Between the Shadow and the Soul

I thought today would go a lot smoother.  Actually I forgot about it until this morning. Then it hit me.  And stuck with me all day.  Creeping on the edges of my brain, keeping me on the verge of a panic all day.  The due date for Elizabeth (my daughter named her, and since it’s my late Nana’s name I certainly had no objections) didn’t hit me as hard. I don’t know why. Maybe because they’re piling up? Maybe because I know there is another “due day” to come- where nothing is due but disappointment, emptiness and grief?  Maybe because there are babies due all around me, all around my date.  Will I be able to look at them and not think of mine?  Half the time I feel like screaming.  Telling them all.  But tell them what? That my ghost of a child would be here too?  It’s insane.  This one didn’t last long enough to garner a name, and for that I feel awful as well.  She’s a whisper. A glimmer.  Hope. Her name is Hope.

I do not love you as if you were salt-rose, or topaz,
or the arrow of carnations the fire shoots off.
I love you as certain dark things are to be loved,
in secret, between the shadow and the soul.

I love you as the plant that never blooms
but carries in itself the light of hidden flowers;
thanks to your love a certain solid fragrance,
risen from the earth, lives darkly in my body.

I love you without knowing how, or when, or from where.
I love you straightforwardly, without complexities or pride;
so I love you because I know no other way

than this: where I does not exist, nor you,
so close that your hand on my chest is my hand,
so close that your eyes close as I fall asleep. 

-Pablo Neruda

 

3 Little Birds

 

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                It’s May 22nd and my second due date of the 30th is creeping closer and closer.  My son’s ashes still sit in the corner of our living room, innocuous to anyone who happens to come by, still sitting in their navy gift bag. 

               Spring is in full bloom, and everywhere  you look women are pregnant, or announcing pregnancies or about to pop.   It’s a strange wave of emotions as each one comes by, happiness and excitement for them, sadness for me.  Half the time now I’m not even sure I want to have another baby. Or I’m convincing myself I don’t.  Maybe it isn’t meant to be or maybe just not now.

            While waiting for info about our son one day Bob Marley’s “Three Little Birds” popped into my head.  I played it repeatedly and sang it over and over.  I didn’t know it for sure then but baby number three wasn’t destined to make it either.  I couldn’t have picked a more fitting song.  I now wear a beautiful necklace that Stephanie Bogetti created for me.  My three little birds all in a line, birth dates engraved on the back.  It’s not to be melancholy or to dwell on what was lost but as a sweet reminder that yes, everything will be alright.

 

Don’t worry about a thing
‘Cause every little thing gonna be alright
Singing’ don’t worry about a thing
‘Cause every little thing gonna be alright

 

Ashes! Ashes! We All Fall Down

We picked up our son’s ashes on Friday.  It was perhaps the most bizarre experience out of all the ones I’ve had so far.  The woman working at the funeral home handed us what to me could only be described as a nice cloth gift bag of sorts, like one of those reusable bags people take to the grocery store, or get at some of the Hamptons summer fundraisers.  Only this one had a cremains filled shoebox sized cardboard box sitting neatly inside.  Why was the box so big? I was expecting it to be ring box sized.  What do you say when someone hands you a swag-bag filled with ashes?  I think “Thank you” crossed my lips.  I can’t be one hundred percent sure.  What kind of person wakes up one morning and decides “Yup I was meant to work at a funeral home.”?  Obviously a very empathetic and professional person, but geezus that would get depressing after a day. Workers were setting up for a funeral or a wake outside the office door where we filled out paper work.  Everyone dies. Somehow everything involves paperwork.

Once I was alone at home curiosity got the better of me and I of course opened the shoebox sized package we had been given.  Inside that box is another sealed black box.  Ridiculous thoughts flew through my mind.  I was holding a black box.  Like the “black box” from plane crashes.  Disasters. Unsolved catastrophic events.  Makes sense.  Jinx from Meet the Parents peeing on spilled remains.  Frantically vacuuming up what I spilled when I finally opened the box.  Were they loose in there? Is there a trick to the box? Was I cracking up? Finally losing it?  I finally decided my best bet was to leave it be.

