Roller Coasters

People often refer to life as a roller coaster.  The IVF process is definitely fitting of that analogy.  The physical part of it has been a minor challenge—kind of like the Seven Dwarfs Mine Train.  It tosses you around a bit, has a few ups and down, and leaves you a little queasy: but it is tolerable.

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The emotional side is more along the lines of Expedition Everest.  Bigger climbs.  Steeper drops.  Gives you a headache.

Here’s a brief description or those who have not been (compliments of Disney’s website)

The Adventure Begins 
Board a weather-beaten train and ascend a series of rolling hills overlooking a serene green forest. Climb a steep incline and navigate through a ceremonial stone tunnel before reaching the summit. Once at the “top of the world,” hold on tight as you pick up speed and race inside the dreaded mountain.

An Unexpected Encounter 
Without warning, your train screeches to a halt: A broken and twisted track appears in front of you. Brace yourself as your train unpredictably begins to race backward into the darkened mountain, furiously swooping up into a double-looping turn. Inside the windswept passage, the shadowy figure of a growling creature can be seen on a cavern wall. It is the Yeti—the legend is real.

Hurl 80 feet down the base of the cursed mountain and swoop in and out of murky caves and along jagged rocky ledges as you race to escape the dreaded monster before he catches up with you.

Will you make it back to civilization safely? Or will the Yeti claim another victim?

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That damn Yeti.  You know he’s there, but he still takes you by surprise.

We started with 16 eggs after the retrieval.  Twelve fertilized.  Honestly, with each passing day I was waiting to be told none were viable. By day 5, which is when they biopsy them, we were down to four.  And then we waited again for the results of the genetic testing to come back.  We’ve waited for genetic tests before.  I remember where I was when I received the phone call with Zoey’s official diagnosis.  I was waiting for a similar call.

On Good Friday we finally heard from my doctor.  And three are healthy.  Now we must make decisions.  How many do we transfer?  Do we choose the gender or let someone else pick (yes, we already know we have two of one sex and one of the other).

It’s all just so…complicated!  Right now, those embryos are a frozen set of cells.  But that little set of cells was Zoey once.  I am again reminded how easily she could have left us at any point.  A millions things just slightly different and she never would have taken a breath in this world.  Had we done IVF then, Zoey would not be our daughter.  She would have been #4—the one that has chromosome abnormalities and has been deemed not healthy enough for transfer.

While I know deep in my heart we made the right decisions for Zoey, there’s always that little voice.  We’re in the same place now.  We will follow our doctor’s advice, we will think through all of our options and we will make the choices we feel are best for our family.  It’s why we did the genetic testing in the first place—after all of this we want a baby.  We are maximizing the chance of that little embryo to implant and grow.

Zoey was due on Easter.  She would have been three this May.  Maybe she has a hand in all of this.

We still have a long way to go—the roller coaster has not made its way back to the platform.  There are mountains to climb and twisted tracks to navigate.  And Yeti’s. But we still have hope.  Hope in three tiny little embryos.

Disney and beyond

I returned to Disney World in February to once again run the Princess ½ marathon in Zoey’s memory.  I’m not going to lie—it was rough for a variety of reasons.  I’ve been fighting this foot injury for months.  As a result, my training was sub par.  I also lacked a bit of motivation to run so that didn’t help either. I knew I could make it through—I could meander and still have time.  But as always, I still wanted to do the best I could and make my little girl proud.  The 10k was a Saturday morning and as I started out with about 99% humidity, I decided just to walk it and save my legs for Sunday.  Made it and collected my first medal!  Spent the rest of the afternoon lounging by the pool.  Sunday morning arrived bright and early.  That’s a lie. It wasn’t bright. Nothing is bright at 3am.  On the bus ride to the start line, I met a lovely woman who is a nurse at a children’s hospital.  We chatted for a long time about life, her patients, Zoey and how their hospital has now started a pediatric palliative care program.  It was really a wonderful way to start my day.  We separated when we arrived to Epcot and I headed to the corrals on my own.  The race starts in the dark, but the sun starts to come up just as I head into Magic Kingdom.  I got to see my mom as I turned the corner to run down Main Street and then it was through the castle!  I’ve probably described it before, but the 2nd half of the race is pretty boring—you’re done with the parks until the very end.  It’s mainly on a highway.  It’s hot.  There are some ramps that are unfortunate.  It’s also when my foot started to protest.  Zoey and I had a few talks and while I mainly walked from that point on, I finished upright and didn’t need to stop in the medical tent.  And I collected three more medals: the half, the glass slipper and the coast to coast.  19.3 more miles complete for my little princess.

