Pages

Tuesday, June 20, 2017

Survivor Mama: If it's good enough for J. K. Rowling...

Survivor Mama: If it's good enough for J. K. Rowling...: We just passed Joe’s fourth birthday. Or at least it should have been. I told someone it passed without much fuss but that wasn't entir...

Saturday, December 24, 2016

Stillbirth and PTSD

Hi there.

If you've found my blog after searching for information on Trisomy 13 or Patau syndrome, I have left up my posts to hopefully answer the questions you may have.

It's been 4 years since we lost Joe. I have PTSD and have started the #21minutesforPTSD challenge to reach out to other loss moms and dads and those who suffer from PTSD.

You are not alone. I am sorry for what you are going through that brought you here.

Love and light,
Vickie


Wednesday, December 9, 2015

Survivor Mama: 'tis the season

If you're visiting my blog after searching stillbirth, Trisomy 13, rainbow pregnancy or the MaterniT21 test, please give this a read when you get a moment. Thanks so much. ~Vickie



Survivor Mama: 'tis the season: Since it’s that time of year when people are moved by the spirit, I wasn’t all that surprised yesterday when I had my own epiphany. Her...

Monday, August 31, 2015

Small Acts of Kindness (reposted)

I am reposting this from my blog at its new address www.vickiemorgan.com.

I've been posting over there since we lost Joe in 2013.

Thank you for visiting.


June 25, 2015

When my husband was diagnosed with testicular cancer three weeks ago, it felt like a freight train had run over our feet. Imagine how close it was to run over our feet and how it would rock your body as it raced past. And how you’d feel like you had escaped death but that your feet are still mangled beyond repair. That’s how it feels to hear someone you are raising children with has a ‘good’ kind of cancer. Not benign or unaggressive or slow-growing. It’s malignant, aggressive and fast-growing. But it apparently responds well to treatment. Not so well that they let you keep the testicle it has taken over.

It has been exactly how I imagined a diagnosis like that would go. At times it seems fake. At other times I wonder if the results are wrong and he’s really got days to live. I find myself wondering if this is the last time he’ll wrestle with the boys. Or if he’ll get to finish grad school and be a teacher like he has always wanted. And I wonder if it’s okay to think about myself at all.

I’ve been finding this traumatic life experience to have a lot of similarities to Joe’s diagnosis. The not knowing and the waiting and the behavior of the human beings around us. I will share the positive stuff we’ve seen.

We had relatives/friends in Tennessee that we met at a family reunion and have kept in with touch over the internet. They sent care packages for the boys with a gift card for pizza.

A woman I used to teach RAD with came with me and the boys to the hospital and missed a day of work to be there. It was the first time I had seen her since I was pregnant with Hank five years ago.

A woman I met at grief support when we lost Joe two years ago came by with lunch and toys for the kids while we waited to meet with the doctor when the pathology report came in.

Friends and family I haven’t heard from in years emailed to make sure I had their phone numbers in case I needed to talk.

We got a card in the mail from Josh’s 90-something year old aunt to wish him a speedy recovery.

My aunt sent me 200 tea bags from Newfoundland so we could have a decent cup of tea together whenever I needed it.

We were on prayer lists.

We got phone calls.

We got a card from a family with three girls under the age of 7.

We met one family at the park so the kids could all play together while we chatted in ASL (Josh’s favorite way to communicate).

People made time for us. It didn’t change what we were going through but it made it a hell of a lot easier to put a smile on for the kids and carry on as though things were mostly normal for them. The kids in turn made us laugh, kept us busy and reminded us why cancer can go fuck itself.

If you found my blog because of a recent cancer diagnosis or a trisomy diagnosis or someone you know is going through it, let me tell you how their day looks. They probably aren’t getting much sleep. They still have to eat. There are doctor’s appointments that are difficult to bring kids to. There are hours to fill that would be made easier by a visit to play with the kids. They are already thinking about what’s happening so don’t be afraid to get in touch for fear that you’ll remind them of it. It’s okay to say you are praying for them. It’s even nicer to say I just sent your house a pizza.

Years ago we all used to live near our families and the phone and mailbox kept us in touch with people far away. Most of us are now the ones living far away. Our relationships and our physical and mental health are suffering. Don’t underestimate what a small act of kindness can do for a family going through something awful.

Last week we went to Marden’s, a discount store here in Maine that sells salvaged merchandise. We only carry debit cards with us so the giant gumball machine at the door was a huge disappointment to my oldest son because we didn’t have change. When we got to the car I decided to grab the only quarter out of the parking meter money and go back inside with him. He watched the ball of sugar roll down the big spiral and he popped it straight into his mouth. He started chattering about what flavor it might be when it rolled out of his mouth and across the floor. It sucked. I know it was only a gumball but goddammit, give me a break already.