That night as I flipped through my phone I stumbled upon some notes that documented the past nine months.  I don’t know where I am in the whole process of things.  So much has happened so quickly it’s almost hard to keep up.  Mostly because so much has happened but on another level nothing has really changed at all.

 

7/3/16

“I don’t know what to say.  We were so thrilled to hear you existed.  It wasn’t for long but you did so much.”

 

7/27/16

“Especially this year I am tired of people excusing behavior with stating they’ve had a bad day, or a bad week, month or what have you.  Perhaps it’s not a bad “whatever”- most likely you yourself are the issue and your excuse is a sad grasp for forgiveness.  There are things in life we cannot control and then as sentient beings we are left with control over how we respond to those instances.  To put it plainly- we all have our shit- get over yourself.”

 

9/25/16

“2016 will always be a memorable year.  We decided we wanted to expand our family and in June had joyfully, albeit prematurely, announced our February due date.  By July we no longer had that date in our sights.  We officially solidified our commitment to each other and to Skylar with our wedding in September.  Now we would all like to announce that we are expecting at the end of May 2017.”

 

1/2/17

“I haven’t written in the longest time.  But with Christmas flying by and the end of 2016 I feel like I should jot down at least a few closing notes.

2016 will historically go down in American history as a year of turmoil for many.  For myself it can be summarized succinctly as bittersweet.

I have been emotionally assaulted and bullied to the point of having visceral reactions to any sort of communication between myself and a select few that unfortunately I cannot avoid.

I was fortunate enough to marry the love of my life on a beautiful September day at the Montauk Lighthouse.  We were surrounded by immediate family and closest friends.  I couldn’t have imagined a better experience and wouldn’t have changed a thing.

I have lost two babies that I had wanted with all my heart.  The first was 4th of July weekend, and I had to have a D&C they day before my daughter’s birthday.  The second was during a family trip to Salem in October, before I had a chance to even share the news with family and friends.  Now I’m pregnant with the third but only time will tell.  I’m too nervous to allow myself to get excited.

I’ve decided I don’t have time or patience for people who are needless attention seekers, or people who only want to bring me down to lift themselves up.”

 

2/5/17

“I am perplexed by the continuous blatant insensitivity of some.  Part of me would rather believe they are just incredibly stupid rather than malicious, but logistically nobody is that stupid.

You knew when I lost my first.  Every unavoidable time we are face to face you bring up your own pregnancy. How much it pains you to be pregnant, how awful it is.  How I should “try being sick while pregnant!”.  Thank God you don’t know about the second.  And you will for sure be the last to know about this one.”

 

13 weeks

unnamedI’m not exactly sure of what I want to say.  I just feel that maybe writing it all down will help me make some sense of my thoughts.  Currently I am 13 weeks and 3 days pregnant, with a son.  It is our third failed pregnancy in a row.  Our first pregnancy ended July 4th weekend 2016 at about 9 weeks.  We had been so excited we told everyone, had a big Pinterest inspired reveal posted on social media.  The second pregnancy we kept quiet, and we lost it at about 5 weeks in October.  I have spent the last 13 weeks and 1 day praying to God every night, with my hand over my abdomen to let me have a strong, healthy, happy, baby boy.  That was my mantra.  One out of the four came to be. 