Every year I’ve gone, I’ve known Zoey should be there too—that things should be different.  This year it just seemed to really smack me in the face. She would have been almost 3.  In the years before, her experience at Disney would have been–let’s be honest– be more about me . But at 3 she’d be really excited to meet Belle. She would recognize Mickey from the Disney channel shows.  And she’d think Marie the Cat looked just like her kitty at home.  Everywhere we went there were little girls her age.  And I pictured myself with her.  Holding her hand as we walked toward the castle.  Holding her in my lap as we rode Dumbo.  Convincing her we didn’t need to ride “It’s a Small World” one more time. And buying her souvenirs.   Zoey has ears from Disneyland.  A dear friend of mine had them made for her before she was even born.  But I never got her a pair from Disney World.  I don’t know why.  So I did this year. Pink.  With her name stitched on them.  And I had my picture taken with them in front of the castle.  And she should have been there. They’d be awfully cute perched on her little head.

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My mom and I enjoyed our time at Disney (Joe stayed home).  We visited all 4 parks in two and half days.  Rode our favorites (the Haunted Mansion for my dad).  Kilimanjaro Safaris.  It was insanely crowded, but we made the best of it and enjoyed our time together.  My mom is a trooper—she had blood clots around the same time as Zoey died and her leg has never been the same.  But I took her from one side of Epcot to the other and then to Hollywood Studios and she never complained.  I think I come from a tough stock and I’m so thankful she’s willing to join me on these expeditions.

I also had the opportunity to stop by the beach while I was in Florida.  I needed that time to refocus, decompress before heading home.  The impending IVF treatment had been weighing heavily on my mind.  I had a lot of anxiety about the shots.  While I don’t usually get squeamish about things like that, giving myself shots in the stomach just didn’t sound like much fun!  When I returned home I thought I was ready to take on this challenge. But things quickly fell off the rails.  It was just a bad week.  Things at work weighed on me.  I was distracted and disjointed.  I spent a lot of time beating myself up about the state of things.  A friend had to gently remind me that I was kind of being a bitch to myself.  And that I wouldn’t tolerate it from my own friends so why was I doing it to myself?

A few weeks ago I started the injections.  First up was Lupron.  And then I added Follistem and Menopure. If you want a good laugh, google “how is Menopure made”.  Most nights the injections went well.  But some did not. I bled. I cried. I freaked out.  Sometimes I had to give myself extra injections because I couldn’t find the right syringe or the needle freaked me out and I wanted to use a smaller one.  Overall it went better than I had expected, but I don’t recommend it “just for fun”.  The real fun began when I went in for bloodwork and ultrasounds last week. These aren’t the fun ultrasounds where they goop your belly and show you a cute little peanut kicking around.  I won’t go into details.  But it sucks.  The ultrasound tech was measuring follicles at one of my appointments and I started to flashback to laying there the first time they started measuring things with Zoey.  The time we found out her nuchal translucency measurement was too high.  And then all those other times they were measuring amniotic fluid or head size or a million other things.   I didn’t want to cry at the office again so I kept it together. I’ve been concerned that the office thinks I’m a train wreck (they would not be wrong but they don’t need to see a full on display!).  My body responded well to the treatment and yesterday they retrieved the eggs.  Again, I won’t go into detail on how they do this, but feel free to google it like I did (mistake).

They retrieved 16 eggs. Many more than what I expected. They were fertilized yesterday and we’re waiting to hear a count of how many took.  They will sit in an incubator and on Day 5 they will be biopsied and then frozen.

I’ve often talked about hope and how we have had to hold on to it through this entire journey.  That is no different now, although I also balance it with a healthy dose of realistic expectation (ok, maybe more than a healthy dose).   It occurs to me that everything comes at a cost.  Yes, we have hope.  But it isn’t free.

