Thursday, June 25, 2015

Small Acts of Kindness

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.

Saturday, March 28, 2015

2 years, 1 month, 13 days and a documentary


Well “Five Minutes Peace” never happened. Turns out, I don’t know how to do a podcast.  There were websites to explain it all but the second I saw words like burn feed, I glazed over. I even had guests who had agreed to be interviewed for it. So thank you Sean Panting and Sarah Walsh. There will be no podcast. But there will be a tv show.

You see my friends, those who have been waiting for me to crawl out of the pits of hell, and even those who have enjoyed seeing me down there, I am breathing again.

I don’t see Joe anywhere or dream about him. He doesn’t leave me any messages or signs. He’s still gone. He isn’t coming back. He should be here. He should be playing with his brothers. We should be arguing with doctors who don’t believe babies with Trisomy 13 matter. But we are not.

As parents of a stillborn baby, we are never asked for pictures. We don’t tell the birth story. The only safe place to grieve is around other parents who understand.

We were launched into another category when we had PJ. We became people who should no longer be grieving, who shouldn’t complain about how hard it is with two, who are never quite happy enough or sad enough to anyone’s liking. Pregnancy after loss sucks. It’s harder than other pregnancies. Having had all three, I can say that.

We have lost friends. We are not the same people we were 2 years, 1 month and 13 days ago. With the solitary exception of losing Joe, we are better people now. Mostly because we don’t give much of a fuck about anything anymore. What matters is within these four walls and the people we care about get that. Anyone with good intentions is just fine with your personal space and boundaries.

I was told a few years ago the first time I took RAD that when someone stands too close to you at the grocery store and isn’t paying for your purchase, they shouldn’t have any issue with you asking them to step back. Should they cause a scene and call you a psycho or other derogatory name, they probably were trying to get your PIN or hear you tell the cashier your phone number for the Rachael Ray dishes.

I happened upon such a woman at Burger King about a month ago. The place was empty except for her and my family of four. She had her order and was sitting as I approached the drink machine with Hank. She decided she wanted more ice and proceeded to stand so close to me that when I exhaled her hair moved. Normally I would shrivel up. But since I was letting Hank pick his own drink and press the button, I took exception when she asked if she could get in there for just a second.

Keeping in mind, I was highly triggered that day for separate reasons. I was already worried about how many people had coughed on the drink lids, who didn’t wash their hands back in the kitchen and how to eat chicken nuggets without actually touching them.

So I told her actually now’s not a good time. We are getting our drinks.

Her hair didn’t move. In fact she started breathing on my neck. So I took a deep breath and calmly said Ma’am, with all due respect, you are not making me go any faster.  Could you please step back.

She stepped away…to get her tray and go to the counter and demand her money back because my family had ‘ruined her dinner.’

With my 1- and 4-year-old looking on, I tried to play it cool.

Until I saw her storming back towards our table.

I stood up and got in her path and she inhaled deeply and put her finger up in my face to deliver the speaking to of a life time. But I was rude. I interrupted her. I told her that whatever she had to say was unimportant and that since I was there with my kids, she should back off. She leaned in closer. And started yelling. So I mentioned that should she proceed further, I would absolutely be pouring my drink over her head.

She kept yelling some nonsense about praying for me and where I was headed. My partner noticed things were not calming down and came over and stood between us and walked against her until she backed up.

He looked like the stew pot that Bugs Bunny was trying to stay out of. All I could see was her trying to get around him to get at me.

She finally grabbed her now takeout bag of Burger King cuisine and I guess she could see me hyperventilating. She leaned in and said “You brought this on yourself.”

I’ll admit it crossed my mind to go scream at her I HAVE PTS-FUCKING-D, MY BABY DIED YOU ASSHOLE.

And in my Canadian-born paranoid pacifist brain, I wondered if she had a gun in her Toyota 4-Runner.

She did not have good intentions. In fact, when I saw her ahead of us complaining and asking for a refund for the 17 cent salad dressing, I should have gotten a clue that she was out for a fight. Why she chose the 5-foot-woman with the two small children and an already panicked face, I have no idea. Maybe I am an easy target. Who gives a shit why?

I want to make a documentary. I don’t expect it will help anyone understand how it feels to lose a baby. I doubt it will convey the range of emotions it brings out to have a baby after a loss. What I hope to accomplish is to help some parents tell the story of the children they lost. To have some record that even though you can’t see them at the playground with their brothers and sisters, they were here, they mattered and they had names.