Then I heard a woman saying “ohhhhhhhh noooooooooooooo!” I thought she was angry that we hadn’t yet picked it up off the floor but she came out from behind a pile of stock and said “Hey buddy, I saw what happened. Do you have another quarter?”

I felt like such an a-hole. I don’t know if I said any words before she reached in her pocket and asked Hank if he’d like another quarter but all she had was two dimes, a nickel and two pennies. And she still gave it to him. She told him to go ask the customer service desk to trade him for a quarter. I thanked her but I was braced for a sales associate to explain that they couldn’t open the cash register unless we bought something.

Wrong again.

The next employee was wonderful too. She bent down to Hank’s eye level and gave him the quarter and he said thank you and got a new gumball and skipped back out to the parking lot. His day was made. We’re headed there today to give her a thank you card at Hank’s request. I think that’s a great idea because maybe she’s having a rough day for some reason.

We meet with oncology tomorrow. Josh is officially a cancer patient. We are a cancer family. Years from now the kids will say ‘oh yeah my Dad had that but I don’t remember much about it.’ This same type used to be a death sentence. We’ve come a long way. I wonder if the folks who are doing cancer research ever had a rough day that was made better by a quarter or a pizza or a phone call. Maybe the kids will remember those things. I know Josh and I sure will.

Thursday, October 17, 2013

Don't let the bastards get you down


Everything in my life – good and bad – is there because of choices I’ve made. 

I’m aware that deciding to have a child brings with it a load of responsibility.  Not just after they are born but accepting that they may not emerge picture perfect and sometimes, they have chromosomal abnormalities that cause intra-uterine demises at 25 weeks and 2 days gestation.

I chose to attempt another pregnancy. 

I chose to speak up when I needed help dealing with the anxiety losing Joe left me with. 

I chose to be honest about not wanting residents or interns touching me.

It’s not lost on me that what’s going on with this pregnancy is not some random act of unfairness.  I have been following my instincts and that isn’t always met with enthusiasm.

Since my last post, my new doctor at Maternal Fetal Medicine passed on a message that she can’t treat me.  Before ever meeting me, she was informed that I don’t feel comfortable having residents involved in my care and as such is refusing to treat me at all.

She was a last resort to deliver at Maine Medical Center.

There are other doctors but none that will accept a new patient who is currently on Mainecare (before I start getting hate mail about abusing the system – my partner and I are students. Back off).

I sat down to write a blog about it two weeks ago but figured I would rather have a happy ending to the story.

I called another group of doctors who deliver at Mercy Hospital.  I’ve been waiting for a week to have my file transferred and first appointment scheduled.  Eventually I had to go get my own file and hand-deliver it to the new group of doctors because nothing seemed to be moving.

This morning I got a call from them – I’m too far along in my pregnancy and they can’t fit another patient into their schedule.  I had to ask if that was the case for all eight doctors there.  Apparently there were two who are taking new patients – just not me.

That’s four different practices.  Not to mention the ones who just flat out refuse to take a new patient who has state health insurance.

Side note: I don’t even know what Obamacare is because I’m not a person without insurance.  I have insurance.  I also have a baby growing inside me that didn’t ask for any of this.

I went to an open house at a fire station a few weeks ago and joked with the EMTs about delivering my baby in the ambulance.  So far they are the only people who have expressed any excitement or agreed to deliver my baby.

The ironic thing about this entire pregnancy is how many times I’ve joked that by now I could deliver this child at home on the kitchen floor and be just fine.  I may have to do that.

At 26 weeks pregnant, I’m considering a home birth even though it’s not covered by Mainecare.  It would solve a lot of things I’ve been worried about:

         1)    Who would take care of H while I’m in labor at a hospital
         2)    Having a crew of residents watching me and practicing their pelvic exams on me
         3)    Not knowing who would be there for the delivery (one of two, four, eight or fifteen practitioners)
         4)    Laboring at home for as long as possible

Worst case scenario, if I have to be transported to the hospital, there’s a fire station down the road full of people willing to deliver my baby.  They even have a safety seat on board for H and plenty of room for J and if necessary, are equipped and trained to do everything a critical care nurse might do.

Pregnancy after loss has been a bumpy ride.  I read about women who had a lot of complications along the way and are so grateful to their doctors. I’m thankful that this baby is just percolating in there, not causing a fuss and growing like a champ. 

I promise my little pop tart everyday that I will have taken care of everything by the time we’re ready to meet face to face.  I’m going to yoga twice a week and therapy twice a week and I’m doing the work that needs to be done from the outside in and the inside out.  I’m the only person with even the tiniest amount of control over the health of this baby so I’m not letting the bastards get me down.

Oh I’m still angry – don’t get me wrong.  In the midst of all this, we lit candles for Joe who has been gone now eight months.  I made it past 25 weeks and 2 days pregnant and woke up that night in a full blown panic attack convinced my body would eject this baby because of the drugs they gave me to force Joe out at the same gestation date in February.

