What others see

A note from an old friend...

"...your bravery and positivity is truly an inspiration.  You should feel so proud!"

Reading that made me cry but perhaps not for the reasons it should.  I feel ugly inside.  Ugly and mad and afraid. 

Bravery?  The first few months after losing Frank, I was afraid of everything.  I hated driving.  So many things could go wrong.  I hated even more the thought of my husband Matt driving.  What if he died?  How would I survive without him?  And even now, almost 10 months after Frank was born, I practically choke on the fear every time I think of another pregnancy. 

Positivity?  When I post about Frank on Facebook, yes, I have a positive spin.  Frank is a wonderful part of my life and I want others to feel comfortable asking me about him.  But I don't feel terribly positive about myself.

Proud?  Of Frank, yes.  I am so proud of that little boy.  Of Matt, yes.  He has been a rock.  Of myself, no.  I can't feel proud of myself while this anger festers inside of me.  That ugliness I don't want anyone to see.

But that ugliness is part of the journey and I would be lying to myself and everyone else if I didn't acknowledge it.  I have to acknowledge it.  I scoured the internet searching for blogs, articles, anything related to stillbirth and it's aftermath.  I searched for celebrity losses hoping that someone spoke out.  I didn't want to be alone.

And so I acknowledge today what is deep inside, what I don't want others to see, because someone else is feeling it too and is wishing for somebody--anybody--to tell them they are not alone.  The ugliness you feel inside does not negate the beautiful life you carried.  You would not feel so strongly if you had not loved so deeply.

Mom!

There were some long months after Frank came silently into the world when all I hoped for were good moments.  Moments when I was neither crying nor numb.  Moments where I could muster a smile and maybe even laugh. 

Now I'm back at work becoming as much of my old self as I will ever become.  (I don't really want to be my old self; I want to be better...for Frank.)  Now most days are "good enough" if not downright good.  I smile and laugh and keep moving through the days.

But there are still moments that grief envelops me when I least expect it.  Today I heard a boy yelling across our school playground "Mom!"..."Mom!"  He wanted her to see him race another boy.  The feeling just took my breath away.  Never will I hear my Frank holler for me.  Never will I see him run. 

Tonight was a night for sobbing. 

Frank--I miss you, monkey, and I miss the moments that should have been.  love, Mommy

Body by Frank

My body betrayed me.  It failed my sweet boy.  As a mom, I am supposed to protect my child and I can't help blaming myself.  It's normal, I know, but that doesn't make it any less painful.  I remind myself that if I had had any control over it, Frank would be here now.  I would have died in his place if that had been an option.  I tell myself this but the guilt remains.

I've struggled with body image my whole life.  Most women can say the same, unfortunately.  But losing Frank made me absolutely hate my body.  Why didn't it do what it was supposed to do?  Then I think about the day Frank was born.  Going through labor and pushing my son out is and always will be my favorite memory with Frank.  That my body got right.

As my body returned to its pre-pregnancy state, I felt like I was losing pieces of him; like physical evidence of Frank's existence kept disappearing.   My breasts that were engorged with milk meant to nourish Frank had felt like another painful reminder that he was gone.  But when the milk dried up, I cried.  Most women would be thrilled to fit into their regular jeans within a few weeks of giving birth.  I cried.  Even the silliest thing, the mark on my hand where they put my IV...when it disappeared, I cried.

Now months after Frank was stillborn I'm still figuring out what size bra to wear.  After lamenting the changes in my chest--the stretched out skin and loss of mass--I finally realize that this is it: physical evidence of Frank that will last my lifetime.  My amazing little boy is helping me once again.  He is helping me learn to love the "flaws" in my appearance.

Vacation

We leave for vacation today.  Without Frank.  All I can think about is the day my in-laws first talked about this vacation with us.  It was a day or two after finding out that we would likely lose Frank.  I was still in the hospital with the doctors working hard to get my blood pressure under control.  Matt's mom and dad mentioned vacation and all I could do was cry.

What is the point, I thought, if Frank won't be there?  What does it matter, these plans, when everything is ruined?  I know they were trying to give us something to look forward to but we were far too devastated to think of vacation.