It will include images of us with our families and there will be interviews and poems and letters. There will not be pictures of lost babies, there will be video tributes that we can watch again and again. And maybe it will take some of the sting out of the birthdays and the death anniversaries.

To look at us from a distance, we have two boys. PJ has no idea there was a baby before him. Hank knows that sometimes a baby comes out of Mama, sometimes they die before they come out. I want to tell the story of the baby who is missing from that picture.

If you have experienced the loss of a child during pregnancy and have since had a baby or adopted or are waiting to adopt, and if you are willing to share your family’s story, send me a message on the Facebook page or through Twitter.

That is in no way, shape or form discounting the families who don’t fit those parameters.  I can't being to imagine your grief to have experienced your child and then watch him/her die. This particular project is to tell stories that reflect ours and Joe’s.

Over the next few months I am learning to use the equipment to make my documentary a reality. The local television station has been lending me gear and teaching me to use it. I have a Vimeo page and projects in the works to get better at filming, interviewing and editing.

Perhaps I’m wasting everyone’s time. Big deal. I don't get signs or messages from Joe. I have physical, emotional and psychological scars that may never heal.  I’m simply following the tiny little voice in my head that keeps telling me that my creative ideas are worth looking into. If you want to call that a sign, that’s up to you. For me, I make a point of thanking him every time I feel a rush of happiness or dodge a bullet. I have a guardian angel. This is my way of paying tribute to my lost baby and to my babies who survived.

Here’s a link to my first video production. It’s my first time editing too. So while I’m off practicing, consider whether or not you would be willing to share your baby’s story with my camera. Others might see it but it will be for us. The loss Mamas and the loss Dads. The brothers and sisters left behind. I’d love to hear from you.


 

Wednesday, August 27, 2014

Five Minutes Peace


I’m working on a podcast series called “Five Minutes Peace.”  It’s about the challenges of creating anything when you work at home with small children depending on you.  It’s also about silencing the anxiety, depression, obsessive-compulsive and post-traumatic stress disorder symptoms long enough to create something worth sharing.

I’m hoping to interview some artistic types and share what works, what’s a pain in the arse and how the work ultimately is improved when you gain some perspective from these little beings who steal your time and your heart simultaneously.

Down the road I plan to dig a little deeper and talk to parents who managed to function after they lost a child.  Grief, much like anxiety, demands your attention and stops your work and keeps you from thinking, creating or being able to connect with anyone or anything.

All combined they make finding a few minutes to jot down a few words, lyrics or brush strokes a little harder. And when the choice has to be made of following the muse or kissing a tear-stained cheek or shedding a few tears yourself, the muse has to wait.

I want to tell my story by asking other people to tell theirs.

Please check back from time to time or subscribe to get updates when new material is posted.

Until then, be well and I hope your day includes at least five minutes peace.
~Vickie

