Trying…

Day 3: Trying to conceive.

It’s been 13 months.  I remember thinking when we decided we would try again that it would be easy .  How the hell was I still so naive after everything we’ve been through? But I thought my body would know what to do (that’s what you hear, isn’t it?).  After a few months went by, I decided to go back on fertility medication and undergo further testing.  Everything looks fine.  But still nothing.  Every month I continue to take medication and track and get blood work and hope.  We were prepared to undergo IUI in March.  On the way to the appointment, they called and basically (and more delicately) said “Don’t bother”.  And now we wait again.  It’s incredibly frustrating.  It’s exhausting.  I feel like a complete failure.  And honestly, I wonder if these are the signs the universe is sending me and I’m just ignoring them.  We’ll try IUI for a few rounds. If it doesn’t work, I’m not sure we will pursue other options.  IVF is expensive and it isn’t a guarantee.

People have asked if we’ve considered adoption.  We’ve had brief discussions about it. We respect each other enough to understand and appreciate that we might not be on the same page about it and would never pursue anything that we both are not completely committed to.  Because it’s not like you go to Target and pick out a baby.  There are plenty of horror stories about failed adoptions.  I know there are also plenty of success stories.  But there are plenty of success stories about IUI and IVF—that doesn’t mean it’s OUR story.  It’s also expensive and while you hate to even make that part of the discussion, it is reality.  It would be irresponsible not to take all factors into consideration.  Right now I feel like we’ll have to cross that bridge at another time. For right now, we’re still pursuing a pregnancy.  I fear I will get completely overwhelmed if I try to walk down too many paths at one time.

And honestly: I’m tired.  Everything has a financial, physical and emotional price.  We’ve had enough.  Everyone agrees that losing our child is the most we should have been put through, right?  You can argue these trials are meant to make you stronger.  That they show how tough you are. That they show how much you want it.  But that’s total bullshit.  If we decide to stop all of this, it won’t be because we didn’t want another child badly enough.  We carry the grief of losing Zoey with us daily. And it’s heavy.  Sure, some days we feel stronger.  But we have to carry it forever.  And I can’t help but know that even if we do get pregnant or adopt, we could lose that child as well.  There comes a time when you realize that you are completely exhausting yourself emotionally.  We both realize that there’s a possibility  that we will not get to raise any living children.  If that’s the path meant for us, we will feel the loss of that dream.  But we will find joy in other ways. I know that.  But it doesn’t make the process any easier.

Day 4: Today I feel….defeated.  Month after month of disappointment.  I know I’m in one of those “dark” places right now.  And I’m having trouble shaking it.  It’s difficult to make decisions.  And it’s difficult to feel like you are putting the rest of your life on hold until you know what’s going to happen. And I don’t understand it. None of it.  I don’t understand why we lost Zoey. I don’t understand why it’s so hard for us.  Why do terrible people get to have children when they will abuse, neglect or kill them? Why are there so many unintended pregnancies?  I don’t think you can look at our story and doubt our dedication or our love.  So I’m giving myself permission to just feel crappy.  I try so hard to stay positive.  To always look to hope.  But that’s exhausting too.  And frankly, I should be allowed to be honest about the bad days (or weeks).  And I don’t want to pretend just so people think I’m healing or coping like I “should”.  All of this sucks. That’s my reality.

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Further proof I can smile and cry simultaneously: Miles and Matilda were at the zoo and stopped by Zoey’s brick.  They have a sister named Hattie who is with Zoey.  Their mom and I like to think Zoey, Hattie and Evey are best friends. We just wish we could watch them play.

 

 

Trisomy Awareness/PAL

Apparently March brings us both Trisomy Awareness month and Pregnancy After Loss Awareness week (PAL).

