn't Outrun the Holiday Blues

We just returned from our first big family vacation - EVER.  The most we've ever done is visit family.  This year we took our own family to visit magical places.  The whole process was time consuming.  Packing for four kids, one still in diapers, and myself for two different locales with specific clothing and footwear needs was tricky.  Plus, we spent two whole days getting to and from our destination which is also tricky with four young children, one still in diapers.

So where did we go?  Disney World Magic Kingdom, the beach and Sea World.  It was an amazing vacation filled with unforgettable memories and, at times, overwhelming sadness.  My boys were never far from memory.  Our vacation timing, right over Christmas, was not a coincidence.  Christmas has always been special to my husband and I since we married just before Christmas twelve years ago.  We spent part of our honeymoon at Disney World and the beach.  I have long wanted to share that trip with my children.  

But there was a hidden agenda to the trip and the timing.  Part of it was the above and part was just escaping what has some years become sheer madness at the holidays with family, presents, lists, cooking, etc.  I needed a year off, some breathing space.  Some space to grieve too.  One of our favorite things to do at Christmastime is to visit our sons' graves on Christmas Eve to deliver their presents and see their sweet little Christmas tree lit up in the snow.  With all of the other goings on the time left for that special trip has become less and less and things just weren't on the right track.  

So we packed up and went to Florida, just us and our four little ones.  I bought Wyatt and Eli Mickey Mouse ears with their names embroidered on the back and barely managed to avoid the awkward conversation about who Wyatt & Eli were with the store clerk.  I have a pair of ears myself from my first trip to Disneyland and a Minnie pair from my first trip to Disney World and we purchased each of the girls their own so it was very important for me to get the boys their ears since this would have been their first trip too.  I wrote their names in the sand at the beach and at Sea World we got them a Shamu and dolphin for their graves this Christmas.  

Those aren't the moments that got me though.  Grief was complicated.  I almost lost it on the airplane with my extremely fussy 20 month old exhausted and sleeping on my lap.  When Cinderella's castle was lit with hundreds and maybe thousands of Christmas lights so it sparkled from bottom to top my eyes sparkled too.  

I learned yet another lesson.  It doesn't matter where I am, how happy or distracted, how sad or uncomfortable, how busy or how stressed, the holidays will always have the same effect on me and my boys will always be extra close to my heart in those days.  

Santa, you can commit this wish to memory because it will NEVER change:  all I want for Christmas is my whole family to be together.  My second oldest told me out of the blue that she wished Santa would bring something for Wyatt and Eli.  She remembered this wish when we arrived home late Christmas evening and she looked at the two empty stockings.  If only.

Friday, December 6, 2013

Extraordinariness Oversimplified

I am moved this morning to remember Nelson Mandela and his undying legacy.  Mr. Mandela's time on earth has passed but time will not pass him by.  Mr. Mandela's words, actions and legacy will live on in eternity.  He was an extraordinary man who accomplished extraordinary things in the most understated of ways and that to me is true greatness.   Invictus - Latin for "unconquered" and inspiration and motivation in my life every day.


Out of the night that covers me,
      Black as the pit from pole to pole,
I thank whatever gods may be
      For my unconquerable soul.

In the fell clutch of circumstance
      I have not winced nor cried aloud.
Under the bludgeonings of chance
      My head is bloody, but unbowed.

Beyond this place of wrath and tears
      Looms but the Horror of the shade,
And yet the menace of the years
      Finds and shall find me unafraid.

It matters not how strait the gate,
      How charged with punishments the scroll,
I am the master of my fate,
      I am the captain of my soul.

Thursday, November 14, 2013

Cuts Like a Knife

My 7 year old daughter is currently studying the past, present and history in social studies.  She brought home an assignment the other day to do a personal timeline.  We were discussing important things that have happened in her life and I pointed out she had missed the birth of her siblings (3 have been born since she was).  So she went back to work at the timeline and showed it to me later.  She had included the birth of her two younger sisters but Eli was missing from the timeline.  I pointed out where he should be and asked her if she wanted to include him.  She said "probably not".

In that split second my insides crumpled like newspaper.  Outside, I hope, my face registered nothing unusual.  Casually I asked "why not?"  to which she explained that earlier in the fall during her student of the week time she had explained she had two brothers in addition to her three sisters.  The children apparently questioned her about her brothers and she told them her brothers didn't have kidneys and they couldn't breathe when they were born.  Which is about as good of an explanation as any.  But then she said they made fun of her.  I asked how and she said they asked why her mom didn't just have another girl.

I'm not exactly sure what was said and how it was said but whatever happened made an impact on her and not one she cared to repeat.

While I'm sad that this happened to her, I can't blame her for wanting to only include her living siblings.  How many times have I only included my living children when asked by strangers or acquaintances?  I don't always feel like explaining or dealing with the looks on their faces or whatever else accompanies what I tell them.  It has nothing to do with Eli and Wyatt but everything to do with me.  They will always be my children, ever in my heart and my mind, but they are also very sacred to me and sometimes sharing them doesn't feel as sacred as I want so I selfishly keep them to myself.  I can't blame my daughter for reacting in a similar way.