Monday, June 16, 2014

1 year 4 months and 1 day - June 16, 2014


Our plans to move to North Carolina fell through.  UNCG didn’t have the same program J was doing here in Maine and it would take two years there before he could graduate instead of the year he’s got left here.  The hope was to be around some family and maybe get some help with the kids.
We haven’t had a whole lot of interaction here in Maine. I keep justifying it in my head saying that it’s because we’ve changed so much.  At first we were the childless couple who had lots of free time to attend parties and volunteer together and as that changed, it was harder to like us or for us to be useful. But then I realized that friendships should last through those changes.  I don’t know if I have the energy to start over again.
On bad days I have no trouble seeing what the real problem is. I have a history and I expect too much and I’m weird.  At the core of the problem is that I don’t feel lovable and I’m too needy.
What a crock.
I feel like I’ve walked onto the set of Seinfeld.  There’s a small already established group and no matter what I do, I will be the ensign in the yellow shirt who gets killed off.  The one who ends up with a nickname and fades away like all the other episodes’ extra characters.
The closer I get to setting boundaries and speaking up when I’m uncomfortable, the worse things have gotten.  The list of things that make me anxious has grown since I lost Joe and it’s no longer a suck it up and smile type of situation.  Mostly because I think my feelings matter too.  Also because I have panic attacks that make me feel like I’m dying right there on the spot.  I can’t fake it anymore.
Maybe this is the part where I join a random mom and baby group and find babysitters on craigslist and start drinking every day when the sun goes down.  Or perhaps there’s a medication that can numb me out and I won’t give a shit what’s going on.  Choices choices choices.
That psychic lady I went to last year (the one who told me I wasn’t done having kids and that Joe’s spirit isn’t resting and he wants to return as a girl and that has only happened to two people in 20 years) explained that my partner and I are old souls and it’s natural for us to be isolated.
Translation: we’re not going to let you piss on our heads and tell us it’s raining.
And it’s not like we aren’t a fun couple of people.  We don’t hit our kids, we bring delicious food to parties, we wash our hands regularly, we play a variety of instruments, we don’t carry guns and we don’t force our opinions on others.
So why do I feel so alone?
Part of it might be because I lost a child.  The feeling that something is missing is not just pervasive, it’s suffocating.  I don’t expect anyone to make it up to me or fill that void.  I go to therapy twice a week and I keep my partner up for hours after the kids are asleep talking about losing Joe.  I am dealing with my grief privately and through this very public blog. What I need is a friend to share in my happiness. To be a friendly face for my kids.  Someone I can trust to hug my children and maybe have us be a part of their lives too.  I don’t care if someone has dogs or allergies or kids or millions of dollars and a horse ranch we can visit and ride the ponies for free anytime we want.  I’m not particular.
Just don’t come around when you’re sick.  And don’t tell me you were sick if you weren’t just to get out of something.  And please, for the love of God, don’t double dip in the sour cream.
More than anything else, I just wish I could find a friend who gets me.  Who understands that I’m more comfortable joking than actually talking about my feelings. That in spite of the hours I’ve spent with a therapist, I still communicate like a nine-year-old girl because that is who I am and that is probably when I stopped growing.  I might give you a ratty friendship bracelet and expect you to wear it and yes, I will be devastated when I see it in your trash.  Maybe that’s all I had to give.
I’m tired of being sad.  I used to be a lot of fun and what I want more than anything is to be around people who bring that out in me and in my husband.  We’re trying to get back there to show the kids mommy does more than cry over Joe in the bedroom with the door locked. 
That’s where we are right now.  Joe has been gone 16 months and 1 day.  It still feels like it happened last night.  We are happy with our two healthy boys and we hang on to every sweet little moment like it might be our last.  How the fuck do you come back from losing a baby?  Does the terror ever go away? Will the calendar ever just be a calendar again?
So yes, things are good.  And awful.  You know how it is when you have a new baby and a toddler and a baby who died.  How is that so hard to understand?

Saturday, April 5, 2014

After the rain - 1 year, 1 month & 21 days


This time last year our life looked like those pictures you see on the news after an earthquake or a flood or a train wreck - pure devastation.  After hearing from so many people that the first year is the hardest, I looked at February 15th as some sort of new beginning.  For a few days I relived every moment and when the day came, we chose to celebrate what Joe brought to our life.  We made a cake, we lit Joe’s memorial candles and hugged each other more than usual.

I had been told that after loss, sometimes it’s easier to get pregnant and the chances of a healthy baby are higher than normal - just the opposite of what I felt and expected.  I assumed my body had given so much to Joe.

This last pregnancy was smooth and uneventful as far as the baby was concerned.  On the outside though, I was a wreck.  It felt like this baby just got out of the way to let me mourn.  It was a long, difficult 39 weeks.

I changed doctors four times. I tried continuing with grief support but it got too awkward sitting there with a baby growing and who wants to hear from the preggo? What does she know about grief?  I tried fitting into the world of pregnant ladies but people were afraid of me as soon as I talked about Joe – as though you can catch stillbirth.  It was pretty lonely.

I had about a week of prodromal labor that I complained about in my last post.  At my last ultrasound, my fluid level was just a tiny bit off and I was offered an induction by the high risk doctors.  The baby still had not turned the right way and I didn’t want to force my body into labor.  On the way to the 39 week appointment, PJ decided he was ready to meet us.

My first labor was 36 hours.  Joe was almost seven hours but I had to be induced after we lost his heartbeat.  I didn’t know what to expect this time around.  From the first pain that buckled me over the side of the bathtub to “Okay Mrs. Morgan, it’s time to push” was also about seven hours. 

My birth plan was pretty simple – get the baby from the inside of me to the outside of me.  I hoped it would be natural like the first time and fast like the second time. I tried positive visualization each time I walked into the hospital birth center for yoga but I couldn’t see anything but an empty carseat and funeral homes in my future.

I had never met the resident doctor who was assigned to me.  We asked for a real doctor but I was in too much pain to argue when they started in with the teaching hospital speech.  I agreed to be checked for dilation and warned that if there was no progress, (meaning we were in for a long stretch of labor) we were going to want that doctor I had requested.  The attending was someone who wasn’t taking new patients when I called during pregnancy. But here we all were – together.