And now it's here and I don't know what to feel.  I stopped by Frank's grave earlier to let him know where we're going.  I wish I didn't have to do that.  Instead we should be trying to figure out how to fit all the baby stuff into our car.  We should be worrying about his first "big" trip.  We should be exhausted and flustered and happy.  We should be together.  Period.  I know we'll have moments of joy on this vacation but, damn, I wish things were different.  I miss Frank.

To Daddy with love

As I watch my husband sleep, seeing him hug the pillow we had made with Frank's initial, my throat tightens and I ache for him.  He went back to work the Monday after we buried our little boy.  I didn't.  I still haven't.  And, though I'm returning for a couple days next week, as a school secretary, I have the summer off.  I have even more time to grieve and cry and go to therapy appointments in the middle of the day.  When does my husband have time to grieve?  He says he's fine but when I see him clutch that pillow, I wonder.

Today is Father's Day.  My husband's first Father's Day.  Frank should be here now.  I imagined my husband on Father's day, a proud papa carrying his little buddy around for others to admire.  I'm trying to make this weekend as great as possible for my husband but Frank isn't here and I can't do anything about the emptiness. 

To my wonderful daddy,

I'm sorry I can't be with you today.  I know how much you love and miss me.  I hope you can feel some joy this Father's Day knowing that I will always be your son and you will always be my daddy.

love,

Frank

Frank's first bath

When we found out his heart had stopped, the one thing I wanted to do for Frank was give him a bath.  I don't know why it was important to me, but it was.  Because he was so early, his skin was extra delicate.  We could only give him a sponge bath and it was actually done by our nurse using little cotton balls and baby shampoo.  I held him on my belly as she bathed his tiny body. 


Frank's grave marker is in now.  I've cleaned it a few times with a damp cloth and each time I think of bathing my baby.  It's a sad but beautiful thought.  I wish things were different; I wish I was learning to parent an infant.  Instead I'm mothering and loving my baby in whatever way I can. 

Frank Bear

The day we delivered our son, Frank, was the hardest day of our lives.  We knew that his heart had stopped before going in to the hospital and were as prepared as possible.  He was beautiful.  At 26 weeks 2 days, we held our little boy's body and told him goodbye.  We were fortunate to have a professional photographer (through Now I Lay Me Down to Sleep) there to capture the moments we shared with Frank that day.  

A couple weeks after we said hello and goodbye to our son, my husband returned home from work and said "I can never wear this shirt again."  It was the shirt he wore in our photos with Frank.  I understood.  The shirt I wore in the photos was my favorite pregnancy shirt and I couldn't imagine wearing it during a future pregnancy either.  That was Frank's shirt. 

We didn't want to get rid of the shirts but knew we wouldn't be able to wear them again either.  We had a local seamstress make a pillow and 4 teddy bear t-shirts from the shirts.  We gave the Frank Bears to various family members keeping one for ourselves.  We told our family to take photos with Frank Bear when they went somewhere fun.  

 

We've only had the Frank Bears for a couple months but he's already traveled to Italy with a friend!  He's also had adventures at the Kansas City Zoo and was part of a drum circle in Appalachia.  He just received invitations to travel to Disney World, France, and Switzerland this year and Guyana next.  We never dreamed he would go so far!  

We found this quote on the Mikayla's Grace website:

"There may have been a limited time to make memories with our children, but there are endless opportunities to make memories in honor of them."

Photos of Frank Bear on adventures bring us joy.  Having ways to honor and share our son's short life helps us.  This blog along with The Adventures of Frank Bear are but 2 ways we have found to honor him.

  

Please support the charities mentioned in this article--their services help families make precious memories with their angel babies:

 www.mikaylasgrace.com 

 www.nowilaymedowntosleep.org

Sleepless

While pregnant with Frank, I had an awesome condition called pregnancy rhinitis.  I've had seasonal allergies my whole life but this was different.  No itchy eyes, but buckets of snot in my nose, in my throat, and in my tummy (not helping the morning sickness any).  I started supplying my own tissues at work because the government-subsidized ones just weren't cutting it.

At night the post-nasal drip was my enemy.  I tried everything pregnancy-approved--neti-pot, saline spray, humidifier, sleeping sitting up, everything--but my throat hurt with each swallow and sleep was elusive.  I told myself it was good practice for when Frank arrived and tried to grab sleep when and where I could.