I wonder sometimes if Joe sends me these obstacles to keep my mind off the reality that he’s never coming back.  Or if he’s helping me find my voice and my backbone by showing me what I’m really made of.  Or is he just teaching me to focus on what’s important?

There’s a line in my medical chart that sums up what he meant to all the doctors and midwives I’ve seen.  IUFD (intra-uterine fetal demise) of male fetus at 25w2d with known Trisomy 13.  He’s one line in the chart of a difficult patient on Mainecare.  Neither one of us amounts to a whole lot.  I can choose to accept that or listen to one of my favorite quotes from Helen Keller:

 “If you turn your face to the sun, you won’t see the shadows.”

There are consequences to every choice but as a survivor, I like to remind myself there are ALWAYS choices.  I don’t need to feel forced into anything.  In my experience, my choices may leave me a little lonely for a short while but they also open my life up to all the good things.  I have a miracle growing inside me.  I have a wonderful partner and son who adore me.  What else is there really?

Sunday, September 29, 2013

Do people still say 'retarded' ???

September 29, 2013
Seven and a half months

I haven’t met my new doctor yet but I had my first appointment with a registered nurse. The office is at Maternal Fetal Medicine (MFM).  It was an interesting morning.

Two older, robust women were in the waiting room including everyone in their conversation, poking at kids and discussing how often one of them was going to use the bathroom (I wish I was kidding).  I didn’t care even though we were all sat there for 45 minutes until one of them blurts out “How did I not know that, I’m so retarded.”

A mom across the waiting room caught my disgusted look and she smiled that knowing look and pointed down at her tiny daughter in her arms and mouthed the words “I know, she has Downs Syndrome.”

I just sat there and cried.

A few minutes later a pregnant woman and her mother walked in pushing a stroller with a kid about H’s age.  The pregnant woman refused to sit down and instead chose to lean against the wall staring into space.  Same spot I picked when I lost Joe. She looked about 20-25 weeks along.  She wouldn’t look at her toddler who was chattering away to everyone in sight.  They were all escorted inside by an ultrasound technician and about ten minutes later, the technician came out looking for the next patient.  The previous family had been shuffled out the back.  I have a hunch I know what their weekend turned into.

I thought about those encounters while I sat through my appointment.  I was told about hospital policies and the chances of the doctor I’ve signed on with delivering my baby – one in 15.  She covers two nights and one weekend out of the month.  Except when she’s on vacation.  There are 14 other doctors who do rotations.

Maine Medical Center (MMC) is a teaching hospital so the nurse was explaining what that will mean for me - residents and students and an audience of people with no direct impact on my health care.  I brushed her off and said, no need to discuss that, I won’t have residents involved in my delivery.  Well that’s not how it works, nurse continued, it’s part of the hospital’s setup, the residents have to learn somehow.  

I replied, "Not to worry. I’ll put it in my birth plan that I don’t want residents."

“You probably shouldn’t deliver at Maine Med then.”

Forced from my docile, pregnant cocoon, I explained that my decision on where to deliver was made already and having delivered two babies there I knew a thing or two about what I could and should do, thank you, let’s move on.

I’m almost glad she tried to give me advice because it left me feeling compelled to share what I know and have learned in the past three years.

#1.  You do NOT have to be touched or seen by a resident in a teaching hospital.  You are not only allowed, you are entitled to see a real doctor.

#2.  You do NOT have to give birth in front of a team of students so they can see how it’s done.  Someone else can be on display if they choose – you don’t have to submit to any public viewings by people not involved in your care.

#3.  Nurses don’t know everything.

#4.  Doctors don’t know everything.

#5.  Nobody knows everything.

#6.  Hospital policies don’t supersede your right to privacy or qualified doctors.

#7.  If you request an actual doctor, the nurses may be irritated with you and it may take longer to see someone.

While I’m at it, here’s another list.


1.  The silver nitrate eyedrops they put in a newborn’s eyes make his/her vision blurry and they sting.  Translation, he/she is brand new to the world and instead of seeing your face, his/her eyes are burning.  Unless you have an STD (chlamydia, syphilis, gonorrhea, etc.) the drops are unnecessary and you can request they not be used.

2.  The vernix that covers a newborn baby is good for their skin.  It does not need to be washed off for days.  If a baby is not washed, the nurses have to wear gloves when handling the baby.  It’s a pain and some extra work for hospital staff but waiting to bathe your baby is an option.  The nurse who handled H in the Neonatal Intensive Care Unit (NICU) ignored my request and cleaned my baby when I wasn’t there, later explaining that the vernix was getting on her nerves.

3.  The heel stick blood draw to run routine state screenings in the hospital can give false results because so many of your hormones and blood and guts are still running around in the baby.  A new set of tests would have to be ran to confirm anything they find anyway.  You can wait to have the testing done through your pediatrician so that A) the results are reliable and B) you don’t run the risk of driving yourself crazy with worry if there’s a false positive.