When the pain got really bad I felt Joe’s presence in the room.  He wanted us to meet his brother and he told me I had been through enough.

When it came time to push, I wasn’t feeling much of anything in that wonderful world of epidural numbness except for the emotions that drugs can’t touch.  I was afraid to push.  With the baby’s strong heartbeat pounding through the monitors, I knew he was okay and I wanted him to stay that way.

I’ve never been that scared.  And the feeling of that warm, wiggling baby on my chest holding my hand and breathing was the only possible way I could be reassured that THIS baby was okay.

Eleven weeks later, the panic still hasn’t melted away and the anxiety is still with me.  Months of terror and worry don’t disappear especially when there’s a history like mine of sexual, physical, emotional and psychological abuse that I was already working to heal.  Living on a newborn’s feeding schedule means I have to be extra careful to take care of myself since sleep deprivation amps up those OCD and PTSD symptoms.

I can tell you that these children of mine loving me so completely and unconditionally is better than any amount of therapy or medication.  I am becoming whole for the first time in my life.  Joe has helped me repair some of the damaged relationships in my life and he’s helped me reconcile the fact that some will never be fixed.  I’m still mad at that higher power but I can admit there’s something outside of my understanding that allows me to have this life and this happiness. For now, I pray to Joe and he answers.

If you’ve come across my blog looking for answers about the MaterniT21 or Trisomy 13, please know that my thoughts are with your family and that there are no right answers.  I don’t regret carrying Joe after we got his diagnosis.  It gave me some comfort knowing that he had the option to stay.  I was often overwhelmed just thinking of the care he would need but I believe I would have found a way to do whatever was necessary.

I gave into the fear and had the MaterniT21 this last time around and it ruled out some things but it didn’t make me feel better.  At 10 weeks, I hadn’t felt any movement or heard the heartbeat and that removes some of the humanness of the life that is growing in there.  After seeing how doctors treat mother and baby when those results come back positive, I don’t think it’s just for informational purposes.  There’s a push to terminate. Everything you need to know you can see on the 18-week ultrasound. I chose what was best for my family and what I could live with.  After having this experience of a Trisomy 13 diagnosis, judging others isn’t nearly as much fun.  And if someone hasn’t been here, he/she really doesn’t get it so those opinions don’t matter.

As for having a rainbow baby, it is easier to get up for those 4 a.m. feedings.  That healthy crying baby is music to my ears and sometimes I let him cry an extra few seconds to soak it in.  Diaper blowouts are still gross and I started yesterday morning wiping projectile spit up off my face but I was laughing through it.  My life is total chaos and I love it.  I’ve never been good at anything like I am at being a mom.  These guys make everything worth it.  Losing Joe put all that in perspective even on the days that I fall into bed exhausted.  We are still grieving but we are surrounded by love too. It’s a double-edged sword and the biggest risk you can take.  A baby can add so much and yet losing a child robs you of everything.  We were very lucky this time.



Wednesday, January 15, 2014

Eleven months / 39 weeks

Joe has been gone 11 months today.  I had been fixating on the fact that I’m not pregnant with him anymore and not focusing on the fact that this is an entirely new person we’re growing.  One of my care providers suggested that for this last month I take thoughts of Joe when they surface and put them on a shelf.  She reminded me I would never be able to forget but maybe I owed it to this new baby and to myself to focus on being pregnant for a little while.

I’m now 39 weeks along.  I had never heard of prodromal labor until now otherwise I would have been at the hospital quite a few times already.  It’s not like Braxton Hicks.  I had those in my first pregnancy.  They were irritating but I could tell when one ended and another began. I could load up on fluids or change what I was doing and they would go away.  Prodromal labor is the exact opposite of ‘oh your third comes out very quickly and much easier than previous babies.’  It’s been sporadically happening for about three weeks and steadily for the past six days.

It’s a lesson in patience and pain management.

I don’t know how many ultrasounds I’ve had.  When I hit a milestone or date that someone else lost their baby, I have panicked and rushed in to check on the baby.  We’ve seen so many 3D pictures, there’s really no element of surprise left.  We just want to see the baby on the outside of me breathing and moving.

I’ve decided that there is an entire industry out there that sets women up for disappointment.  The midwives and doulas and birth centers that say labor can be blissful and painless if you can just remove the fear.  One doula said she didn’t feel any pain at all on her last child – just sensation.  What a crock of shit.  And all the stats about quicker labors and easier deliveries – compared to what I wonder?  How can you possible gauge what a woman would have gone through?