So I thanked her for telling her class about Wyatt and Eli and left it alone.  It hasn't left me alone quite yet.

Thursday, October 31, 2013

When the Hammer Falls Either Run or Duck

I recently wrote about running my first 10k under extremely challenging weather conditions.  The physical and mental strength and stamina I needed to run for one hour under those circumstances were significant to say the least.  It didn't occur to me until I put that into written words how my life and personal circumstances fits into that same mindset right now.

I took on a new and very demanding volunteer opportunity at the end of last spring.  Since then I've given it my all at the expense of my mental well being and so much time with my family.  It is a good cause and one I would not continue with if I didn't strongly believe in its worth.  Regardless it's taking a toll.  I feel like it's just one catastrophe to the next and since I am the leader I end up having to clean up all the messes while trying to balance spinning plates on my head and both hands and sometimes a knee as well.   I would never cut it in the circus.  Too many broken plates.

Power of a written word is amazing.  Day after day I feel like throwing in the towel, or rather, just taking all of these plates that I'm spinning and chucking them as hard as I possibly can into a brick wall.  The satisfaction of seeing them shatter would be worth it.  At least that's what I tell myself.  For a few minutes or maybe even an hour that much would be true.  But then I starting thinking about that 10k.  It was a painful experience but the feelings that hit me when I crossed that finish line were so worth it.  As an aside, it's awfully creepy to finish a 10k not anywhere near last place and have no one but the timer at the finish line and he was sitting in a pickup truck.  Told you the weather was Bad that day!

I finished.  I persevered and no one can take that away from me.  I built a little bit onto myself that day.  I pushed myself farther than I thought I could go.  Better yet, I didn't push myself to the brink which means I have even more to give.  Afterwards I was very cold and very wet but I felt good.   I placed better than expected but in all honesty very few people actually ran the race and I was just slightly off my goal time which was awesome considering how freaking windy it was that day and that I ran the last three miles straight into that 45mph wind.  My volunteer position goes until the end of this spring which leaves me with many more months and probably many more catastrophes.  A year is a lot longer than an hour to spend under that kind of stress.  But in reality I've been through much worse.  I've carried two pregnancies that ended with me leaving a hospital without my son and at the cemetery so I just don't think this can compare to that in terms of badness.  Not much can.  Now that I've put a little more perspective in this situation I just need to keep telling myself I've been through worse and I can get through this too.  In fact, I may even feel good when it's over.  I can hope, right?

Friday, October 25, 2013

There Are Lessons All Around Us

My five year old just finished watching Disney's The Lion King.  I tuned in when an adult Simba returned to the Pridelands and faced his Uncle Scar for the first time since he left as a child because he believed he was responsible for his father Mufasa's death.  Mufasa believes he will get rid of Simba and confesses that it was he, not Simba, who killed Mufasa.

That revelation after so many years of self doubt, sadness and guilt, had to have been mind blowing for Simba.   He spent many years away from his home and away from his family and most importantly, not being his true self, because he lived in the shadow of all of those complicated emotions.  I get that he's a cartoon lion, but come on, there's a lesson in there for all of us.  Especially us.  Carrying guilt in our hearts over the loss of our little ones can only stand in the way of us being able to be our true selves.  It can separate us from family, friends and ourselves.  Guilt is a corrosive emotion which can literally change us from the inside out.

To quote the great Pumba, "[Y]ou got to put your behind in your past" er, I guess I'm looking for Timon's correction, "You gotta put your past behind you".  That doesn't mean forgetting, it doesn't mean completely letting go.  Hold on to your little ones, always keep them close.  But it does mean doing what we can to recognize any guilt we carry and to get out from under it's shadow.

Saturday, October 19, 2013

When I Realized I Am Somewhat Healed

As I'm sure many of you know, this past Tuesday, October 15th, was Pregnancy and Infant Loss Remembrance Day.  I knew that too but I didn't actually realize it until after 10pm that evening and even then I didn't come to that realization on my own.  I happened to be reading a book with the local evening news on and bam! there was mention of pregnancy and infant loss remembrance.  It got my attention immediately and just as quickly I felt like a schmutz.  Here the whole day had passed and I did nothing.

It's okay, judge me.  I know what an important day this is to the community of us who have lost pregnancies and/or infants.  I never dreamed it would be possible to forget this day.  While wondering how this could have happened, I realized that for me it is a signal that I've healed - some.  I no longer want or need to announce my loss to the world which was a big part of my participation in October 15th in years past.  I wanted everyone and anyone to know how much I had suffered.  I needed to have some kind of explanation out there for how freakish I felt inside.  As the days, months and years have passed I have assimilated that suffering into myself and at some point unknown to me it just became a non-defining part of me.  I no longer define myself as bereaving mother though I know I will be one until the day I die.  It is another hat that I wear underneath all of my others.  It's a hat that I can't take off but one that I also don't show off.  It's something I hold close to my heart like the other weekend when I ran my first 10k and woke up to a day of snow mixed with rain and 40mph+ wind gusts and instead of seeking refuge in my warm, comfortable home I went to that race and I ran it because I knew no matter how difficult it would be physically that I have suffered so much worse in my life and I would absolutely make it through.  And I did.