I believe I’ve discussed my awareness of Trisomy 18 before.  Got it.  I’m aware.  It sucks.  And there’s not one thing you can do to prevent it from happening to your child.  I suppose that’s not the point exactly.  I suppose people could become aware that some children do live past their first birthday.  I’m sure awareness is also important in knowing that you do have choices in whether or not to proceed with your pregnancy after diagnosis.  Here’s where things get tough to discuss.  We chose to continue our pregnancy.  It actually wasn’t a choice.  I never considered termination.  But I understand those who do.   Many are pressured by doctors.  Many are told that’s what they should do.  Many think that’s their only option.  Many believe that is the most loving thing they can do for their child.  I empathize with the place they are coming from when they make that decision.  I know we made the right choice for our family.  And I will tell our story a million times and hope that it makes a difference to someone.  Which then leads to the choices that are made after your child is born. We chose hospice for Zoey. I fear that others will look upon us and think we didn’t do enough for our daughter.  Because what is that saying that goes around “your one job is to keep your child alive”?  Well that makes me feel like a complete failure. I have to remind myself that our story was not one of failure.  Zoey was loved every minute of her life.  Of course I would do anything for my child.   But sometimes that means letting go.  It is a decision I will wrestle with for all of my life.  But in my heart I know we chose what was best for our daughter.  And every other family does the same. I understand they may make different choices for their child.  If that means they intervene more.  If that means their child has surgery. If that means they spend time in the hospital.  If that means they just hold them for whatever precious moments they have. Parents are making decisions out of love.  Only they know everything about their child’s condition.  Only they know what choices they can live with.

Now on to Pregnancy After Loss Awareness Week.  No, I am not making an announcement.  But I am choosing to participate in one of their photo/writing projects.  Because even “trying” after our loss is different from when we tried to get Zoey.  I decided to participate because we’ve made it known that we are trying to get pregnant again.

Day 1: Loss/Baby that Died.

Our little princess Zoey.  Blue eyes.  Soft little bunny feet.  The most amazing little person.  I am grateful for every moment I spent with that perfect little child.  There are moments I think my heart will cease to function from a broken heart.  I ache for her.  But I’ve never regretted having her.  I am on this path of “after loss” because of her.  And I so wish I wasn’t for so very many reasons.  If she was here we likely would not be trying for another child.  I only wanted one. I only wanted her.  It’s something I struggle with.  Because it makes me feel like we’re trying to replace her.  And as much as the rational side tries to beat that into me, it still slips in.  In the end, if it is not meant to be and we just have Zoey—she is enough.  I will always have her.

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Day 2: Courageous Mama.

I’ve never felt courageous.  Not while I was pregnant and not now.  I’m terrified.  I am scared of what getting pregnant would mean—the anxiety. We tried so long for Zoey only to have her ripped away from us.  We found out so early in pregnancy that I don’t know what it’s like to just be pregnant.  Because every moment of my pregnancy I was scared I was losing her.  Every appointment with my doctor I thought that would be the one when they told me she was gone.  Going in for my induction was not the normal anxiety I’m sure other moms have.  The possibility was so very real for us that we could be coming home with empty arms.  And there are moments I think we are absolutely insane for wanting to go through this again.  The fear of losing again.  I know that’s a real possibility.  So no I don’t feel courageous.  I’m scared of getting pregnant.  And I’m also scared of not being able to.

But this prompt was supposed to be about why I am a courageous mama.  If I really look at it, I suppose courage doesn’t have to display itself with a roar. It can come when I don’t think I have the strength to keep going, but take a step anyway.  In the dark moments when I don’t understand any of this.  But believe in hope anyway.  And I do still believe in hope.  And I believe in love.  And I believe both are worth the risk.

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Flashbacks

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We had to let one of our furry companions go.  Holly had been with us for about 11 years.  She found her way to my grandma’s house one afternoon and I just had to let her move in with me.  She was a very sweet cat and loved people (especially our pet sitter who would always brush her and give her extra attention).

It was a further reminder that nothing will ever be the same after losing Zoey.  We’ve had to let pets go before.  I’m an animal person, adore my critters and it’s always been extremely difficult to say goodbye.  And I’m not comparing the loss of my pets to the loss of my child– it’s not even close.  But the experience at the vet took me back to the day we lost Zoey.  Holding what you love as they take their last breath.  Heart-breaking.  And where I needed to be.