We had the Panorama NIPS test done at 9 weeks.  My biggest source of anxiety at that time was finding out if it was a boy or a girl.  Not that it matters but my daughter’s dad is having a girl, and I always wanted her to stay my one and only girl.  Especially with another coming into her life I wanted her to keep that unique special feeling when she was with me.  It was a Wednesday after the blood draw, my daughter was just about to walk out of voice lessons and I waited in the car outside the front door.  My phone rang and a doctor Segarra, who I’ve never met in my life, but happens to work at the Southampton OBGYN called and stated simply that my test had come back high risk for Trisomy 21, Down syndrome.  All he said was that I needed to talk to a genetic counselor and have further testing and that it was a good indicator of the condition.  I burst into tears, and stupidly asked what it was that we were having.  A boy!  I was a hysterical mess and just hanging up with my husband when my daughter got into the car.  My poor baby, I couldn’t tell her what was wrong.  We hadn’t told anyone in our family but our parents and his grandparents that we were pregnant.  Stupidly.  At home we googled like crazy, how do these tests work? What does that mean?  What are my chances of a false positive? 

The next day my doctor, Dr Spataro called me and was reassuring, saying that it could be a mosaic result and that the further testing would be set up by the geneticist.  We saw the geneticist that following Thursday, 12 weeks, in Stony Brook.  She barely explained anything but as soon as she got us from the waiting room was already doom and gloom and apologizing so much for our situation.  It was maddening.  All she really did was tell us she had already scheduled us our CVS for the following week, Tuesday.  When we asked why so much later she stated because it was with a doctor that did them more often, and advised us to wait for him. My husband asked our chances of us having a false positive, her reply was 1%. 

More time on Google and we stumbled upon a man names Mark Leach, who had articles and boards filled with stories of people like us, people who had received scary news based off of their NIPS test and then everything turned out alright.  Based on this predictive value calculator our chance of having a child with Down syndrome was more like 41%, not 99%.  We had some hope.  More google searching and we found out that a CVS tests placental DNA, just like the NIPS test, not fetal DNA like an amniocentesis, which would make the test more accurate.  Previously we had our NT Scan scheduled for Tuesday, the day I was supposed to have my CVS.  We called our geneticist and told her we would rather wait for an amnio and cancelled the CVS, no advisement from her, nothing.  Our amnio was scheduled for the “soonest” that they would see me, 16 weeks and 5 days.  More waiting. 

I called the Southampton OBGYN to ask if I still should come in for my NT scan, Dr. Ralston told me that yes, I should.  Based on my NIPS test the scan would help her look for other issues such as heart problems that can be associated with Down syndrome.  We went ahead in.  A sono tech did the scan, our son was moving all around.  We have 4 pictures from that day.  She took her measurements and then went on her way.  No doctor was present during the scan to talk us through anything.  After, we spoke with Dr. Ralston, who told us that there was an enlarged nuchal which was consistent with the Down screen.  We told her of our plans to go and get an amnio, because we had thought that it was more accurate than a CVS.  She simply replied “it is.” And scheduled us to go back to the group a week after the test was done, which would have been 17 weeks and 5 days.  We left taking the news with a grain of salt, there was still feasibly a chance that things could be ok. 

Each night since the Panorama result I fell asleep repeating my mantra over and over and over, obsessively.  I’d wake up and repeat it until I fell back asleep.  Any free moments were spent obsessively repeating it.  Begging, pleading, convincing myself that my perfect faith, my steadfastness and my confidence that we were due a break would pay off.  We would be the lucky ones.  It was our turn.  I started to freak out about waiting so long for the test.  More Google.  I started to explore what it would be like if it was a bad prognosis and our child did have DS.  More Google stories on how wonderful the children were.  An equal amount of stories with scary constant medical issues.  An actual agency with families waiting to adopt children with DS.  Wishing for a test that would tell you some sort of scale as to where a diagnosed child would be. 