I do so much for my boys now without even giving it conscious thought.  They are my rock and keep me grounded when everything else is in the air.  I just keep telling myself that I've suffered so much worse and I can get through whatever is dragging me down.  I no longer need my pink and blue ribbon but I know exactly where it is. I'm sorry October 15th, I'm sorry that you didn't get the attention you deserve from me this year.  I'm also incredibly grateful for those of you who gave it more attention that most, for those who make sure it is declared a day of remembrance, for those who place beautiful white roses and poems on all of the baby graves in my cemetery, for whoever got it on the local news that evening.  Because October 15th is about more than me, Wyatt, or Eli - it's for recognition of the pain those of us who have lost little ones carry, it's about letting others know how and why they can help us bear that pain, and it's about letting anyone who has carried that pain know that it's okay to recognize the pain and that it's never too late.  So I may be late, but to all those who have lost pregnancies or infants, God bless you, your families and your little ones.

Wednesday, October 9, 2013

How to Keep Swallowing That Lump In Your Throat

My post on grief relapse somehow didn't include one extremely important occurrence which I somehow forgot...the first Potter baby to survive.  I've posted about this before and since it has received media attention because her mother is a member of Congress.  It has caused hurt and controversy and of course, is a beacon of hope for those of us who have walked and are walking through the darkness of infant loss due to Potter's.  Many suggest that little Abigail can't have true Potter's, that perhaps there is something that the public doesn't know, tissue that was not reported on, etc.  Others believe it's a true miracle.  Even the congresswoman herself touts it as a miracle.  

I understand that point of view completely and if her baby had been my first Potter's baby I would probably say very similar things.  But my reality is my own headstone with two little coffins buried in between my husband and my final resting places.  So, I respectfully disagree that her daughter is a miracle.  Her daughter is the product of medical patients who were able to access medical professionals who were willing to do something that went against the grain.  Doctors who were willing to try something that appeared to be effective instead of standing behind the already delivered death sentence.  Maybe that behavior is miraculous but I don't believe it should be.  For any medical condition.  Period.  We should all have access to the best health care and to the doctors and other medical professionals who will listen to their patients, treat their patient's conditions and be willing to work with patients to achieve the best possible result in every situation.  

I digress.  This has bothered me on a very subconscious level EVERY SINGLE DAY since I first found out about it.  I don't and I can't dwell on it because there is nothing I can do to bring Wyatt and Eli back.  What I can do is spread the word and through my words encourage others to find answers and treatment.  But this all just really kills me in so many ways.  Of course I'm relapsing.  I've lost 2 sons to this condition and the most recent only 2 years ago.  Of course.

Monday, September 30, 2013


Two years later and here I sit in front of my computer typing the word "relapse".  I can't put my finger on it but I'm fairly certain that I am experiencing a relapse of grief (from which son, who knows, my guess is Eli).  It's not that I find myself staring at pictures or holding their things.  Not at all.  I suspect it from the way I feel.  The feelings of isolation, of no one understanding me, the feeling of just wanting to crawl into a shell for a while.  The tears that are constantly beneath the surface but barely spill over.

I don't know the whys and the hows for this one, I am taken completely off guard.  There are many possible triggers in my life right now so it could be any one or a combination.  I've been feeling off for weeks now but it wasn't until after I was able to have a really good cry while looking at Eli's picture (my one and only really good cry for a long long time) that I admitted what my subconscious had been thinking to myself and out loud.  I was pretty sure that the grieving process just wasn't done with me yet.  My good friend the internet was very helpful in letting me know I'm not crazy and that perhaps I didn't fully grieve after Eli's death.  That seems possible, if not likely, considering I had three young children to look after and in the grand scheme of things my life only stopped for a moment for me to grieve before I was plunged head first back into the harsh reality of daily life outside my cocoon of sadness.  I can't pinpoint any particular thing that I didn't grieve but that's the funny thing about grief I suppose, it's different for all of us in every way, shape and form.  I'm different than the first time I grieved the loss of a son so my grief was very different the second time around.

I'm writing this though to let you know that it can happen and that if it does, it's important to tell someone.  I felt ashamed that this could be happening to me so far down the road but shame doesn't solve problems, it only creates more.  I'm looking at this like a very small and untimely speed bump on my road and I will work my way over it just like I have all the others.  One of many.  One of many.