We knew our time with Zoey was limited so I just held her that day. I wanted the sound of my heart beating to comfort her.  It was one of the first things she heard. It felt right that it should also be the last.

I held Holly the same way as she left us.

They told us we could stay with her as long as we wanted.  But I had to give her to the vet almost right away.  Because I couldn’t do it again. I was holding my cat, but remembering holding my daughter after she died.  I’m tortured by the memories of holding her body.  Cold. Stiff.  Gone.  I’m tortured by the memory of handing her body over.

I try so hard not to focus on those parts. On the last day. I choose to remember the sparkle in those bright blue eyes.  And the little coos.  And her fists punching the air.  But you can’t stop grief. And you can’t stop memories.  And losing Holly forced me back there.

And then the house.  When we moved here we were supposed to fill it.  But instead we lost another.  Another bedroom (yes, Holly had her own bedroom) will sit empty.  All of this space for just the two of us (and our two remaining cats).  This isn’t how things were supposed to be.

I spent the weekend feeling like the universe is against us.  I’ve really struggled lately with our infertility issues.  I feel like we’re getting close to the end of the road.  I know there are still things left to try, but I’m growing tired.  I’m spent.  Physically. Mentally. Emotionally.  Wondering if it just isn’t meant to be.  I’ve often wished for a giant sign.  One that either says “Hang in there, more is yet to come”  or “Stop.  Go rest your weary soul by the sea”.  But that isn’t how life works.  We plug along.  Take it day by day.  Try to make the best decisions.  And grapple with so many unknowns.

I know I will get through. I know we will eventually find our way to whatever life is meant to look like for us.  Some days are just harder than others.

 

Disney’s Glass Slipper

I made it through 19.3 official miles at Disney (and about 100 more unofficial miles wandering the parks)!

One of my dearest friends set off on the adventure with me.  Anna and I have known each other since we were kids.  I won’t go into details about all of our past trips together–including a spring break trip to New Orleans in college–because we’re so much more mature now…).  It was so amazing to have her there on this journey with me.  Having one of those friends who has just always been a part of the big and little moments of your life is really incredible.  The kind where you just slip back into the more carefree days.  And the kind who will deal with you at 3am when you’re sick, cranky and a little pathetic.  And do it cheerfully.

My training for the Glass Slipper Challenge really went off the rails in January.  Bronchitis.  Then another condition that sent me to the ER (I don’t even know how to spell it—but I’m fine.  It just made training properly a challenge).  And then when we arrived at Disney, I came down with another cold.  Anna and I spent a few days exploring the parks, eating and picking up our race gear.  We woke up really early on Saturday.  Dressed in our best Lilo and Stich tutus and headed to the race.  I definitely was not feeling the best.  But she stuck with me.  I tried running a bit, but it just wasn’t my day.  I didn’t want to ruin Anna’s race—but as she kept saying in true Disney spirit—Ohana.  Ohana means family.  And family means nobody gets left behind or forgotten.  The 6.2 miles passed amazingly quickly considering I felt terrible.  Having someone with a ridiculous amount of energy and spirit beside you helps pass the time!  Anna completed her first 10k! I’m so proud of her.  Ask our high school gym teacher about our time in gym class together.  I’m sure she’s as shocked as we are that we ran through Disney! And I made it through Race 1.

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I was not feeling good about the half.  But we took the rest of the day and just hung out by the pool.  Floated in the lazy river.  And recovered.  It was definitely what I needed.   Sunday came (early again!) and I set off for the half.  After a slight detour because of a lost bus, I made it to the start line and felt decent. I didn’t want to push it, though, so decided to mainly walk and reevaluate a few miles into the race.  I wanted to finish.  And I wanted to stay below 16 minute miles doing it.  There’s something about turning onto Main Street in the Magic Kingdom with the streets lined with cheering spectators that gives you a boost of energy.  The course heads you toward the castle, veers toward Tomorrowland and then loops through the castle.  You run through the tunnel and out to the front.  I’m not sure I’ll ever get tired of that section of the race.  I felt reenergized and was able to pick up my pace a little bit.  Anna met me at the Polynesian around mile 7.  Seeing a friendly face gave me another boost.  Miles 8-10 are pretty boring.  You’re back on a highway.  The sun has risen and is starting to beat down and you just want to be done.  Finally you realize you’re close to Epcot, a little jaunt through the park and I crossed the finish line.   19.3 total miles in two days for my little princess.  I once again carried with me the names of some of the children we’ve lost.  Because this is for them.