4.  You don’t have to bottle feed your baby while waiting for your breast milk to come in.  Even if a resident doctor comes in full of piss and vinegar demanding to know why you are starving your baby.  Even if she asks if the 5ml you wrote on the feeding chart was a mistake.  I would never have known that had I not taken a breastfeeding seminar.  Or that a first-time mom can take up to three or four days for her milk to come in.  H not only survived, he was off the charts for weight gain in a week.

5.  You can cram all the diapers and diaper shirts you can manage into your hospital bag before you leave.  I don’t know if there are any consequences but it helped those first few days.

6.  You can spread out vaccines if you choose to get them for your baby.  Two and three and four needles at a pediatrician visit sounds like a lot because it is a lot.  Some of them are required before kids start school but I think if you sign some documents taking responsibility for a scurvy outbreak there’s no rush to make baby a pin cushion.

7.  First-time moms are not idiots, they just aren’t respected or listened to.  You won’t get a do-over so don’t be afraid to be a bitch the first time around.

8.  Losing a baby is the hardest thing you will ever go through.  Don’t assume you are over-emotional or too demanding if you find anything triggering or stressful after a loss.

9.  Being sexually abused as a child is an absolutely acceptable reason to ask for less vaginal exams.  Especially if you have never seen the doctor before. 

10.  Checking for dilation during office appointments is completely worthless information before you are in labor.  It helped to know I was four centimeters at my last office visit before I went into labor but it didn’t make the next 36 hours go any faster.  (I was induced after Joe died and not checked once).

11.  It’s okay to ask questions about anything you don’t understand.  What’s being done to you or your baby is 100% your business.   Pregnancy is not an illness and even though deliveries happen in hospitals, you are not a traditional ‘patient.’  You are a consumer and everyone has a supervisor.
 

So often over the course of my life, I have walked away from experiences feeling like a complete failure wishing I had said something but not wanting to rock the boat or be disliked.  It hasn’t gotten me anywhere.  I still feel awful after I speak up but it does more damage to me when I stay quiet.

I didn’t cause a scene in the waiting room because all I could think of was to point out the little girl who had Trisomy 21 and demand those ignorant women apologize.  I’m not sure I handled it well to be honest.  I feel like I let Joe down.  I did go over and tell the mom about my little boy and congratulate her on the beautiful little miracle in her arms.  That was all I was capable of at the time.

I’m a mom of a child with special needs.  I didn’t dodge that bullet because Joe died.  You just can’t see him with me.  It hurts to the core when I hear the word retarded or even the more subtle things like pretending to finger spell or making noise as though you can’t talk or make jokes about riding the short bus or say someone belongs at the blah, blah, blah school.  It all amounts to the same thing.

You know me though.  Much braver on my blog than in person.

Saturday, September 14, 2013

Leaving midwives behind

September 15, 2013
Seven months


Joe will be gone seven months tomorrow.  I came across a blog from exactly a year ago when I was worried about finishing my psychology degree and how I would handle H starting school. Tonight we re-lit three of Joe’s candles.  One for the new baby, one for Joe and one for H – the three leaves in my lucky clover.  We’re watching a dvd of the ultrasound we had earlier today.  H keeps saying ‘Baby Joe!’ and we have to keep reminding him, no, not Joe, new baby.

Joe will always be a part of our lives.  We didn’t throw away or hide the big brother shirts and we talk about how much we love him often.  We are already a family of four.

Sometimes it feels like he’s really gone and other days, it’s like he’s sitting beside me holding my hand when life gets too real.  I’ve been extra anxious now that the baby is approaching the same size Joe was (1 pound, 11 ounces) and the kicks are just as strong.  It’s not easy.  I wonder if this will be the last kick; if little one is getting enough of the things a baby needs; if we missed another Trisomy the tests can’t pick up.  Mostly I feel guilty for wanting a healthy baby, for not wanting another still, motionless child in my arms.  I don’t know how I got through this far.  I don’t think I could survive it again.

Over the past couple of months I’ve been seeing a group of midwives who promised to focus on both mom and baby while I’m pregnant.  I was upfront in the beginning about my anxiety, PTSD and fears.  They reassured me time and again, we are here for whatever you need.  Come in as often as you want to hear the heartbeat if that will help ease your mind.  Chase us down the road if you see us in public if that’s what you need.  Call anytime. It only takes two minutes to drop some gel on your belly and put the Doppler on there.  That’s what we’re here for.

I’ve also been meeting more and more loss moms whose stories haunt my nights and my days.  I know the things that can go wrong.  I know there are hundreds of other possibilities.  I’m also in my first year of loss.  I am a nightmare patient.  I’m also a nightmare wife and friend.  Some people have signed on anyway and are loving me through this process.