Friday, September 27, 2013

Resiliency is Not Bouncing Back

I just read a magazine article about resiliency.  Gold medal winning athletes who had faced great adversity (deaths, disease, injury in their lives) said that had they not faced those struggles they wouldn't have won their gold medals.  They also admitted that during the adversity they had the same questions as I have, the "why" as in "why is this happening (to me)?" and the "how" as in "how am I going to make it through?"

Resiliency is the ability to become strong, healthy or successful again after bad happens according to Merriam-Webster dictionary.  For physical matter it is the ability to return back to its original shape after being stretched out.  The first definition is very separate from the second.  The article went on to say that the United States military has now embraced mental resiliency training instead of just physical.  It expanded the need for resiliency to all of us as training to handle great times of stress or difficulty that will inevitably arise in our lives.  Resiliency is not just a trial by fire lesson, it can be taught and learned.  (An internet search on this topic will yield lots of great information on resiliency which I highly recommend.)

Before losing Wyatt I realize that I had no real concept of loss or the resiliency it takes to survive that loss.  I became resilient.  It was a long process but one I started emerging on the other side I realized that if I could survive losing my first and only child (at that time), I could survive pretty much anything.  It is a mantra I still cling to with double emphasis since I have now lost my only two sons.  The resilience of surviving those extremely traumatic events in my life has left me forever wounded but has also imparted many gifts.  One is confidence.  The confidence I speak of above, where I know that I have survived some of the worst things that can happen to a person and I will continue to survive and find ways to thrive through difficulty.  The words "bring it" have new meaning and intensity.  That's not to say that I don't struggle and find myself crawling through the mud.  I do.  Sometimes often.

Another of those gifts is trust.  I am, by nature, very distrusting.  I'm a type A, do-it-yourself, kind of girl.  So it is often difficult for me to trust others or trust that things will somehow work themselves out, whether for better or worse.  I just want to make what I want to happen actually happen.  I've talked about this many times.  That's one of the reasons Potter's was so very devastating to me.  Because there was NOTHING I could do at that time to make anything happen.  I've learned to take pride in my values, the things that I hold dear to me, to do the best that I can and then....let it go.  Gosh, that's so hard and a constant struggle for me.  But I'm learning.

Trust and confidence haven't made my life rosy nor have they given me rose colored glasses.  They are sources of inner strength and their voices are louder than the ones that tell me to stop when things get too hard. It's hard not to think of the great Timex phrase because I just keep on ticking no matter what comes my way.  At the end of the day my body may feel broken and my spirit weak but come next morning I will get up and do it all over again.  That is resilience.  It's not bouncing back, it may be crawling, clawing or scratching your way out of whatever darkness has its grips on you and you may not find yourself "back" in the same place you started and that's okay.  Resilience is only the ability to become strong, healthy or successful again after something bad happens and that something bad will have not only changed you but changed your view on the world around you.  Resiliency is the ability to grow and adapt over time.

Tuesday, August 27, 2013

What I Would Do With What I Know Now

Recently, I posted of the first believed survivor of Potter's Syndrome bilateral renal agenesis and now that I've had some time to digest the news I'd like to share my lay person's opinion on what I would do from her on if I ever heard the words "Potter's Syndrome" in my family again.  I emphasize I am a lay person, not a medical professional.  I'm just a mom who has carried two babies with Potter's Syndrome through to their full term births and then cradled them in my arms until their time on earth ended.

Based on precious Abigail's story here is what I would do.  I would ask for a second opinion (which I did do both times), but for the second level ultrasound I would request that my uterus by injected with saline so that the baby's anatomy could be better visualized.  Then, I would ask that a repeat ultrasound be performed one week later without saline.  At the repeat ultrasound I would ask to have my fluid levels compared with what they were the week prior after saline injection.  If it showed that some saline was retained in my uterus I would ask my doctor to perform another saline injection and repeat ultrasound to see if the saline continues to be retained and to carefully monitor my baby's growth and lung development during these weeks.  If there was progress I would request weekly saline injections as well as steriods to speed up baby's lung development as I believe the risk of premature birth would be even more increased by the saline injections.

I would print out any information I could find from John Hopkins doctors regarding Abigail's case (an official statement was released) and encourage my doctor to read it and give me a chance.  The prognosis for Potter's has traditionally been 100% fatal and now that there is a glimmer of hope I would ask the doctor to give my baby a chance for life.  I would be realistic and admit that I know it is a slim chance and I would still prepare for the absolute worst outcome and would make sure I was fully informed about all of the risks involved in the saline treatments (of which there are many, I'm sure) and I would also become fully informed as to what would happen should my baby be born alive and with functioning lungs.  I would make sure there was a medical plan in place to handle all possible anticipated outcomes.

We don't know if Abigail's survival thus far is a miracle or is something that can become a reality for many but I think that it's definitely worth our persistence with medical professionals.