I remember tearing up at the end of the race last year.  Proud of my accomplishment and hoping Zoey would be proud of me too.  But this year, I had many more moments where I felt like crying.  I would think of all the moms—the ones in my club.  The mommas of the names I carried with me.  And there are too many.  But they are amazing moms.  And I wish I didn’t know them like this.  But I’m so thankful for their friendship, love and support.

Hattie, Evey, Mackenzie, Caleb, David, Hope, Robert, Charlie, Allison, Baby Light, Ellis, Stan, Kaitlin, Colby, Teddy, Ezra, Baby Heinle, Caleb, Janet, Nicol, Marco, Jonah, Stevie, Dawson, Charlotte, Jackson, Kyrie, Todd Jr, Thomas, Natalie, Bell, Kuyper. Thank you for being with me. I felt you all.

I was acutely aware this year that things “should” be different.  My daughter should be almost two.  I should have been talking Joe into taking her to meet Mickey. Not running a race in her memory.  It is not right.  It is not fair.  And I wish things were so much different.  But they are not.  And like all the other moms, I’m doing the best I can.  Making the best of the life I have.  Living this life and fighting through the pain.  Continuing to love my daughter and do everything I can to make her proud.

Thank you again to all of you who supported Zoey’s Crew and who donated to Children’s Miracle Network.  It’s amazing to be part of their team.  I appreciate the opportunity to give back to the hospitals that helped Zoey on her journey. Thank you!!!

Oh, and the jewel in my half marathon medal fell out somewhere along the way back to the hotel.  Seems a little fitting—this race didn’t go quite as I expected or wished.  But there’s still a little magic left.

Love Letter

Dear Zoey,

Happy Valentine’s Day my sweet, beautiful girl!

Before you were born a friend sent me a note.  In it he said that as soon as you arrived, love would be completely redefined.  He was correct.  But it started long before you were born.  Love changed the moment we knew I was carrying you.  My love for you gives me hope.  It gives me grace.  It fills my life in ways I cannot fully explain.

Many great love stories have been told.  But I would argue that the greatest love story is the one between a mom and the child she knows is leaving her.  You will not see a fiercer loyalty.  A stronger bond.  A stronger fight.  A more intense prayer.  I experienced it with you. I’ve seen it with my friends who have also lost their children.  But our story hasn’t ended just because you died.  I’m still your mom.  I feel you with me.

I am proud to be your mother.  I am grateful for the time we had together. I will continue to honor your life.  You are the greatest love of my life (I’m sure your dad will understand).  You did redefine love.  You redefined hope. And prayer.  And joy.  And heartbreak.  But the amount of love I hold for you is worth every piece of my broken heart. I would shatter it in a million more pieces for a moment with you. One more breath. One more heartbeat.

I love it when people say your name.  When they mention a memory of you.  You see, it isn’t your life that brings me pain.  No, your life brings me great joy.  You filled me with wonder. I was always in awe of you.  Your tiny nose, little fingers, that full head of hair.  Your soft little bunny feet.  The way you would coo and how you tried to smile.  Looking in your eyes made me feel whole.  So no, I do not grieve your life.

I hope my love continues to find you.  You will always fill my life with love.  My love for you did not end.  And will not end.

I love you my baby bird,

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On the way into work, the radio was airing a story on touch.  One of the senses people often forget about and may not realize is so important.  And I began to cry.  The memory of my daughter’s soft little bunny feet.  I could have rubbed my fingers against the bottom of her feet for hours.  Sometimes I did. It seems that everyone who met her and touched those little feet said the same thing.  So soft.