We spoke with my husband’s Nana about how unhappy we had been through the entire process (entire 3 processes actually), and she put us in touch with her doctor who also happens to be a family friend.  Dr. Mckenna works in Islandia, so we made the trip there this past Thursday, I was 13 weeks on the dot.  His entire demeanor was different.  He reviewed my Panorama test results, breaking the statistics down.  Based on my ppv on the test we really had more of a 9% chance that we received a false positive, it was still better than 1%.  He encouraged us to go ahead and get a CVS, that this was not something that we wanted to sit around and wait for.  He also advised us to go home and have an open and honest conversation about how each of us would feel depending on the outcome.  He called a doctor at the North Shore LIJ hospital and told us he would get us in for an exam and CVS the following day.  We left not happy, but with a sense that someone finally was taking care of us.  We are not doctors, Google doesn’t give you a MD, we were floating with no direction whatsoever until Dr. Mckenna met with us. 

Friday morning at 9am we received a phone call from the hospital, they were contacting Southampton OBGYN for my records and we should head to them immediately, they would get us in.  They even did my intake information over the phone as we were driving.  When we got there they performed a sonogram, I assumed to see if the CVS would be done transvaginally or through my abdomen.  The tech quickly got the doctor who came in and took over.  She showed us the scan and explained that unfortunately the baby not only had an enlarged nuchal but fluid encasing his entire body, as well as hydrops affecting other areas.  As if that wasn’t enough his heart wasn’t forming correctly.  Why this isn’t information that was given to us by Dr. Ralston at our visit days before blew our minds.  Actually- a day before I received the panorama result, I had experienced cramps, and since I had just had 2 miscarriages I called the Southampton group, who had me come in to take a look.  Dr. Alamnia performed a sonogram, he noticed something strange, something encasing the baby, he even called in a tech for a second opinion, they both concluded that it was just the amniotic sack and it hadn’t moved away yet, not “fluid under the skin”.  More anger, the signs had been there for so long. 

After our ultrasound we spoke with a geneticist at the hospital, again she was so much more informative than the one we had met with prior.  She reviewed what Dr. Tamtam had seen on the ultrasound, and walked us through the pros and cons of still having a CVS.  We elected to continue with the procedure, hoping that we will receive a few more answers going forward.  Many people will judge us, but we knew after discussing the sonogram that this was not a pregnancy we could continue.  We were given a very high chance that I was going to miscarry regardless, there were so many issues already.  If the baby was carried to term he wouldn’t live long past delivery. That’s not a life.  To us that’s not a life at all.  If we waited to have our amnio at 16 weeks and 5 days our results would have been the same, if I even carried that much longer.  Once you pass 14 weeks termination becomes a two day process. 14 weeks!  More anger, another fact that hadn’t been shared with us by any doctor in Southampton or geneticist in Stony Brook.  What were they waiting for? Isn’t it their job to inform their patients? 

I’m exhausted, and heartbroken.  I wanted our son more than anything I’ve ever wanted before in my life.  I had been carefully counting the days, with satisfaction as I passed where the other two had failed.  And it’s almost all over now.  I deleted my pregnancy app, I don’t want to know anything else.  I deleted Facebook and Instagram too, primarily for Lent but partly so I don’t have to look at pregnancy or baby announcements or photos or sonograms anymore.  I’m sickened.  I’m carrying someone that won’t get a chance to live, whether I intervene or not.  I’m so sad. And furious.  I just want it all to be over.  These are not experiences I ever expected to have to endure again.  I think I have better odds of winning the lotto or being struck by lightning than having 3 nonrelated issues in a row.  My husband is so good, and so supportive.  I hate disappointing him.  I feel like a failure as he just tells me everything is going to be ok and that he loves me, that we will get through it.  That he has me and our daughter, he has a family, and maybe one day we will add to it.

Poop on a Stick

That beautiful title is exactly how I’ve felt.  I could’ve titled it “You are what you eat”, but I don’t literally eat poop.  However-as it was just Valentine’s Day weekend I certainly had not eaten in a way that was very beneficial.  In fact I was stupid, and I made stupid choices that I’ve been feeling the effects of since.