Obviously there is a financial cost.  And while my insurance is covering most of it, I’ve still handed over my credit card multiple times for co-pays.  And we are lucky.  Many couples have to pay for this out of pocket.  It creates a tremendous amount of stress.  Do you take out a second mortgage? Dip into your savings or 401k?  Loans?  How many times do you willingly go into debt for this chance?  Success is not guaranteed.

Drugs like this will also take a physical toll on your body.  My side effects have been relatively minor.  I’ve been left bleeding and bruised.  Some women have much more serious side effects.

Emotionally this has been quite a journey too.  Balancing hope with realism.  Trying to stay positive without getting our hopes too high.  Waiting for the next phone call that could change everything.   All things we went through with Zoey.  And yes, it is worth it.  We wouldn’t be doing it otherwise.  But it is difficult.  And then there’s all the moral and ethical questions.  When does life begin?  Think that’s an easy topic?  If so, you’ve clearly you’ve been hiding in  cave somewhere!  Science is amazing.  It’s also terrifying.

I’m not saying any of this to get pity from anyone.  We knowingly and willingly went into this journey (although multiple times the unfairness of it all has hit me square in the face).  It does give me a new perspective and I feel for the other women that are on this journey too.

We potentially have difficult decisions in our future.  But until then, we wait.  For now, everything is completely out of our hands.  And our hope is with 16 tiny little eggs in a petri dish.

**Update since I typed.  We now have 12 embryos. They will be left alone to grow for a few days.  We don’t expect all to make it to the stage where they can be biopsied, but we’re starting with much better numbers than I anticipated. Quite honestly, I am not used to a doctor calling me and letting me know they have “good news” so it was a welcome change!

IVF

Last week, Joe and I attended the IVF orientation at our fertility specialist.  That is the path we’re on now.  I did not want to be here.  I never imagined myself in this place.  Before Zoey, if we’d come to this spot I don’t think I would have been sitting in that conference room learning how to give myself injections in the stomach.  But here we are.  I wish I could tell you that I left full of hope and promise that within the year we’d have another little one.  I didn’t.  I left feeling completely overwhelmed and even more guilty than I did before.  Before you say “stop, you can’t feel that way”, remember that we’ve had this conversation before.  It’s no different than the blame I assign myself over Zoey’s death.  Sure, the rational part of my brain says that this is not my fault.  But the emotional side says otherwise. I have a desperate need to assign some sort of reason for all of this.  For the fertility struggles. For her death.  And I know deep in my heart that I will not receive an answer.  It’s just not a switch you can turn on and off.  The class wasn’t the only reason I’ve been feeling like I’m at fault.  I’ve done a little homework and research on this fertility issue.  Our case is considered “unexplained”.  I don’t have endometriosis.  I don’t have PCOS.  I don’t have blocked tubes.  There’s nothing physically preventing me from getting pregnant.  So it must be something I’m doing.  Did you know that women who are obese can have a harder time getting pregnant?  Yep. I fall in that category.  If you run the numbers, I fall into the obese category on the body mass index charts.  I should do something about that.  Except I really, really like ice cream.  And cookies.   And doughnuts.  Which leads me to not only the cause of my obesity but another factor in infertility.  Too much sugar.  Eating too much sugar can negatively affect your fertility.  I’m an emotional eater.  And do you know what my emotions have been like for the last 4 years or so?  Which bring me to chronic stress and fertility.  But let’s not stop there.  One of the things I do to control my stress is to workout.  But that can negatively impact fertility too.  In the class they mentioned that they tell you to “shut it down”.  Walking is fine.  At this point in the class Joe is giving me the side eye.

Seriously.  Google any of these: obesity and fertility.  Sugar and fertility.  Stress and fertility.  Exercise and fertility.  It will make you want to claw your eyes out.  And will make you wonder how any of us came to exist on this planet in the first place.