Tuesday, August 6, 2013

Letting Go

I have a love/hate relationship with gardening.  I find it to be a very strong extension of the process of learning how to grieve, grieving and living with long term grief.   You see,  I live in a climate which has four very distinct seasons that are not always equal in length.  So each spring I wait for the soil to warm and then I get to see which of my perennials have made it through the winter.  Often, some of my favorites don't make it and others are unexpectedly prolific.  Plants die for no reason, die because of the season, some are expected to live short lives and others take a lickin' and keep on tickin'.  Sometimes there is just no rhyme or reason as to what goes on in my garden.  So I have to

Let Go.

Just like ten years and two months ago I listened as Wyatt's heart stopped beating and two years and five months ago I knew Eli's time on this earth would be very short.  Every fiber of my body wanted to hold on and never let go.  Yet I did.

Letting go was not just a matter of relaxing my grip.  It was a gradual process of relaxing my heart, relaxing my thoughts and letting the string unravel.  I still have that string but I don't need to cling to it to remember it's there.

My garden is my classroom.  It teaches me that I am not always the boss of things, even things that I feel are simple and well within my control.  No matter how many times I plant or replant, water, fertilize or pray, if that plant doesn't see fit to grow in the soil it won't grow.  Finding strawberry plants that I didn't plant in Wyatt's garden is proof that I am not the architect but merely a caregiver to nature's design.  My best efforts are just that, efforts to learn, grow and cultivate beauty.

Nature has been particularly cruel in my yard this year.  Wyatt's tree was ravaged by disease and was cut down.  The willow's absence has been a painfully sunny reminder of our loss this year.  Rabbits have ravaged our yard inside out it seems.  They have attacked my raised vegetable gardens and seem impervious to any deterrents.  But veggies are not enough for these furry fiends.  No, they have also stolen the beauty from my garden and kept entire flower species from blooming by chomping down the buds.  I can only hope the winter is long and food is sparse.

Yet even though so much is out of my hands and the unpredictability tends to drive me CRAZY, it is a daily comfort.  It still needs my help to thrive, even in ways that are unplanned.  I still have to work to let go enough to let go sometimes.  I've learned that sometimes letting go results in beauty growing in ways that I could never have imagined.

Tuesday, July 30, 2013

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.

Friday, July 5, 2013

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.   

Friday, June 21, 2013

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.

Tuesday, June 4, 2013

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.

Thursday, May 30, 2013

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.

Tuesday, May 21, 2013

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.

Sunday, May 12, 2013

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.

Wednesday, April 17, 2013

Does One Bad Seed Spoil the Apple?

I find myself waking to a country song repeating in my head and while I can't relate to a lot of them in many ways (though I thoroughly enjoy them nonetheless) there is one that I can extrapolate on.  Two Black Cadillacs.  Now if you know this song, you may be saying, wait a minute!  I'll put you at ease quickly - my husband has not had an affair and I have not plotted to or succeeded in killing him.  Now that we have that settled....

The lyrics say something like "[t]he preacher said he was a good man and his brother said he was a good friend but the women in the two black veils didn't bother to cry".  Of course my first thought was what a dirt bag this guy was, how could there be anything good to say about him?  But then once I started thinking a little deeper it occurred to me that perhaps he was a good friend.  If he was a father, he could have even been a good father.  Obviously he was a lousy husband and a lousy boyfriend but the question then becomes ...

    Does a bad deed, even a very bad deed, make a bad person?

I struggle with this question because my instinct says yes.  My relation to this song comes from some interpersonal relationships and judgments that I have made in those relationships based on the other parties' behaviors.  I have deemed these behaviors bad and so I have attached that label.  Once that label is stuck on, goodness gracious do I find it hard to peel back.  The fact that I have made these judgments in the first place pains me and is a different topic for perhaps a different day but I've done it so we'll move on.

Could I be wrong?  Absolutely!  Have I ever made bad choices?  Absolutely!  So why am I throwing stones?  Short answer - weeding my garden.  Wyatt and Eli have brought great introspection to my life and how I lead it as well as who I let grow in my garden.  I've come to realize that some people can act as weeds in my garden.  Their negative energy, words and actions can threaten to overtake the beauty which I carefully guard within.  I've learned that a weed is a weed and no matter how nicely you treat it, a weed will grow all over your flowers, veggies and fruit and make absolutely no apologies.  My weed removal method of choice is to pull them very slowly from the ground taking care to remove the entire root system if at all possible.  As an aside, it is also really fun to burn them with a handheld torch until they shrivel and die!

Yet all of this still leaves me speechless.  I don't have the answer.  Perhaps there is goodness.  Honestly I want there to be goodness but I have yet to find it.  So I will leave you to ponder and maybe even contribute to this discussion.  Does badness eclipse goodness?  Can they coexist?