The midwives – not on that list.  The exact reason I left my OB was because a secretary told me my request for an ultrasound was unnecessary and not an emergency and at the very least I should go to the more equipped facility to do this pregnancy right and refused to ask the professional I trusted to take care of me.  All three things have been said to me at the midwives practice.  By a secretary.  I gave up a great doctor to avoid going back there (granted he didn't address the secretary's behavior but he was a good OB). 

Two days ago the eldest dirt mother at the midwifery group read off all the dates that I’ve called in and told me what I expected of the practice was abusive and they couldn’t have one pregnant woman ruling the roost.

Okay then, so see you in a few weeks and then eventually I will trust ye crowd to make decisions that are best for me and my baby and not let your petty, bitchy grudges against someone who was asking you to do your fucking job get in the way.  Alrighty then.

She had taken offense when I asked if I could start having ultrasound each month.  I’m approaching the time I lost Joe.  There’s only so much yoga a person can do to ease anxiety.  Ultrasounds are relatively harmless (unless you are the rat in the study that they held an ultrasound on for those 72 hours) and maybe I changed my mind about how many I wanted.  I went from the none suggested by some folks to the amount some of my mom friends had for much less reason than a previous loss.  My ‘care provider’ told me she would refer me for one more but unless it was recommended by the high risk doctors at Maternal Fetal Medicine, that was it – she was not going to be directed by me.  Then she asked in her best condescension ‘do you understand what I’m saying?’

It flashed though my mind to spew ugly things at her about death and loss and grief and cold bitches who let a tiny bit of power convince them they have some magical ability to keep babies alive – but instead I stayed calm.  I felt something in the room that kept my hand steady and my voice from cracking. 

I had already spoken to the folks at Maternal Fetal Medicine who were not surprised to hear from me at 21 weeks and were bending over backwards to fit me in to check on my baby.  And what do you know – given my history, they were more than happy to schedule me for each month from here on out for as long as I’m lucky enough to still be pregnant.

I need to be surrounded with love right now.  With excitement at the miracle in my body. 

The midwives are the only act in town unless I want to do a home birth or go back to an OB/GYN.  I can’t imagine they aren’t aware of that.  I wanted a more empowered birth experience and I fail to see how cutting someone down is supposed to be helpful.  Perhaps if they had returned my husband’s calls when he tried to act as my birth partner and called for me.  Or if the two ladies in the office the day I asked for a heartbeat check could have stuck around for a couple of minutes before taking their hour and a half lunch break, I would have felt supported.

I know at least a couple of people who read my blog regularly who will roll their eyes and pat themselves on the back for always knowing what a screw up I am.  What a disappointment and wreck I’ve made of H’s and my husband’s life.  Whether that exists in my head in the wee hours of the morning or if it’s real, I don’t know.  What I do know is that being dismissed and accused of being abusive when I’m just asking for help puts me right back into those relationships where I’m nothing – someone whose birth was a mistake, whose existence is simply a scourge on humanity. 

I already feel low enough.  I have a son who looks to me for cues on how to allow people to treat you.  How to pick yourself back up when you fall down and when people are mean to you.  NOTHING else matters.  I refuse to be anyone’s doormat while he’s watching.  I owe it to him and Joe to take care of myself even when I am struggling to face the day.

And to this little miracle here in the picture below.  



I went to my ultrasound yesterday and it was incredible.  My baby is beautiful.  All the organs are functioning like they should, everything is in the right place and this little snippet from the scan is the most amazing piece of artwork I’ve ever seen.  How did I get so lucky?  How has this been happening while I deal with grief and loss and the everyday crap that happens?

Possibly a little grace from the universe.  Perhaps a little help from Joe Grayson. We can all feel the kicks now and baby is happily growing.  I’m not na├»ve enough to expect one more day of this.  Horrible things happen all the time.  But if I get up tomorrow and feel more kicks and some pain in my back and a little queasiness from the hormones, I’ll know I get a little more time being Mama.  There’s so much joy in my life alongside the grief.  A hand that is almost the size of mine (even though he’s not even 3 years old yet) feeling his baby brother/sister moving and planning for next year when we go to the hospital to bring baby home is almost too much to take.

If I didn’t have people who overlook the crazy and still want to be in my life, I would give in to the jerks.  So if you’re a jerk and you can’t figure out why I don’t just disappear, blame the good people in my life.  Until I can stand on my own, I will keep relying on those who think I’m awesome.  If inspirational Facebook e-cards have taught me anything, it’s that you can’t please everyone.  To hell with the rest of them.

The search is on for an OB/GYN in the Portland, Scarborough, Falmouth, South Portland area who has experience dealing with rainbow pregnancies.  I bought my own Doppler so we have time.  And for the record, I have a lot of respect for midwives.  Just not a lot for those who struggle with simple things like feelings.

Sunday, August 25, 2013

Memorial for Joe

Six months and ten days

(To join us for a candle lighting tribute to Joe )

click on the link above for details.