Of course the only logical conclusion is that it is completely and totally my fault that I cannot get pregnant.  And here’s the real kicker: if any of my friends told me these things about their own struggles, I would also be the first to say they are ridiculous and it is definitely not their fault.  So why can’t I give myself the same grace?  And why is all of this so damn hard?  We had pretty well given up on the idea of pursing IVF.  Four months ago my insurance didn’t cover it and we’d decided that the $25k self pay option was not for us.  And I was good with that decision.  I don’t have an overwhelming need to carry a child.  I’d be content growing our family in another way.  Then my insurance coverage changed so I feel like the fiscally responsible decision, and the one Joe is most comfortable with, is giving IVF a chance.  The process is terrifying to me, though.  If I thought there was a better chance of it working, maybe I’d be more comfortable with the process.  I’m not there.  I don’t think it will work. I think I’ll load my system with all of these drugs, give myself shots for weeks, go through the process of egg retrieval and it won’t work.  Either the eggs won’t make it to the implantation stage or we’ll discover that they are all genetically flawed.  And we’ll be left disappointed just like I have been every month for the past two years.  I’ve been pretty open with others about our journey so each time I say “we’re going to try IVF”, the other person’s eyes light up and they get excited.  And there’s a little part of me (ok, maybe a big part) that wants to slap some reality into them.

It sucks.  I don’t have that kind of enthusiasm.  Or that kind of hope.  I know I should probably go into this in a better frame of mind.  But I also feel like we’re running out of time.  And my fears of carrying a child as I become an even more advanced maternal age will not be lessened as I get closer to 40 (yes, I know Janet Jackson had a baby and she’d over 50.  That will not be me).

We start the process next week.  Phase one will take about 6 weeks.  First up is birth control (that one surprised me too).  Then a serious of shots.  Then the retrieval.  We will be testing the eggs before implantation so if/when they get to that point of testing they will be frozen.  I’m not sure how much I’ll share.  I just don’t know where I’m going to mentally with this at any point.  But I will ask that if you do send out prayers, good vibes, happy juju—whatever it is you do—I’ll take it.  Because I certainly don’t have much of my own right now.

In the orientation, there were photos of the eggs growing and forming.  And it reminded me what a miracle it was that we ever had Zoey.  She really should not have lived at all.  A million things should have taken her from us before she took that first breath.  But she did live.  And that’s still the most amazing gift I have ever received.  When I feel completely hopeless in this struggle, I look at photos of her and those beautiful blue eyes and just a glimmer of hope is restored.  I know another child would never take away the loss of her.  But I so desperately miss holding my daughter that I am willing to go through all of this for even a small chance of having moments like that again.

 

The Dance

 

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I have two cedar chests in my house.  One holds many of Zoey’s things—her blankets, the shell we received at her baptism and a mold of her little feet among other mementos.  The other, smaller, one holds what I have left of my father who died 19 years ago today.  His auxiliary police badge, a pin with F-14 fighter jets, a Mickey Mouse watch and a batman key chain (the key chain and how I came to possess many years after my dad died is a good story for another day).  Just a few items, but they say so much about who he was.

I heard a song on the radio the other day.  This one was from Brad Paisley although the sentiment is not unique.  He talks about writing a letter to his younger self.  What would he say?  And it made me wonder—what would I say to my younger self?  “Buckle up, it’s going to be a rough ride”?   Or “oh, you think THIS hurts?  Just wait”.  Yes, I imagine myself being snarky to my younger self too.  But would I really want to warn myself? Would it alter the choices I made?  Because I’ve had some beautiful moments mixed in there.  And I certainly wouldn’t want to pass those by for fear of being hurt.

In that smaller chest, I have a few pieces of folded paper.  One has the words I spoke at my father’s service.  Another is a piece I wrote for a program for the Relay for Life a few years after my dad died.  I pulled it out last night as I looked through that little chest. I can’t remember the last time I read it; but looking back, it kind of is my letter to myself:

My sophomore year of college, my father was diagnosed with cancer.  I still find the words hard to believe at times.  My family began the fight and never believed he would leave us.  We tried to keep things as normal as possible, but there were always nagging signs of the battle.  The house was filled with medical equipment and my parents would leave for weeks at a time searching for treatment in Chicago.  Despite the horrible circumstances, my father’s fight with cancer also brought some amazing moments of love, courage and survival.  Those moments now help me understand why my family had to face the struggle.

