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.

Relapse

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.

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.

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.

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.

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.