I had finally gotten over a cold and decided that a weekend full of wine, cupcakes, cookies and chocolate was in order.  It’s like I can’t learn.  I eliminate specific things from my diet knowing that they don’t make me feel well and that they are harmful.  Then once I start to feel “good” I decide I’m healed and that I don’t really need to be restrictive.  I’m guilty of some sort of sick denial.  Essentially,  I’m an idiot.  Not only could I not sleep, but my stomach was  a horrible disgusting mess. I’m still  exhausted, my joints hurt and I’m exhausted (did I say that already?)

Sometimes the only way to get out of a funk is just to get up and do it.  Honestly having my daughter home for school break is a huge motivator.  Especially on days like today when it’s sunny and beautiful out it is nearly impossible to sit around indoors.  It’s not an example I want to set for her, whether I’m sick or not.  I also don’t want her to be constantly affected.  I will not allow my issue to be a constant excuse.  Sure there are times where I am just too everything to be as much of a super-mom as I’d like to be, but I think that rings true for every parent.

Getting my butt up, dressed, and out for a walk at Shadmoor has drastically improved how I was feeling.  Sure I’m achy, and for the first mile or so of the hike I had to force myself to beIMG_9133 (1) present and aware.  After that it was easier.  My daughter kept up a constant stream of happy chatter, the sun was shining (Vitamin D!), the salty wind was blowing and there was just enough mud to make it an adventure.  Fascinating how the simple things, salty air, sunshine, and being with someone you love can alter your entire being so quickly.  Life is beautiful!

“The cure for anything is salt water- sweat, tears, or the sea.”    ~Karen Blixen

 

Treatment Isn’t an Exact Science

 

Not to be pessimistic or sound discouraged, but it can be discouraging!  I’ve been on thyroid medication for over a year now and I’m still not “right”.  Since beginning treatment I have switched my medication from synthetic thyroid replacement to natural desiccated thyroid, and have my levels increased 9 times to date (if you’re curious as to why).  I am currently awaiting results from my most recent blood test, which I know without a doubt will lead to a higher dosage and possibly other medications for a few new symptoms.

Most recently I’ve been experiencing terrifying levels of brain fog.  I have an extremely hard time concentrating, or multitasking.  Most embarrassing is being able to hold a conversation.  I’m a socially anxious person as is, so not being able to retrieve the word that you know comes next has only intensified my anxieties.  There are many times where I know what I want to say and I can’t.  Or I do and the timing is off.  Smiling is my favorite for more than one reason.  I also lose things constantly, or can’t remember what I’m looking for or sometimes even what I’m doing.

On Monday, eight, EIGHT of my fingernails peeled.  Out of nowhere.  Of course I couldn’t resist helping them along.  But eight nails had that tell tale whitish bubble starting at the end of my fingernail.  A little pick and a third of the top layer of my nail was gone.  That hasn’t happened in a while, so I figured a retest was for sure due.

Arthritis?  I’m 29 and I’m pretty sure I have arthritis in my hands and wrists.  My joints and knuckles hurt.  They ache to do something as menial as type, or hold my phone, or the steering wheel.  I’m positive the knuckles on my right hand are swollen.  I was worried about having to take notes last night in class.  Luckily, it was my first class and there was no note taking.

Poor circulation.  This is something that I’ve always had an issue with, but when it’s 45 degrees in January (I just typed and erased December-thank you brain fog) and I have to wear my winter jacket inside and my hands are turning blue and freezing there’s an issue.

I’m tired.  Not normal I didn’t get a good nights sleep tired. Like painfully I can’t wait to go back to bed when I wake up tired.  I wake up and calculate the hours until I can go back to sleep.

So what do I do to combat any of this? I read.  A lot. I experiment.  I’m my own human guinea pig.  I take a handful of pills each day (when I remember).  I stopped eating wheat.  I just, as in today, began drinking kefir and taking a multi strain probiotic.  I take naps when I can get them and I exercise when I can. I do what I can and accept that this is a process.