One night during the two year battle stands out as a defining moment of my life and of my family’s love.  Though at the time I did not realize the impact the event would have on my outlook on life, I look back and understand what the evening meant.  My father was being recognized for 25 years of service at his company Christmas party.  My mother, father and I attended.  After dinner and the ceremony, the band started to play.  My father asked me to dance with him.  For a few minutes, only my father and I were there.  We danced, we talked and laughed and simply enjoyed each other’s company.

As it turns out, that was our last dance.  My father died a year later. He will miss my wedding day and I will have to cherish that night as our father-daughter dance.  At my father’s funeral, I told the story of how my father and I danced for the last time.  I related it to the Garth Brooks song “The Dance”.  As the song says, “I could’ve missed the pain, but I’d of had to miss the dance”.  My family suffered a great loss and my father fought through an unthinkable amount of pain, but the moments we shared brought us closer together.

I will never know why my family had to suffer and why my father died when many are spared.  However, I do understand that the battle we fought showed my family what strength, determination and love can conquer.  I know that evening would have been just another night, but in the back of our minds we knew that we may not have many more nights to share.  We were able to share a brief moment in the middle of all the pain.  Though I don’t remember the details, the song or the band, that dance helped me understand the tragedy that comes as part of life and shaped my attitude towards the events I must face.  Life is a dance.  You only have a few brief moments and then it ends.  You have the choice to sit out or take the chance.  Sometimes the music ends before we want it to, but we are better for the time when we let another person into our hearts.

My father fought for his life, now my family fights to keep our lives together and his memory alive.  We believe that when one person is diagnosed with cancer, the family is diagnosed.  Upon his death, he left Sharon, his wife over 25 years, Bryan, his son, and me, his daughter.  We survived and continue to fight.  Each day, we take a deep breath and a few small steps.  Despite all the terrible things that came with the disease, we focus on those moments that brought the family closer together.

I may never know what that night meant to my father.  I do know that for me, the dance a father and his daughter shared will last a lifetime.  I remember that night when I’m alone and scared, tired and weak and know that in his arms, I am stronger.  I also know that on my wedding day, he will lead me out on the floor, put his hand in mine and we will share yet another dance—if only in my heart.

“I could’ve missed the pain, but I’d of had to miss the dance…” The song tells me to live each moment and to cherish the people I have in my life.  I know that I will have pain and hard times in my life, but all those times are worth fighting through so that I can dance again.

Dad, I hope you are dancing with Zoey now.  I miss you both.  I love you both.  And please let her have extra ice cream (but no Tang sandwiches!).

Capture Your Grief Day 29, 30 & 31

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I’ve missed a few days again.  This weekend was both busy and emotionally rough.  So I’m going to combine a few topics and just post this final one from the Capture Your Grief project.

Day 29: Give Your Love Away

Around this time last year, I attended a retreat for bereaved mothers.  I returned this year as a volunteer for a few hours.  Moms of every age were there.  Moms who lost their kids as little ones. Moms who lost them as adults.  Poor.  Wealthy.  Black.  White.  Adopted.  Lost to disease, accidents, murder.   The common theme I heard over and over just like last year  was “this is a safe place for me to grieve”.  Do you know what the means to me?  It means so many of these moms don’t feel safe to express these intense, heart wrenching, soul crushing feelings anywhere else.  And keeping all of those in will only create more pain.  I wish our society, our family and our friends didn’t shy away from this pain.  I know it’s scary.  I know it’s hard.  But letting these moms feel safe with you is an amazing gift.  So if you’re wondering what you can do for a mom that has lost her child, just be there.  If you’re wondering if you should call them… call them.  If you are wondering if sending a note will just hurt them more, rest assured that it will not.  I know you don’t know what to say.  But “I’m here.  I love you” is plenty.  You don’t have to fix them.  In the past month in the town I live, at least two young lives have been taken.  And we’re to the point in their journey where people have probably stopped calling.  Stopped dropping off food. Stopped sending flowers. But that family needs people now—probably more so than they did the first few days when life was a fog and they were surrounded by people.  Maybe you’ll text her and don’t hear back.  Please don’t let that stop you.  Maybe she’s curled up on the floor of her closet sobbing, but that little vibration from the phone gives her the strength to sit up.  And maybe she doesn’t have the energy to say anything back.  But I know it will still mean something to her.  It means the world to me when people reach out to me—especially now two years in—and let me know they still think of me and Zoey.  Because all of this is hard. It’s so hard.