Combine that with all the techniques that are out there for manipulating nature.  You’re supposed to trust your body and yet, you should also do 300 squats a day for a quicker easier labor.  If the baby is facing the wrong way, no big deal.  Invert yourself on some stairs to disengage the baby’s head from your pelvis and allow him/her to reset their position.  Breech baby?  We’ve got an herb for that.

I’m fucking exhausted from all the information.  You know another place that overloads you with information about how to do pregnancy CORRECTLY?  The medical industry. 

Both sides vehemently tell you that their side is right and if you listen and choose a side, your baby will ultimately be better off.

In this pregnancy I have yet to meet anyone who doesn’t have a bottom line – money.  My husband and I are students who lost a child less than a year ago.  We didn’t catch a break from a medical professional or a non-medical support person who was willing to help unless we had gobs of money to give them.  Up front.  Or from better insurance.

It’ll be okay if you can remove the fear from childbirth.  It reduces pain.  It reduces complications.  Here’s how you do it.

Think of something you’ve never done before.  Imagine how it will feel.  Now relax.

Or better yet, think of something you have done.  Erase any memories of pain or discomfort or violation that may have occurred.  There you go.  Simple as that.  Just relax.

I’m a little testy – can you tell?

I actually found a great clinic that has been so unbelievably supportive of my choices and the group of Nurse Practitioners keep reminding me this is my body, my baby and this is my experience.  I still haven’t met an intern or resident despite it being a teaching clinic. 

But I’ve been offered an induction in a couple of days if I want it.  My fluid levels are a tiny bit high and I qualify for induction.  I have a way out.  I have been given an opportunity to see this baby before natural labor kicks in and to put a stop to the prodromal nightmare I’ve been having all week.

What if the baby is not ready?  What if waiting means I never get to hold the baby at all?

How can I be expected to make a rational decision when all I see when I close my eyes is Joe’s tiny face?  And the faces of all those grief-stricken parents who wish they could go back in time and ask for an induction a few days earlier?

Trust your body.  Trust nature.  Trust the universe.

I trusted all those things less than a year ago.  I don’t know who or what to trust anymore.  I’m wondering if rainbow pregnancies are aptly named for the dismal rain that is constantly over your head for 40 weeks until you finally (hopefully) see the baby?  And there’s still labor to think about.  It’ll be easy peasy if I can just stop being afraid.  Thanks for the tip.

There’s a shred of something left – faith, hope, something - that Joe will guide me and hold my hand through this.  That’s my tiny beam of light.  I have given over control and realize that it’s out of my hands.  I’m trusting that Joe wants us to be happy.  That he wishes he could be here as much as we wish to have him back.

The one thing I took from that psychic medium  visit a few months back is that she said people we love who have passed on show up for the birth of a baby to help guide him/her into the world.  I’m looking forward to that part.  It could have been a load of hoohaw but I’m choosing to grab on to it.  It’s nice to know we won’t be alone.

And now we wait.


Sunday, December 15, 2013

Ten months - December 15, 2013


Joe is gone ten months today.  Taking out all the Christmas lights is like unpacking memories of the time we had with him last year.  When we put the tree up I thought my biggest concern was the unshakeable nausea.  By the time we took the tree down, we knew Joe had Trisomy 13 and were being told we would never take him out of the NICU if he even survived to term. 

It should be getting better with time but it feels more raw now than ever.  I can remember every detail as though it’s still happening.

It helps that my oldest is so excited about every little detail of Christmas.  He keeps catching me crying and asks “Are you sad again Mom?”  It’s almost as if each time I drift off, Joe sends me a little nugget to keep me moving forward.  Old Christmas songs that on a regular day would do me in, I now have a very musically inclined toddler singing along with his own lyrics.  I remember over the summer a few times that the rain would hold off until we were out of the park and I’d stop and thank Joe.

Now that I’m so very pregnant with Joe’s Irish twin, the anxiety is overwhelming.  It’s a good thing I don’t have a doctor who would take me seriously at this point.  It’s not the discomfort of having a five pound child trying to push an elbow through my belly button, it’s the knowledge that right this second, the baby is okay and healthy.  I would gladly submit to an induction or C-section.  Partly because there were only six weeks of the past 15 months that I wasn’t pregnant – and partly because I’ve heard so many stories about babies who were fine one minute and gone the next.  Patience is hard to come by.  And so is faith.