I felt that familiar ache.  The one where I swear my heart is actually in pieces.  The one where just for a heartbeat I can feel her again.

Her weight against my chest.

Her breath on my skin.

The tickle of her hair.

Her tiny fingers wrapped around mine.

This Christmas

I saw something passed around on social media about Christmas. It was addressed to those who recently lost a loved one.

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It ends with: “Next year won’t be as hard. Trust me”.

Bullshit.

In fact, this year may have hurt even more.  The year after you walk through in a fog of shock.  The year you’re supposed to be “fine”.

But I saw all the other little girls in their pretty dresses.  And all the bright eyed little ones waking up early.  All the photos with Santa.

Ours was so quiet.  Just Joe and me exchanging gifts on Christmas morning after sleeping in.  No early wake up.  No squeals of excitement.  No dresses. No bows.  And before her that was fine.  Joe and I spent many Christmases that way.

But now?

Now all we could think was “it should be so different”.

After Christmas dinner at my grandma’s house, I took pink roses to the cemetery where her stone just got placed.

This year is just as hard. Trust me.

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By the sea

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Joe and I just returned from the Dominican Republic.  While I always find my time near the water comforting and healing, there were just some things on this trip…

Joe got sick while we were there. I had a little melt down that day.  I was just tired, frustrated, disappointed and annoyed (not at him).  Another day, I was sitting on the beach reading The Girl on the Train.  If you’ve lost a little one, avoid this book.  Too many triggers.  I think I’ll start a bereaved mother’s book club with a list of books not to read.  While I’m reading a particularly disturbing section of the book, I hear a woman at the bar.  Clearly intoxicated.  And loudly professing how much she misses her child.  And then what a (insert not family friendly name that you might also call your cat) her husband is because he lets their little one sleep in their bed occasionally.  And I lost it. Poor Joe.  Had to chase me as I fled crying to the restroom.  And that’s the thing about grief.  You don’t really know when you’re going to get overwhelmed.  Or what—or who—will cause it to rear its ugly side (because like I’ve said—it’s always there.  Just sometimes it’s under control).

The trip happened to include two anniversaries.  We released Zoey’s ashes into the ocean one year ago on December 8th.  And I lost my dad 18 years ago on December 13th.  Neither seems possible.  There was a night we sat down on the beach looking up at the stars. I could almost feel her there against my chest. Her breath against my skin.  Almost.  But all too soon reality crashes in and reminds you just how empty your arms are.  Looking up at the sky and taking in the stars and talking about the universe, you question everything.  I’m sure many have wondered if I’m crazy for believing I’ll see my little girl again.  For picturing her with my dad eating ice cream cones and playing tricks on us.  But it’s the only choice I have. I have to believe that I will be reunited with them or this world without them is too much, too long, too hard to withstand.  I have to believe they are together and I will be with them someday.  It’s the only way to survive day after day.  The pain has not lessened.  Knowing I’ve held her for the last time is not any easier to bear more than a year later.  But imagining her in a beautiful place surrounded by the others I love brings me comfort.

And once again it was hard to leave the water.  The place where, despite the little annoyances this particular trip brought, makes me feel at peace.  And I always wonder if it’s the last time I’ll see the beach.  Because we know all too well that life can change in a heartbeat.  I hope we make it back there again.  To sit and let the ocean breeze wash over us.  To hear the waves crash.  To look out over the water and hope she’s somewhere even more beautiful.

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Why

Last night was the first time I cried over our struggles with infertility.  I’ve felt frustrated, angry, irritated and annoyed about it before.  But yesterday was one of those soul crushing, heart breaking, “I can’t do this anymore” days.  When we tried to get pregnant the first time, it took about 3 years.  This time we’re only at 10 months.  But it’s different.  We’re older. We know more.  Time is short.  The hope I hold so fiercely to seems to fade.