Thank you for all the kind words and messages of support.  We thought this would be a nice way to be together even for a few minutes no matter where you are.

Friday, August 9, 2013

Rabbit stew - Still not six months

I did something a little out of character last week.  I went to see a medium.  Not that I don’t know where Joe is – I guess I wanted to know if he was in turmoil or unhappy that I’m having a baby.  And the verdict is…..dat dat dat dah….I have no idea.   I know a lot of people try the same thing to find peace after a loved one dies and some people absolutely get peace from it.  I did not.  I kept waiting for something that only Joe would know or maybe to hear that someone else who had passed away was coming through.  And alas, I am left with memories that I already had and what I think my loved ones would want to say.

I was on a Facebook page for lost babies and saw a medium who had a waiting list for ‘readings across the miles.’  Apparently she had suffered a loss as well so that gave her license to peddle to bereaved moms.  It’s a lucrative market.  I went to someone who did not advertise, who was recommended by people who had great experiences there.  I just didn’t get a mind-blowing convincing read.

The weird thing was the conversation in between ‘messages.’  The stuff this woman talked about in passing resonated with me.

She talked about Joe’s story impacting people.  That people from all over were hearing about Joe and he was making a difference in a lot of people’s lives.  I had to ask if any of them would ever tell me or Joe’s dad about that impact.  She explained some folks are young souls and simply cannot see the world outside themselves.  They see things like Joe’s death only for how it affects them.  They love chaos and will sometimes go out of their way to cause it.  They are incapable of feeling empathy but not because they are bad people – they just have young souls who have not yet learned how to be, or act, or care in a way that’s helpful to others.

This medium said maybe this new baby would be an easier channel for people to reach out and I had to ask – even though I wasn’t really buying into the whole talking to the dead, messages from beyond idea – will Joe help me to forgive these people who have let us down when we needed them?

I know mediums aren’t for everyone.  I don’t know that I would ever go back or even if I would try again with a new medium.

When I came home, I felt sick to my stomach for the rest of the evening and had to be alone.  The next morning, I woke up with a sense of something I had not felt before.  I don’t know that Joe came through in my session with the medium but he certainly paid me a visit in his own way.

I go to a grief support group and the coordinator keeps talking about doing the work – not avoiding the grief – and insists that a goodbye ritual is necessary for healing.  She says even women who enter menopause are encouraged to do something to mark the end of their fertility because it, too, is a loss.

I’ve rolled my eyes each time she’s mentioned those ideas.  I’m going to a support group.  I write about Joe.  I go to counseling TWICE a week.  How much more work can I do?

I don’t want to do a goodbye ritual because I don’t want to say goodbye to Joe.  When I ‘sit with my grief’ I just pray that I’ll stop breathing so I don’t have to feel what comes out.  A month ago I finally got the guts together to get Joe’s death certificate and it was a wreck.  They had called him Baby Linegar and crossed out that and put Joe G. Morgan in there and then someone had written above the middle initial – rayson.  It was not at all what a person deserves.  His poor little name appears on one document. 
Normally I’d be outraged but the idea of going back to my OB or the funeral home to flip out or demand a new one…I’m out of fight.  I can’t yell Joe’s name ever again in anger. 

One thing I’ve learned is that the world is not going to give me a break because Joe died.  They are going to continue being assholes no matter what happened.  That has given me some peace to realize that.  No more than I get special treatment because I’m pregnant.  People don’t reach back to hold the door for a second to let me through.  I don’t get let though the Dunkin Donuts line when I’m nauseous holding a toddler that was promised a sprinkle donut.  It’s okay.  It just means I need to treat myself special.

See how I ramble when I talk about things that make me uncomfortable?

I didn’t hold a memorial or ask a church to hold a service for Joe because I was afraid it would be me, H and J sitting at an empty funeral.  It was a good excuse not to mark Joe’s life because ultimately, I didn’t want to face what happened.  I cancelled the urn we ordered the day Joe died.  I said it was because the funeral director was a jerk and he was, but I felt like the clover leaf I had engraved on the urn was too flip and almost mocking.  I felt lucky and blessed to be Joe’s mother.  I felt drawn to the Irish blessing and I knew the second I got pregnant this time that I was carrying Joe’s Irish twin.  I was angry at myself for feeling any peace at all.

So here I am, six months later, planning a memorial.  Not that I’m comfortable with it all of a sudden.  I’m turning inside out.  It took about six different nights sitting in front of the computer searching for urns.  I could go to another funeral home and see their displays but that’s not on my list of capabilities either.  I did finally find a small wooden memory box with the entire Irish blessing and it will have Joe’s name engraved on it.  His full name - Joe Grayson Morgan.  I’m not ready to transfer the ashes.  I haven’t even opened the package they came in.