Wednesday, April 10, 2013

Ushering in a New Period of Mourning

My littlest little girl is going to turn one next week and I find myself not only now sleeping mostly through the night but also feeling that old pull.  The one that catches my eye as I pick out our infant daughter's clothing in the morning.  Those little boy outfits that have been hanging in that same closet on the same hangers, untouched, for about nine and half years now.  The ones for my son.  The baby blue Winnie the Pooh outfit lovingly washed and hung, ready to wear.  Frankly, those outfits have done nothing but make me angry lately.  Angry because even though those outfits weren't for Wyatt, they were for Eli.  He was the son that came after Wyatt.  He was my boy.  I knew it soon after he started growing in my belly.  I knew he was a boy.  I knew it just as surely as I knew that something was wrong with him before I even walked into that ultrasound room.  What I knew then doesn't matter now.  I now know that I will never again hold another little boy from my own body and that I will forever mourn those two little boys I did get to briefly hold but that I will also forever mourn the absence of another son.  At the same time there is great peace in my heart knowing that I will not carry another child.  There is a very real possibility that we could have had another child with Potter's syndrome.  I am so thankful to have welcomed our healthy little girl one year ago.  It has been healing for all of us.  After Eli died I wrote about how heartbreaking it was to watch our three daughters love him and then have to say goodbye.  They had empty arms too.  I have now filled their arms and their hearts.  They still miss Eli and talk of him often.  We know that Baby cannot take away all that hurt but we did not expect that she would.  She just fills a different place in our hearts.

Wednesday, March 27, 2013

Staring My Demons In The Eye

I have always been a shy person and there are so many reasons for that.  In part because genetics have not been my friend.  I was sporting eyeglasses before I started school, got asthma in first grade, wore braces starting at age 11 for five years (yes 5 years!) and those braces were super awesome with rubber bands, then due to the congenitally missing teeth as a teenager I was missing two front teeth and had a super fun retainer with fake teeth which through a couple surgeries was then replaced by dental implants.  And I won't even go to my frizzy, coarse thick hair, bad skin, or abnormally long legs with a short torso (which equaled high water pants)....the list goes on.  Basically I never felt confident in my appearance nor was I given any reason to feel confident in my appearance.

I can now say that my appearance issues for the most part have resolved themselves  - even my hair (yay!) and I do feel confident in my appearance.  But inside, I'm still that teenage girl sometimes and I tend to regress to her emotional maturity.  Which means that I basically crawl inside myself socially.

This is where the demons have found their ways in.  The cracks in my facade have left them plenty of room.  The insecurities are deep and profound at times.  Wyatt and Eli's lives and deaths only intensified those feelings and urges.  During each of their pregnancies and after I delivered them I felt that my forehead had some kind of neon sign announcing that my baby would or had died.  I was sure that sadness was just seeping from my pores most days.  I didn't want people to see that, I didn't feel comfortable with many people seeing that.  My answer was to huddle in where people couldn't see that.  And each time, it took a lot of time for me to venture back out into the world.  Even then, I was so fragile, so afraid of just breaking apart.  I avoided so many social situations and find myself still doing so even two years after Eli's birth.

Until last weekend.  Through fate and a long string of fortuitous circumstances I didn't just agree but volunteered to organize and create a new spring carnival for our elementary school's pto.  Did I mention that the school has almost 700 kids?  I put over two months of blood, sweat and tears into it and had many sleepless nights wondering if it would actually happen and then if it did, whether my ship would sink or float.  Friday was that night.  But to make it happen I had to stare my demons right in the eye.  I had to put a smile on my face and look people straight in the eye, over and over and over and over that night.  Not something that is easy for me to do.  Definitely sent my flight reaction into overdrive.  But I did it!  I walked around that carnival all afternoon and evening organizing volunteers, introducing myself, talking to participants and ... I enjoyed it!  For me it's just more proof that I can get through anything, even when that self doubt creeps in.

Because of my boys I can always tell myself in a difficult situation that I have been through much much worse and I know that's true.  I know that I made it to the other side not once but twice and that most anything else is small peanuts.

Take that demons.

Monday, March 11, 2013

Two Years Flies By When Mourning a Rosebud and Raising a Rose

Today is Eli's second birthday.  In my memory he was born just yesterday.  Memories are like snapshots frozen in time.  I remember getting to the hospital, just my husband and I wearing my "lucky birthing outfit" (I've been able to wear the same outfit to the hospital all six times I gave birth).  I remember waiting for everyone else to arrive.  I remember before going to the OR everyone waited to give me a hug one by one before they filed out and left us alone once again.  I remember the excitement of knowing in just moments I would meet my little boy.  I remember pure joy at hearing his cry and knowing he was alive.  I remember my very next thought was of his impending death.  I remember crying and smiling and smiling and crying as I stroked his cheeks and nose.  I remember the soft little cries he emitted.  I remember when those cries stopped and he became still.  I remember my cries when that happened.  I remember how Eli looked in my husband's arms.   I remember the wonder of his naked little body as we bathed and dressed him.  I remember every precious moment we spent as a family of five as I watched my daughters meet their brother and snuggle with him.  I remember the anguished cries of my older two girls as they sobbed uncontrollably when they had to say goodbye.  I remember how good it felt to take pictures because I knew how invaluable each one would become.  I remember the anguished cries as I had to say goodbye.  I remember the crushing  loneliness after he left us that evening.