Then on a Monday night in early February I reached my breaking point.  I was so tired and so frustrated.  I got out of bed feeling flushed with my heart racing.  My husband asked what was wrong and I started crying.  I couldn't sleep and I felt funny and I didn't know what to do.  I told him I was scared to go to sleep.  We both thought I was having a panic attack so I rode it out and tried for sleep again.

I still couldn't fall asleep in bed so I went to the recliner.  That didn't work so I tried bed again, this time with more pillows.  I still couldn't sleep.  I tried the couch, putting in a DVD that I know so well, I doze off to it often.  That didn't work.  I was still scared to fall asleep.  Then that feeling returned--heart racing and feeling hot all over without actually having a fever.

I took out my blood-pressure cuff that my doctor had earlier told me to hide from myself fearing that I would worry unnecessarily each time my BP was slightly elevated.   188/108.  I woke my husband up and told him we needed to go to the hospital, then called the on-call physician who agreed with my decision.

That's when everything started unraveling.  That's why even now when I can't fall asleep, I think of Frank and that night and the weeks that followed. 

One

One.  We only planned on having one.  One child would be perfect, we thought.  So when we found out there was a serious problem with this pregnancy, it felt strange to start thinking about the next.  It felt like we had our one, our Frank, and thinking about another baby was like cheating on him.  But it was the only hope we could feel at the time and we let it in.

Yesterday, three months after delivering our Frank, we received the autopsy results.  Our baby was as perfect as possible, small but "grossly normal."  Such an odd turn of phrase but that's what it says.

What wasn't normal was the placenta.  We knew there had been a blood clot and thought that was all that kept Frank from getting what he needed to continue growing.  We had been told that, barring any other complications, the chance of having another placental blood clot in a future pregnancy went from 1 in 1000 for the general population to 1 in 100.  1% was something I could accept.

As we sat there in the doctor's office I thought we would get the same information as before.  That didn't happen.  The placenta was a mess.  My chronic hypertension, which up until the end had been well controlled, screwed up everything.  The placenta was a quarter of the size it should have been and the vessels were severely damaged.

So what does that mean percentage-wise?  The doctor said he didn't know exactly and would be referring us to a specialist but best-case 30% chance of recurrence.  Not 1%; 30%.  That's a helluva gamble.

I'm scared.  I want a baby.  Right now I want the baby I had--I want Frank--but I know that someday I want to try for a healthy little brother or sister for him.  I want to nurse my baby; not just have painfully swollen breasts and another baby to bury.  And I don't want to become so detached from a pregnancy, a baby, for fear of that 30%.

I want to be a good mommy and that might mean being Frank's mom and no other baby's mom.

The boy who made me a mom

I'm not going to lie.  Mother's Day was rough.  Frank should still be in me for another week or two but here we are, approaching 3 months since he was stillborn.  My husband and I kept things simple and avoided large gatherings, especially those of the public variety.  We took flowers to my mother-in-law and some to Frank's grave.

Usually when I visit his grave, I kiss my hand and press it to the ground where I think his head lays.  I do this multiple times and I tell my baby how much I love him.  On Mother's Day I knelt and kissed the ground directly.  The grass was cool, tickling my lips and reminding me of the day I got to kiss Frank, the day I became a mother.  I cried but I also smiled because Frank made me a mom and that is the best gift he could give me.

The photos here are from the moments after his birth.  We expected to only feel pain and sorrow that day because we already knew Frank's heart had stopped.  We certainly felt plenty of that but we were surprised to feel immense joy as well.  We were so happy to meet our baby boy.  We loved on him like any new parents would, studying his features and marveling at this beautiful baby that came from us.

Although it was hard to hear "Happy Mother's Day" this year, it would have been harder to not hear it.  To go without acknowledging the little boy who made me a mom would have been to deny the joy his short appearance in our lives brought to us.

The past couple of days have been rough.  My neighbors had their baby boy on Tuesday and brought him home yesterday.  They're lovely people and I'm glad they have a healthy boy but my happiness for them and my sadness for my own boy are all mixed in together.  I go between bawling and feeling numb.

I miss my Frank so much and I long to hold him again.  I want to kiss his rosy little lips and study his features.  I want to count his tiny toes and fingers and marvel at how beautiful he is.  I want to watch my husband smile down at our baby, chest swelling with pride.  I want our family to be whole and healthy.