 

 

 

How It All Began

Based on the research I’ve done for almost two years, my diagnosis story is not a unique one.  The spring of 2014- I was healthy, active, and for once actually in the best shape of my life when things began to change.  Slowly at first.  I am a single mother, who had just graduated college, had begun custody proceedings with my daughters father, was working multiple summer jobs and had just began a new relationship.  For me that was life.

By April I had gained a few pounds, as I had been running almost daily I was pretty slim so I noticed.  It didn’t bother me as I had been doing lots of muscle building exercises recently and chalked it up to that.  But then there was the constipation.  I wasn’t going.  At all.  Days would go by.  Then it turned into a week and I had to take laxatives.  I was gaining more weight and again believed it was due to the fact that I was so backed up.  During this month I went in for my annual physical.  I mentioned my weight gain and my constipation,  was told that I was getting older and weight was to be expected (I was days away from turning 28).  Also to go home and drink more water.  All of my standard labs were fine.

June, I had been drinking lots of water.  Lots and lots of water.  This time I was passed off to a doctor who told me about aryuvedic medicine, gave me a pamphlet on balancing my doshas and suggested I begin taking triphala tablets.  It was interesting, so I gave it a try.  I exercised, I ate healthy.  I took the triphala tablets and avoided foods that might mess up my dosha. My hair was falling out.  I grew up always being the chilly one in my house but I was now perpetually freezing.  I still was not going to the bathroom without laxatives.  The weight continued to creep on.

August.  I was back again.  This time I asked for a lymes test.  No luck there either.  I mentioned being painfully tired.  I was told I was a single mom who worked double shifts at multiple jobs.  Of course I was tired.

October.  I think they got tired of seeing me.  I asked for a referral to a gastroenterologist because I still was not going to the bathroom, as well as a retest of my thyroid.  Again, my thyroid was fine (as in my results showed me in “normal range”).  Finally someone acknowledged that I had put on a few pounds, but that it was nothing to worry about.  They suggested that maybe it was my birth control causing the weight gain.  I made the switch to an IUD (even though my gynecologist assured me that after using the previous birth control for so long it was highly unlikely that it would be causing my weight gain).  This change of course did nothing and the weight kept creeping on.

My pants no longer fit.  I was at least two sizes larger but couldn’t be sure because I was now a leggings only person.  I refused to buy larger jeans and stuffed myself into my J.Crew pixie pants, managing to burst off the eye hook closure at the top of the zipper.  My face was puffy and swollen.  My nails were peeling.  I was incredibly fuzzy and forgetful.  My hair was still falling out and my eyebrows began to thin out as well.  I was becoming depressed.  I felt horrible physically and not understanding what was going on began to take an emotional toll.  I went to the gastroenterologist who immediately said I had a thyroid issue.  He prescribed me Linzess for the time being and suggested I see an endocrinologist.  He did however warn me that the endo would be strictly by the numbers and if my lab results weren’t “bad enough” they would dismiss my issue.  Which is precisely what happened.  I was immediately told that I looked fine. That my labs were fine.  That maybe I was eating more than I admitted to.  That I was most likely eating my dinner and my daughter’s left overs too.  That plenty of people would want to look how I did.  I was practically laughed out of the office.  I immediately called my mother and broke down in tears telling her everyone thought I was crazy.

After confiding in a friend about my issues I got an interesting text.  Of course while being at our hairdresser she had learned that I most likely did in fact have a thyroid problem.  Our hairdresser insisted that I call her. When I did she gave me the number of a nurse practitioner who believed in Integrated Wellness.  When I met her I was thrilled!  Finally someone knew, someone listened, someone did not think I was crazy and someone began to address the problem.

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From Left: Before symptoms started after the ball drop New Years 2014, Before diagnosis November 2014, After starting treatment February 2015, Almost back to normal appearance  New Years Eve 2015