I've wondered how it's possible to miss someone I didn't even know so much.  I have no real memories, no words to cling to, no stories to laugh or cry about, nothing but a few items of clothing, a clip of hair and many photographs and snippets of video.  But I did know him.  He was knit in my womb.  I knew him from the moment of creation.  My body recognized a tiny bundle of cells as a human being that needed special care and attention from that moment on.  I grew to understand his waking and sleepy times, his movements and even what sounds he liked.  I knew his spirit from within and I believe he steadied my spirit.

I miss you baby boy.  Every minute of every hour of these last two years.  Happy birthday.

Thursday, February 28, 2013

Healing is a Recurring Theme

I'm Mandy, I've had six children, but only enjoy two on earth because my two precious sons died the days they were born almost eight years apart due to Potter's Syndrome bilateral renal agenesis.  This blog is my story and in telling that story for the past two years I realize that I have a recurring theme - healing.  That's because in the almost ten years - yes, ten years (which caused me to tear up when that hit home today) - since I lost my firstborn, Wyatt, I have been in the process of healing.

I'm preparing to go under the knife (dental bone grafting to help fix a lovely congenital defect on my side of the family - ugh!) today and find myself thinking a lot about healing.  My gums will close up around the graft and with the most minimal help from me and my hygiene, they will heal and hopefully grow lots of bone thereafter.  Most wounds will do that.  They just heal so long as we keep them clean and undisturbed.  Which makes me wonder if the human brain has a similar capacity.  How does our mind heal from such a damaging wound as a child's death?  Would my brain heal these wounds much easier if I would just stop sticking my finger into them?  But how can I not?  How can I not remember the days of my sons' births?  How does a time of year, outfit, flower or even a scent not remind me of moments when I carried them in my belly?  I don't know but it interests me.  The human body has a remarkable capacity for healing so it's logical to believe that the human mind does as well.

I'm a healing in progress.  Imperfect.  Broken.  But healing.

Tuesday, February 26, 2013

Something Different About a First Child

Eli's second birthday is quickly approaching and I find myself this year, for the first time in two years, not pregnant in February.  The memories of the last two years haunt me during these few weeks.  My husband's birthday and our second daughter's birthdays are also rapidly approaching so it is hard not to remember our celebrations last year and how joyous (and plump) I was compared to the year before when I was just a little less plump and a whole lot less joyous.

But the pregnancy, birth and loss of Eli was different from Wyatt's.  The knowledge of what was to pass made things easier but so did my children.  For all of my worry about what Eli's death would do to them and then when he did die, having to watch my children suffer through the same emotions that I felt, it was nothing like watching our first child, Wyatt, die, and living through the aftermath.  I now know why.  Because when Wyatt died, in a way, so did my motherhood.  I had nothing but pictures, a few clothes, blankets and stuffed animals to remember him by and to identify myself as a mother.  But without the baby those things could not be so readily displayed and I found myself visibly robbed of claiming that identity.

When Eli died I suffered through many of the same emotions and difficulties.  Some of the worst for me was my milk coming in and still looking pregnant but not having that baby to make it all worth while.  But I was still a mother to everyone else.  I had three little girls at my bedside the day I gave birth to him and every day after.  They needed me and more than they'll ever understand, I needed them.  They gave my days purpose and eventually they helped me to see the little joys again.  After Wyatt died it was just my husband and I.  But he went back to work and then it was just me alone with my grief and my wounded body.  Physically and mentally I probably healed more peacefully since I was really able to go at my own pace.  But it was so lonely and overwhelming that I ended up going back to work as soon as my doctor would let me.  We tried to fill our hearts by getting a dachshund puppy but her needs and our abilities to meet them did not quite match up so we made the gut wrenching decision to find a family who could make her happier.  That didn't exactly help my grieving process.  But neither did banging my head against a brick wall over a five pound puppy!  It just wasn't the same.  My husband gives me an identity as a wife but only my child could identify me as his mother.

So with Eli even though it was physically, mentally and spiritually exhausting to care for our children while going through a pregnancy that would end in loss and then experiencing that loss and trying to heal from giving birth via c-section, it was those three girls that saved me.  They kept me afloat and for that I am so thankful.

Tuesday, February 12, 2013

Lenten Observance

Tomorrow is Ash Wednesday or the beginning of the Lenten period in the Catholic Church.  Yesterday marks the one month countdown to Eli's second birthday.  Sunday was weekly mass.  Sunday I found myself thinking about one month from yesterday (Eli's birthday) and how appropriate it is to me that his birthday falls during Lent.  Lent to me is a heavy time.  For me, it is a time to prepare for Jesus' death and as a mother who has experienced two of her own sons' deaths I can really relate to the time and to Mary's loss as Jesus' mother.  Now, more than ever, I feel that heaviness in my heart and my bones.  And apparently I will for at least the next five years.  You see, I looked at the calendars through 2018 and Eli's birthday during each of those years, and likely for all of the following years, will always fall during Lent.