I ordered some candle holders that have the Irish blessing on them.  I ordered a giant door hanging with the blessing inscribed on it that will not have Joe’s name but it will be over our entranceway and I know all three of us, eventually four of us, will add Joe’s name to it every time we come in the house.  I’ve ordered some oxalis (shamrock) plants.  They look like clover leaves with tiny white blossoms.  They are easy to care for, love being watered, survive indoors in winter and outdoors in summer and can last for more than a dozen years.  I made a new friend at Falmouth Flowers because of Joe but that story is for another blog post.

I felt it was necessary to mark Joe’s life before I can even begin to develop a relationship with this new life growing in my belly.  I wish I could say it’s been seamless and easy to do that but the feeling is a lot like the day Joe died.  When I was refusing to leave the room at Maternal Fetal Medicine until someone told me where I was going to get a toothbrush for my hospital stay. Picture Bugs Bunny when he’s being forced into the stew pot.  It’s not pretty and I’m anything but graceful.

Since placing all the orders, I’ve started having panic attacks again.  The urge to get out of Portland has been overwhelming.  I know I should be here to accept the packages but I just want to put the mail on hold and go camping somewhere that I can’t get phone signal.  Like a lot of mistakes I almost made since losing Joe, leaving town is impossible right now.  Today for example it’s pouring rain and our tent is less than ideal for monsoon weather. 

I know without question Joe has been watching over me since he left.  Sometimes he points me in the right direction.  Sometimes he puts people in my path that I so desperately need.  Sometimes he gives me just enough strength to breathe.  But he can’t change other people. He’s having a hard enough time changing me.  I want to be stronger and I want to be a better mom to him, to H, and to this new baby.  Before I can do that, I need to face that Joe is not here.  That Trisomy 13 stole him from me and I had a stillborn baby in February.  I need to face it to be more present with H and stop worrying every second that I’ll lose him too.  I need to face it before I can embrace a new child into our lives, before I go back to Maternal Fetal Medicine for this baby’s 20 week ultrasound where our whole world was derailed just six months ago.

I have also come to realize that any room that holds Joe’s remains, my son H and my husband J is a full room and more than enough to celebrate Joe’s short time with us.  Turns out I’ve always had everything and everyone I needed right here. 

The horror is not over for us but I have hope that someday it won’t feel quite as bad or raw. Just as the panic attacks eventually pass, so will my fear that facing my grief will be the end of me.  I have not dealt with Joe’s death.  I’ve gone through the motions and did all the textbook things a person should do to be healthy after a loss.  But my experience is tucked way back in a place I’m afraid to go.

My husband keeps telling me this is not saying goodbye, it’s finding a way to keep Joe in our lives.  I’ve really only ever lost one person that devastated me nearly as much as losing Joe and watching his casket be lowered into the ground was the worst.  But there was some healing in giving his eulogy and helping plan his service.  So I guess it’s a matter of reframing this.  It’s not a memorial, it’s a tribute.  And it’s a part of life just like birth is.  I think a person’s brain needs to see and touch death to really appreciate life.  No question about it – this sucks.  But it is nice at times to be in an empty room and feel someone I love beside me.  That’s comfort that even people who are alive and kicking can’t provide.

When all the items I’ve ordered arrive, we will light some candles and pick up our oxalis plants to honor Joe.  I don’t know what date that will be and I don’t know if I will share it.  I do know that writing about Joe has been a tremendous help.  Reading other blogs has also helped me.  One good turn deserves another.  Thank you for visiting.  I’m sorry for whatever your loss is that brought you here.  But I wish you peace and the strength to keep surviving.

An Irish Blessing

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


Saturday, August 3, 2013

Changing providers



August 3, 2013
Not quite six months

Hi I’m Vickie and I’m a _________.

Depending on where you find yourself, you usually get two or three words to describe your life.  At R.A.D. classes I say that I’m not a police officer (most of the instructors are) but I have dealt with a LOT of them.  At yoga, I’m Vickie and I’m 15 weeks pregnant.  At the grief support group, I’m Vickie and I lost my son Joe to Trisomy 13 on February 15 of this year.  In another month, I will be Vickie, the full-time student.  At the park, I am H’s mom. 

Lots of labels and none seem to go together. That blank line should have the word misfit.

When I say I lost my son six months ago but I’m also pregnant, I lose my grieving card.  At prenatal classes, I am not the person anyone wants to sit next to for fear that they will catch stillbirth.  I don’t fit in anywhere.  At a kid’s clothing store the cashier asked me how far along I am and when I said 15 weeks she said wow, usually on your second you pop right away!  I didn’t bother to tell her it was my third.  She had a bulging little belly behind the counter – why ruin her day?

More than anything, I am grieving and anxious.  When I feel sad about Joe, I can’t shake the feeling that something is wrong with the baby.  This pregnancy has been smooth from the start although you would not know that to look at my medical chart.  I’ve had three ultrasounds, I’ve been in at least once a week to hear the heartbeat not to mention the phone calls and I haven’t even had my second scheduled visit yet.  They keep reassuring me that’s what they are there for and I feel like a lunatic that I’m not reassured yet and have to keep calling.