Day 30: My promise to you

My sweet baby Zoey, my promise to you is to hold on to the love we shared.  To continue to show that love to you and to others.  To still believe there’s beauty in the world.  To still laugh.  To look for the light even when the world seems so dark.  And to hold on to hope.

And now these three remain: faith, hope and love. But the greatest of these is love.

Day 31: Sunset Reflections

I broke down over the weekend because of Halloween.  Growing up, Halloween was one of my favorite times of year.  It’s when I really spent time with both my dad and brother.  My dad would take Bryan and me to Six Flags for Fright Fest (my mom was banned after an incident on the Screamin’ Eagle).  We’d ride roller coasters and go through haunted houses.  And just be together.  My brother and I have very little in common.  But we had that.  And I miss it.

And this year, instead of choosing costumes and taking my little goblin to a trunk or treat, I took a Mickey Mouse pumpkin to the headstone at the cemetery.  Not because she’s there—but because that’s all I can do as her mother.  And I’m once again reminded how I’ve lost every memory of her I should be making.

For the first time since Zoey died, I handed out candy.  And it’s been hard (there was a particularly adorable little fox that stopped by and about broke my heart).  But I’m sure Zoey would want us to participate.  And like I said, it’s my promise to her to keep living. To keep loving.

Capture Your Grief Day 26: What Heals You

Why?  The question I immediately asked when we heard Zoey’s diagnosis.  Why her? Why us? Why this?  But after we lost her, I gradually began releasing that question.  Maybe it was simply the passage of time.  Maybe it was because I was tired of not receiving an answer.  And the reality is, there is no answer.  At least not one I could ever make sense of in this lifetime.  I’m not saying the question doesn’t bubble up now and then.  It does.  But it isn’t as consuming as it once was.  Instead my focus is on making this a beautiful life. Honoring Zoey’s life.

What heals me is an hour at the gym where I can try to regain the strength and confidence in the body that I feel has been betraying me.

It’s the sand in my toes and waves lapping at my ankles in the place where I feel peace.

It’s in realizing that the triggers will always be there, but that I can let them in, embrace them and let them move me.

It’s in holding my cousin’s little girl against my chest and kissing her head and allowing myself to love her completely even though she reminds me of everything I’m missing.

It’s in forgiving myself when it takes me time to remember the little details of Zoey’s life.  My friend has a new cat.  Fluffy, white with pretty blue eyes.  It took me flipping through pictures to remember that Marie the cat from Aristocats was one of the very first stuffed animals we bought Zoey.  It was with us at the hospital.  At first I felt like a terrible mother because that wasn’t the first thing that came to mind.  It’s remembering that this life is constantly launching things my way and it’s impossible to process everything at once.  It’s letting the memories flow instead of avalanche.

It’s in giving myself a little grace.

It’s in this blog and holding on to hope that even though I’ll never understand why we’re in this together, the other moms and I can lift each other up. Cushion the fall.  And sit in the darkness together for a little while if that’s what’s needed.

It’s about knowing she’s always with me, woven through every moment of our lives.

It’s in saying her name and telling her story.

And it’s in gradually learning that the broken pieces don’t need to fit back together perfectly.  Because the cracks allow the light to shine through.

Capture Your Grief Day 25: Finish these sentences

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I wish she’s somewhere beautiful. I wish she was still here.

I remember the shock and amazement of seeing the double line.  I remember holding that sweet little princess against my chest and how it just felt right.  I remember sweet baby noises and kissing her little nose.  I remember hearing her heartbeat for the first time.  And the last.

I could not believe how easily I just fell into the rhythm of being her mom.  And how the most abnormal of circumstances just became our everyday.

If only I had one more day.  One more chance to snuggle.  One more kiss.

I am trying.

I am holding on to hope.

I am Zoey’s mom.

Capture Your Grief: Day 23

I missed a few days of the Capture Your Grief project while visiting family in Colorado.  After I returned, I’ve had a really hard time focusing because another topic has been weighing heavily on me.