I have found medical care for the remainder of my pregnancy.  You’re gonna laugh.  It’s the clinic at the hospital that is made up almost entirely of residents and interns.  There are also a lot of wonderful nurse practitioners and attending physicians.   I have not met a resident yet.  Turns out – I do have a say in my care.  I was ready to throw in the towel and pass my body over for science but I do, in fact, have the right to refuse practice exams.  Even at a teaching hospital.  Even at a teaching clinic.

My blog is at a new home these days.  I’ve changed my name over to my partner’s last name and changed the blog address too.  Ten months ago the hospital wouldn’t release Joe’s body because the name on his death certificate didn’t match my last name.  It’s taken a while but my name is the same as all my babies now.   

My very best thoughts go out to all the loss moms whose stories have touched my life.  The thought that I should be shopping for two kids this Christmas lingers on my mind every time I see a sparkling light or a blade of snow.  This is a special kind of hell we are in and unless a person has walked in our shoes, they don’t get it.  So be kind to yourself, take the space and time that you need and pat yourself on the back for every minute you have survived without your baby.  All this talk of family and togetherness and gratitude and love this time of year – I can’t say I’m able to reach those heights.  But please know you are not alone in your grief or sadness or loneliness.  This sucks.  I have so much to be thankful for but not having Joe here with us – in a word – sucks.

One holiday at a time, one month at a time, one breath at a time – is all that is required of any of us.


Friday, December 6, 2013

November 23, 2013 - Nine months and eight days



Pregnancy is a time of heightened everything.  You’re more emotional, you can smell what the neighbors are having for dinner two towns over and your pants are just too damn small.

If time was on my side, I may have chosen to wait a little longer to have another baby.  I have not had a chance to really wallow in my sorrow over Joe.  I mean really dig down deep and fall into a depression that kept me in bed for days.  I don’t know if it would have even been possible with a two-year-old running around the house who insists I function even if at a most basic level of providing food, shelter and hugs on demand.

Instead I have done a more relay race type of mourning where the person handing off to me is running alongside and won’t let go of the damn baton.  The race is still going, we’re progressing but we’re never going to win anything in this state of limbo and hanging onto the past.

Joe is never going to be someone I let go of.  It’s getting easier to answer the question “is this your first?” and it’s getting easier to stay places where there are families with two little boys having fun together.

Sometimes I have vivid images of what my life should be.  What it would have been had Joe survived.  A life with a very sick child who couldn’t guarantee he would be here even one more day.  I wonder how or even if I could have dealt with that kind of dread.  For the seven weeks I carried Joe after receiving his diagnosis, I did not do so well.  I wanted to die myself sometimes.  I wanted to make everything better for him and I tried to be brave but I was scared all the time.

There are so many moments I’ve had with my two-year-old that I consider gifts from Joe.  At times it’s impossible to see a bright spot and not focus on the fact that he should be here with us.  But every so often, I hear myself laughing or feeling like my heart will bust right out of my chest because of something my oldest says to me.  They are messages from Joe that he wants me to keep going. 

When I imagine what it will be like to have a sleeping toddler cuddled into me and a tiny baby breathing against my cheek I’m overwhelmed at how lucky I am to even feel hope again.

It’s hard to roll over without assistance lately and I am so much bigger than I was on both my previous pregnancies.  I’m hungry all the time but I have a baby lodged in my stomach who insists I eat like a bird – small portions constantly.  They don’t go down right away and spend some time lodged in my esophagus with a cold, chemical taste.

I’m not enjoying every second of pregnancy. I promised I would but I’m not a twig and berries type of girl.  I find this to be a most unnatural state and when little one tries to come out through my belly button, it friggin hurts!  I’ve been pregnant for 15 of the last 17 months and I’m tired.  I would so love to have a drink of  Lambs rum with just a splash of Coke and lots of ice.

Poor me right?

I’m also probably not going to jump out of bed with glee at two in the morning to breastfeed either.  Shame on me.

If there was a way to channel my grief over Joe and create new emotions from the feeling of loss and betrayal, I would surely do it.  But it doesn’t work that way.  Being pregnant does not negate the fact that my son died.  It didn’t fix my grief.

I didn’t expect it to fix my grief.  I made up my mind that twenty years from now, I would not be able to live with making a decision based on fear of what happened with Joe happening again.  It was a one in ten thousand chance and we got it.  Waiting until I felt emotionally ready was something I knew wasn’t coming.  The only way out for me was to find a way to hope again.