We’d been with family earlier in the evening.  All the kids were running around and it hurt terribly not seeing Zoey with them.  I could picture her.  Tiny feet chasing around the bigger kids.  Crawling up the stairs.  Our cousin has a little girl with Down syndrome. Another trisomy.  And she is darling.  Cute little blond curls.  Sweet little eyes.  And on the way home I couldn’t understand why Zoey had Trisomy 18.  The one considered “incompatible with life”.  Why?  Why that one instead of a different one?  Ridiculous, right?  And I know our cousins love their little girl, but don’t always have an easy road either. But she’s here.  And she’s playing and she’s amazing.  And I have a feeling they understand more than most.

And then I got home and confirmed that another month has gone by without getting pregnant.  And it just crushed me this time around.  Why isn’t it easy for us?  Why don’t we get joy?  Why is our life filled with fertility medications and sticks and apps and blood draws?  And why do I have to wonder if we’re just not meant to have living children?

It makes you question everything. The universe.  God.  Because it doesn’t make any sense.  None of it.  Why we suffer.  Why kids die.  Why?  I know it’s the question that has no answer.  I know it’s the question that would chew us up and spit us out.  I try so hard not to focus on it. I try so hard to stay positive.   To be thankful for what I have (and I am.  Believe me I am).  But sometimes it is completely exhausting and all I can do is crawl to my husband and cry.  And for right now, I just need to sit with that.  I need to linger in the dark for a bit and not try to talk myself out of it.  Because this is hard.  I miss my daughter.  And I wish things were different.  And I wish it was just easy for a minute.

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I attended a mother’s grief retreat over the weekend. The group of 36 or so women included many ages, backgrounds.  Some are fresh to the loss, some have been traveling many years.  Zoey was the youngest, but children of every age were represented.

Many of these women had never taken time to grieve.  They had other children or grandchildren to care for, jobs, houses and apartments to deal with.  I feel I’ve spent the last year of my life actively searching out healing. I did not have other children to care for. I don’t have a high stress job.  I had nothing else to focus on except myself and honoring my child.  I am by no means saying I was doing “better” than any of these women.  I could just feel the relief from those women—finally taking a moment for themselves.  So many of them had to continue to fight for their children even after death—fighting with hospitals, searching for justice, defending themselves from judgment.  Struggling with guilt.  It made me realize just how truly blessed I have been.  I was amazed at how many people felt they had no one. That the people in their lives that were supposed to just be there were absent.  That their pain was compounded by the people who should be showing them the most love.  It is shocking and heartbreaking.

While we all came from different places, lost our children at different ages and in different ways, we are all connected by an all too familiar pain.  At the opening, one woman broke down, sobbing.  And you could feel her pain.  We all felt it—really felt it.  We all know that soul-crushing weight bearing down on your chest—on your life.  We’ve all found ourselves on the bathroom floor sobbing that way.  Or shoving it down so we could look strong.  I’ve always scoffed when people have told me I am courageous.  But the truth is, it does take courage to admit you are in pain.  We try to be strong, to show the world we’re tough enough to take this.  And showing your vulnerability in front of others is not easy. That’s not what we’re taught to do.  I’m so proud of these women.  They are all beautiful, courageous, strong mommas.

We were in a safe place to talk about our children.  We were in safe place to tell stories of their lives.  And their deaths.  Of how we are coping. Or not coping.  Of the guilt, the fear. The tears when nobody is watching.  No judgment.  Only love.  It was also a safe place to celebrate our children.  To say their names.  And to hear their names.  To share our pride in them.  To be reassured that we will always be their moms.

It was tough hearing story after story.  To look at another woman and see your pain reflected back at you.   But I have to focus on the healing aspect of us being joined.  And knowing our children are joined now too. This weekend was the first time many of these women spoke about their pain.  If they got nothing else from the weekend, I hope they at least feel they are no longer alone.  We’re there to pick each other up from the mess.  Or to just sit in it with each other for a minute.

Bless you sweet mommas.  Thank you for sharing your stories with me.  And for sharing your children with me.