This post will upset some people and I’m sorry.  I’ve been writing and rewriting this for days.  I showed it to Joe and he basically told me I shouldn’t post it.  But I can’t take it anymore.  Staying silent isn’t going to work for me.

And let me just tell you now: this IS NOT A DEBATE.  I do not want my post turned into an abortion debate. If that happens, it will be clear to me that you have missed the entire point of what I am about to say.  What has become abundantly clear to me over the past few days is that empathy—what it means and how it works is lost on social media, and I fear in general.

After the most recent presidential debate, social media has not been a safe place for me.  The words “incompatible with life” show up constantly.  And every single time I hear them, I am pushed back into the darkness.  The day we heard those words. It is excruciatingly painful.  It knocks the air from my lungs just like it did the first time I saw the ultrasound tech’s face when she knew something wasn’t right. All we wanted that day was to see our little one squirming around on an ultrasound.  Not even in our worst dreams did we expect our lives to be forever shattered by those three words.  And I want to scream.  Zoey lived.  Not long enough. Not nearly long enough, but she lived.  And we loved her long before she was born.

And then there’s the posts with very graphic and disturbing photos & videos of late term abortions.  And I’ve seen parents who chose that option called murderers.  I can’t even begin to tell you how angry this makes me.  If you want me to believe that all human lives are important to you, try not calling a family who has made the most unimaginable decision for their family a murderer.  Unless you were in that room with their doctor you have no business judging them.  I’ve met moms that were in this position.  I know the horror.  I’ve seen them talk about it—I’ve seen the heartbreak in their eyes, their voices trembling as they speak.  And I guarantee you that the majority of them are shell shocked, traumatized and suffer a kind of guilt you can’t possibly fathom.  I know this because I was in that room when I heard my daughter’s diagnosis was “incompatible with life”. And I know that you cannot possibly process what is happening. And yes, I made the decision to carry my daughter.  Aborting her was not an option I considered. But that was also never recommended to us.  And we were told that Trisomy 18 was not painful for her.  Had circumstances been different, I honestly don’t know what kind of discussions would have happened between me, my husband and our doctor.  You realize there is a group of people out there that think we didn’t do enough for Zoey because we chose hospice for her?  Because we did not do surgery after surgery? And do you have any idea of the kind of pain that causes me?  The guilt.  The fear that maybe they are right?  It rips me apart.

Seeing all of this played out over social media is eating at me. These are real people.  Real babies.  With real issues that you cannot even begin to comprehend.  Because you don’t want to go there.  Trust me.  It’s easy for these bloggers to sit behind a computer and judge these parents because they are so sure they would not even consider that option.  And they may believe that 100%.  But I’ll tell you from behind THIS computer is a woman that has been there.  And she’s telling you that you really don’t know.  The anger, the hatred does nothing but cause more pain. It is not changing anyone’s mind about anything.

I will tell my daughter’s story whenever I can. It is a love story.  But not because I want to pile on the guilt to anyone.  Carrying Zoey was beautiful, amazing, and wondrous.  I do not regret it for one moment.  And yet I still carry guilt.  I still wonder if I made the right decisions for her.  I still fear other people are judging me.

The point is, you do not have to agree with another person’s views, choices or beliefs to show empathy. And I want families that sit in those rooms, horrified at the diagnosis they have been given to know that there are people out there who love them.

I hope to always show compassion.  Love.  Empathy.

Capture Your Grief Day 13: Dear World

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Today’s prompt for Capture Your Grief says to share whatever is on your heart.  What you want the world to know about your kind of grief.  Here’s a glimpse at what’s been weighing on my mind.

It’s complicated.  Grief is complicated.  Infertility is complicated.  The idea of expanding our family beyond Zoey when we really only wanted one child is complicated.  It’s all layered together.  Connected. Intertwined.  I can’t compartmentalize the experiences.

We took a break from fertility treatments over the summer.  I don’t think saying I’m tired can fully encapsulate how I feel about this process.    After more than a year of treatment and tracking with no success, we moved on to IUI.  Between appointments that I was on my way to when I received a call from the office kindly saying “don’t bother to come” to a meltdown in the office before our first attempt, it was a hot mess.  After the failed attempts, it was time to go back and sit with our doctor to discuss next steps.  I’ve been weary of IVF.  And now I’m even more so.  I thought were finished with the mentally exhausting appointments with doctors.  I was wrong.