Since I mentioned this in an earlier post, I did change care providers.  I thanked my OB for taking such good care of me and hoped he would continue to be my gynecologist and if something were to go wrong, I wanted to leave the door open so I could at least get a second opinion on my pregnancy.  I have no idea what usually happens in those situations.  In mine, I was told good luck and good bye.  In writing.  Good times.

I am now seeing a group of midwives.  It’s a gigantic leap for me to go from specialized care and delivery in a facility that sometimes does seven or eight C-sections a day to one that does possibly one or two a week (that’s directly from a surgical tech at the hospital I’m hoping to go to).  Midwives and taking charge of my own care is all part of trusting my body to do what needs to be done and giving up on the idea that it’s better to live with the devil you know than the one you don’t know.

At my old practice, the day Joe died, I was sitting in the doctor’s office going over what would happen if the ultrasound confirmed no heartbeat.  The secretary buzzed in and said “They are waiting for Vickie at Maternal Fetal Medicine, she needs to get over there right now.”  The doctor told her we were talking and would be right out.  Keep in mind, my two year old and my husband were also in there asking questions and discussing what was about to happen to me – a person they loved and were worried about, since things don’t always go as planned and if I needed surgery or if this would take a few days, we wanted to know.  And also, I was not in a rush to deliver Joe.  I was very scared and I knew he wouldn’t come out on his own in the doctor’s office.

When we were leaving the office, the other secretaries were being very nice and I stopped to talk to them and the boss of the universe interrupted to tell me “Vickie you have to get over there NOW.”

Nobody said anything to her.  Everyone looked at their hands and I went off to deliver   my dead son, my son’s brother, my husband’s little boy.  I wish I could go back in time and tell her to go fuck herself and give me a goddamn second.

So when I called that day two months ago to tell that practice I was having a lot of anxiety about this new baby and hoped I could go to a different facility for the scan and possibly a little earlier appointment, what I expected was an absolutely,  whatever you need, you have been through enough. 

Refusing to even ask the doctor and telling me it wasn’t an emergency and then arguing with me and my husband is on the other end of the spectrum.  Telling me to start this pregnancy off ‘right’ is out of line.

In my world, anxiety is real.  Women’s feelings are real and they count.  If I’ve been up all night having flashbacks of Joe’s diagnosis and delivery, you better believe the next morning I am going to do what I can to relieve some of that stress.

And to put it in more concrete terms, if my pregnancy is bringing thousands of dollars into a practice, my concerns matter.  If they want to let someone with such wonderful people skills on the front lines and refuse to acknowledge her behavior, no sweat.  I won’t be darkening their door ever again.  

As for the switch to midwives, I struggled with the decision.  It seemed awfully crunchy and hippie dippie to me.  Turns out – I’m hippie dippie.   Multitudes of assholes in my life have made it hard to stay centered and true to that but I’m kind of a moon sister or earth mother or whatever you want to call it. I don’t know that I could ever make the switch to organic everything and patchouli and shoes made from dirt but mostly that’s because I’m afraid of germs and trying new things.

I have been to tour the birth center where the midwives deliver and believe it or not, they have IV poles, medical equipment, disinfectant – imagine!  A real hospital.  The difference is in their philosophy.  To let a low-risk woman labor and not rush into a cascade of interventions.  Nobody is going to put my baby at risk – especially me.  I just have no reason to EXPECT complications. 

It’s a huge change for me.  I'm not an optimist. If I hear myself laughing too hard, I catch myself wondering what bad news is on the way that will make me cry soon.  Peace makes me uncomfortable.  I don’t like that about myself so I’m trying to turn it around.  I don’t want my kids growing up with a pessimistic, paranoid, insecure Mama.  More than anything I want them to trust themselves and their instincts.  I don’t regret a single decision I’ve made when I listened to that inner voice. 

These days I let Joe guide me and he is unblemished and untainted by the ugliness that has pushed me at times to do what others wanted.  He is my guardian and I have to trust that he wouldn’t lead me or his Irish twin to harm.  Sometimes he puts an asshole on a front desk to warn me that I need to make a change.  Sometimes he puts a friendly neighbor on the lawn to welcome us to look at a new apartment.  Other times it’s a push to get out of bed and take care of my son which ultimately helps me heal more than pulling the covers over my head.

I don’t think there will ever come a day when I wouldn’t give my own life to give Joe a day here on earth.  To see my boys play together.  Joe’s short life and the lessons he left me with were a gift.  I wouldn’t change that.  Caring is always a risk.  Grief sucks but it just means I loved.  I regret nothing.

We will be holding a candle light memorial for Joe on August 25, 2013.  Please join us by lighting a candle wherever you are.  For updates and details, the link is here: Candle Light Memorial