Running with Frank

Dear Frank,

I started running for you, monkey, even before you existed.  I joined No Boundaries last spring because your daddy and I wanted to have a healthy pregnancy when the time came.  And it was a healthy pregnancy well into the 2^nd trimester.  Then something went terribly wrong.  

I held you and kissed you and told you goodbye.  I had to stay here and take care of Daddy and Daddy had to take care of me.  We both love you so much.  We can't imagine going through the pain of losing you without one another's support.  You helped us realize that we want to be here for each other for as long as we can and that means developing better habits.  We run for you, monkey, and because of you.  We are making a choice to change our lives because you have already changed us.  See what an amazing boy you are!  

Sometimes we really don't want to run or walk or play tennis or do anything at all but we say "for Frank" and head out the door.  I wear a necklace with your name and birth date.  When I'm out for a run and want to quit, the necklace jingles.  I imagine the jingling is you cheering me on.  "Go Momma, go Momma."  You keep me running when I don't want to go on.  

Sometimes I cry when I run.  You were supposed to do No Boundaries with me this spring.  I was  going to walk because you should have still been in my belly most of the program.  I didn't want to exercise alone in case I went into labor so you were going to be one of the youngest NoBoers ever.  I carry you in my heart now and forever and I run for you, Frank Stephen Reller.  I run because I can't not run.  That sounds funny because I am not a runner but it's true.  

I don't even like running.  But I love spending time with you and when I run, I think of you and the joy you brought me the 26 weeks and 2 days I carried you in my womb.  When I run, I think of the moments we should have shared.  When it's that last interval, I imagine you as a toddler in a jogging stroller saying "faster, Momma, faster."  When I run over a bridge, I think of you as an ornery 5 year old, spitting over the edge and watching your spit go downstream.  When I run through the woods, I think of you and me and Daddy building a fort.    And when I'm walking and Michael Jackson's Don't stop 'til you get enough comes on the iPod, I imagine embarrassing you as a preteen because I just can't help but half dance/half walk to that song.  

I run because it makes me feel like a better mommy.  Thank you for helping me.  I love you, monkey, and always will.

hugs and kisses,

Mommy

(No Boundaries, a 5k training program for beginners, is put on in many areas by Fleet Feet Sports.)

6/3 update--a link to the video that accompanies this letter:
         http://www.youtube.com/watch?v=9PTehqKvf2I&feature=share

My universe will never be the same.

I can't stop thinking about my baby; the baby who should still be growing inside me.  The most ridiculous songs make me think of him.  The Wanted's Glad You Came is most definitely not meant for babies but when I hear it, my mind immediately goes to Frank.  

My universe will never be the same,

I'm glad you came.

and

Can you spend a little time,time is slipping away, 

Away from us so stay,stay with me...

I wanted so much for Frank to stay with me and I wish for what every momma wishes for: more time.  My world is in pieces right now and things won't ever be the same but I am so glad I got to meet Frank.  He taught me how to be a good mommy.   

When we found out about that Frank was 13 days behind in development and that a blood clot in the placenta was preventing him from getting what he needed, we were devastated.  Numbers, percentages, all sorts of things were thrown at us and nothing seemed to add up or make sense.  After the initial influx of doctors with different information, it seemed they all got on the same page: Frank would probably not survive if taken out right then and chances of survival at any point were slim.  

We decided to leave him where he was, comfortable in my womb, and try to buy as much time as possible knowing that we would probably be saying goodbye within a few weeks.  Knowing that he would likely die inside me.  The thought of taking him from his home inside me to hook him up to machines that would merely delay his death just didn't seem right.  

I see stories about babies even younger than our Frank surviving and I cry and wonder if we did the right thing.  Then I remind myself that there are a million things that could have been different about their baby's condition.  When you're protecting your child, you just know.  It's after your baby is gone that you start doubting yourself.

Walking with Frank

There's a new trail by our place that connects to one of the bike paths in town.  The trail winds through the woods and opens on a prairie.  It kind of reminds me of my grandparents' old place in Kentucky...especially when a breeze kicks up and the grass smells sweet. 

Halfway to the bike path there's a little bridge over a creek.  Yesterday I stopped there and spit over the side watching it drift away.  I thought about Frank and I taking a walk there and thought that's just what we would have done.  I told my husband about it and he said Frank would have been surprised to see Mommy spit because she's a girl.  Frank would have known that girls can do anything...even be disgusting.