They take an egg.  They fertilize.  Simple, right?  Not so fast.  There are many decisions you have to make along the way. Ones I never thought I’d grapple with.  But then I had Zoey.  And she changed everything.

I don’t want to make choices about selective reduction. Genetic testing. Do you implant if they find out there is something wrong?  How many do you implant?  What happens to the eggs that aren’t implanted? Do you donate them to another family and then live with the knowledge that more of your biological children could be out in the world? And yes, we could leave some of this up to chance just like you would if a pregnancy would occur naturally.  But should we knowing our history?  And my age?  They say “odds are”, but we’ve fallen on the crappy side of those before.

All this at the low, low cost of about $25,000 per attempt with no guarantee.  My current insurance doesn’t cover any of it.  I feel guilty for putting a cut off price on a child.  But life has given me perspective on things and I don’t know if that’s the responsible decision for us.  Even putting the cost aside, I’m not sure IVF is the right choice for our family.  And to be honest, I’m scared of being pregnant again.  I know too much now.  I’d basically put aside pursuing that option until I received an email from our corporate office hinting that in the new year they may start covering more progressive fertility care.  Now it may be back on the table, but we have to wait for more information.

I actually thought all signs were pointing to adoption.  I started preliminary research.  And it isn’t any easier. There are success stories.  And horror stories.  It could take 2-3 years.  You have to put together a dossier.  And you have to do a home study.  Where someone comes into your home and asks you about your past, your family background, your relationship, your support system, beliefs on discipline and structure.  It is overwhelming and terrifying. Because what if they look at us and think we’re just too much of a mess?  What if they think we haven’t handled our grief well enough?  What if they think we’d be terrible parents?  What if nobody chooses us?  And it does make you think—how would we incorporate this new child into our lives?  How would we explain to them that they not only have biological parents out there in the world, but that they also have a sister they will never meet because she died?

And then there are more decisions.  Are you willing to accept a child of a different race? Age? What about disabilities?  Will you accept a child with a cleft lip, club feet (sound familiar?), and a host of other conditions both physical and emotional?  Again, how do you make those choices? Am I a terrible person if I say no?  I love Zoey unconditionally. I loved her little feet and lip and all those little things that were a sign of her condition but made her—her.  But just what conditions are we open to choosing to bring into our lives?

I’m sure I do not fully understand the process.  I know I’m missing pieces.  That’s what happens when you’re exhausted.  And when you thought you were finished with really difficult decisions.  If you have to choose whether or not to do CPR on your infant when they are born, if you have to choose hospice for your newborn, if you have to make these choices, you should be free from all other decisions including where to go for dinner.  Maybe this process wouldn’t feel so overwhelming if I didn’t already feel like I’ve been beaten down.  If I didn’t constantly have to reassure myself that I did what was right for my daughter.

I don’t want to be going through any of this.  I just want her.  I miss her.  I often lay at night waiting to fall asleep with the weight of grief pressing on my chest instead of my little girl.  But I also don’t know how to give up on the idea of having a child with me.  One to make cookies with. One to greet me at the finish line at the Disney race I do for Zoey.  One to watch take first steps and to tell me they hate me when I don’t let them take the car.  I don’t want a replacement for her but I love being her mom.  I’m not sure how and when to give up on mothering another child.  And I think Joe is an amazing dad.  It’s not fair that I can’t give that experience to him again.  I have to try really hard not to dwell on the unfairness of all of this.  I think we’re good people.  We were good parents to our little girl.  Why didn’t we get to keep her? Why don’t we get that chance again?

I honestly don’t know where we go from here.  Or how to find the energy to decide.

Capture Your Grief Day 12: Lemons + Lemonade

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Seeking blessings in the midst of grief does not diminish the pain.  When we learned Zoey had Trisomy 18 we had to shift our focus away from the devastation to making the time we had with her as beautiful, meaningful and amazing as possible.  My time with Zoey brought a deep and endless love to my life.  The best way I can honor that love is to keep looking for ways to once again find beauty and meaning in the messy world where I now live.