Giving up chocolate or other sweets, even television, seems so silly in light of what I gave up just two years ago.  Lent has now become an acute observance of mourning for me and there is no earthly deprivation that could hold a candle to the deprivation of my sons that I live with every day.  I would live that one day of Eli's life just one day every year if I could.

Wednesday, January 23, 2013

Nothing Places

I recently read the book "Extremely Loud and Incredibly Up Close" by Jonathan Safran Foer.  In it is a married couple with some serious love/communication issues which results in the creation of what they dub "nothing" or "something" places.  They invent these places where they can just disappear from the other person's presence.  It's an interesting thought to me, these nothing places.

With four kids and a husband in this moderately crowded sized house I can't fathom any place being a nothing place unless they were all out from under its roof.  But it would be nice sometimes to find one of those places.  A place where just for a few minutes I could be nothing, feel nothing and do nothing.  Nothingness.

I imagine that those few minutes would lead to a few minutes more and then eventually I would never leave my nothing place and that scares me.  Because nothing is really nothing.  We are meant to feel, the good and the bad, and to live, the easy and the difficult and through those things we learn and adapt and want more.  I want to be in a something place and mean something to at least someone until the day that I turn into nothing on this earth.

Wednesday, January 9, 2013

Untangling the Knots

I feel that I am just navigating a complicated web of knots lately much like an unraveled ball of yarn.  Some strings are loose and easy and others have inexplicably wound themselves into the tightest of knots.

I think it has a lot to do with number four.  More than ever, watching her grow up and move through the babyhood stages has made it crystal clear what I am missing and what I will always be missing.  When I went through this stage with number one I was so overjoyed just to have a living baby it really didn't matter as much whether she was a boy or girl and though her babyhood was bittersweet it was also elating in the celebrations of each little milestone.  With number four I know what's coming and I know what has passed.  The surprises aren't what they are with a first living child.  There is still joy and celebration but there is also a level of comfort and knowledge.  I've done this three times before so the little things don't send me into a tailspin of doubt and worry like they used to.  There's an ease to raising a fourth child and that ease has paved the way for my mind to wander down a different path.  A path on which I have at least one little boy, though hopefully both, in my life.

It probably doesn't help that Eli's birthday is just two months away.  Last year at this time I was pregnant and all of my focus went into getting this little girl here safe and sound.  I focused on a little person wriggling in my belly.  She didn't have a face, a personality, a smile, a laugh or a cry.  I couldn't make her happy or scare her or soothe her bad times away.  This year that is most of what I find myself doing and it's just too much sometimes.  I wonder how things will feel once his birthday is passed.  As my four year old says, "One, two, three, wait and see".

Tuesday, January 1, 2013

Christmas Future

Here we are into the new year, another Christmas gone.  My ninth Christmas spent missing my firstborn and only my second missing my fifthborn (if that's a word).  My emotions got the best of me this Christmas, and not in a good way.  Six stockings and four children really hit me hard.  My daughters perfectly innocent but searing questions as to why Santa didn't leave their brothers anything and how I knew their stockings were empty just killed my inside.  I left the room with a trail of tears.  We did everything like normal.  The usual hustle and bustle, the usual family busyness and the usual stress that goes along with a lot of family visiting for a short time.  We still got the boys gifts for their graves which we lovingly placed at the sites on Christmas Eve.  But it wasn't enough.  It wasn't right.  For me.

Next year will be different.  If I get my one wish we will find ourselves at the happiest place on earth and I will leave with some of the best memories ever.

But there will always be the year after and it is for those that I am seeking change.  The traditions that have been in place and that I find myself and my families clinging to desperately have to give some or give way to new traditions.  Traditions are traditions for a reason, I know.  They stand the test of time.  But I need to be able to stand through them and this year they frankly brought me to my knees.

For those of you newer to the grief that accompanies the loss of a child and specifically the shooting range full of triggers that accompanies holidays such as Christmas, I am officially nine years from my first loss and I can honestly say that ever single year since his loss I have experienced an unnamed sadness this time of year.  I have found it hard to smile, found it hard to find the joy in the season at times (not always) and found it so much different than the Christmas I remembered.  I thought hard about it this year since somehow as I find the years passing I find myself less internally flexible.  I am less willing to give myself license and space to grieve.  Another words, I am my own worst enemy.  I am telling myself its not okay to grieve, or at least grieve so much, at Christmas anymore.  That's not okay.  I have given myself permission and now taken it one step farther.

I am changing Christmas.  I am willing to create new traditions that will work for me.  Ones that respect my sadness and will hopefully help me through it much better.  I've come to the conclusion that it's just not worth it for me to continue putting on a smile just to make others happy when I am anything but happy inside.  It's not all about me and I am going to find a way to gently incorporate as much tradition into my new traditions along with a healthy infusion of honesty and let the chips fall where they may.  A few words to the big guy and the two little boys he's keeping for me can't hurt either.


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