Our healing journey

Shiloh Bear

2011-06-12T20:44:00.000-07:00

A big thank you to the wonderful angel mamas at Molly Bears. I finally got my Shiloh Bear last month after having waited for over a year. She weighs exactly what Shiloh weighed when she was born- 6lbs, 5 oz. Feeling her weight in my arms again brought me to tears. No surprise there. When I had Shalom, I thought I was going to be so distracted that I wouldn't have time to cry and to think about all the things that I was missing out on with Shiloh. How wrong I was. I find myself crying quite a bit lately (it's gotten easier to push the pain away, so I haven't allowed myself to cry as much over the last 2 years) and of course, I still think about her constantly. There isn't a day that goes by where she isn't in some small way, incorporated into my thoughts or 'functions'. Is it possible to miss her even more? I hadn't thought so until now...

I love this photo of Shalom sleeping with her hand on Shiloh Bear. I just wish it were the real thing.

International Babylost Mother's Day

2011-05-01T20:47:00.000-07:00

Everyone knows that May 8, 2011 is Mother's Day. But did you know that May 1, 2011 is International Babylost Mother's Day? This day is to recognize women all over the world that have lost children as mothers. This is a day for remembrance."United in grief, we find love and strength." Please repost to show support. ♥For Shiloh Jayden, my exquisite angel, born sleeping on 10.28.08♥

Little Pink Surfboard

2011-02-26T19:06:00.000-08:00

Sunlight dances like ballerinas

Off the facets of the sea

The breeze blows salt crystals

Which play through your long hair

Leave your footprints behind

On this smooth, white sand beach

The sea calls for you

Slice through those endless waves

On your little pink surfboard

*I wrote this poem, and had this little pink surfboard with Shiloh's name handmade for my husband, Andreas, for Valentine's Day this year. When I was pregnant with Shiloh, Andreas became an avid surfer and constantly talked about how he wanted to buy Shi a little pink surfboard when she was born so that they could go surfing together. He still thinks and talks about it, and probably will for the rest of our lives. As much as I wish I could bring Shi back, I can't give him the real thing, so I gave him the next best thing. When we move into a bigger place, we're going to have a dedicated area for all things Shiloh, and this board will hang over her photos and other memorabilia.

Big sister

2011-02-01T17:06:00.000-08:00

Things have been crazy around the Simon residence lately (for the obvious reasons!) and I feel like I haven't really and truly been able to dedicate time to my angel baby Shi and to thank her (and my dad) for this wonderful gift she's given us.

I know you have watched, and continue to watch, so carefully over your little sister, Shi, and I feel so grateful to have your strong presence in this way, especially if I can't have you here on earth with me. You are so, so missed, as much as, or even more than (if that's possible!) the day we found out your heart no longer beat with mine. Know that you are talked about every single day. Know that you will continue to live on through not only me, daddy and other people's lives you've touched, but also through your little sister and all of your future siblings. Shalom will know exactly who you are, and she will know just how much you mean to us. She will know that her safe arrival was guided by the hands of her big sister and her grandpa. And she will celebrate your brief, but meaningful life, everyday, just as we do.

We love you so much, Shi. Nobody will ever replace you or the immense love we feel for you. You are forever our first child, our exquisite angel.

My loves

2011-01-04T19:39:00.000-08:00

This says it all. I wish her big sis Shi were here to smile along with her. My beautiful daughters...

Likeness

2010-11-15T21:22:00.000-08:00

Shalom is starting to open her eyes more frequently. She is so gorgeous.

But, I can't get over the fact that Shalom is the spitting image of her big sister, Shiloh. The resemblance is uncanny. I love that every time I look at Shally, I also think of Shi.

Baby Shalom

2010-11-10T20:21:00.000-08:00

Andreas and I are delighted to announce the safe arrival of Shiloh's baby sister

Shalom Eve Simon

November 7, 2010 at 6.36 pm

5 pounds, 3 ounces

18.5 inches long

Shalom was born prematurely at 35 weeks, 2 days due to low fluid levels. She currently resides in the Neonatal Intensive Care Unit with minor respiration issues (due to prematurity), but we hope to bring her home by the end of next week.

Shalom (שָׁלוֹם)- a Hebrew word meaning peace, completeness, health, prosperity, and welfare, or safety of an individual. It encapsulates a reality and hope of wholeness for the individual.

Modern Dog Magazine Photo Contest

2010-11-03T11:21:00.000-07:00

Please vote for our care Bear -here-. He deserves some recognition for being our savior/Shiloh Bear!

Shiloh's 2nd Birthday

2010-10-28T19:12:00.000-07:00

Andreas celebrated Shi’s 2nd birthday in a speccy Barcelona park

This day has come so swiftly

Snuck up on me once again
Everyday you’re gone, an eternity

Yet it feels like just yesterday

I wish you were here with me, Shiloh

To blow out these two pink candles

And fill my heart with love, not sadness

To be on earth, instead of just my angel

I love you sweet baby

Happy second birthday

I couldn't resist...

2010-10-25T12:19:00.000-07:00

Look at that smile!

Oh... and she's totally got my Jew nose (check out that bump)! Craziness!

The Bad, the Good and the Inevitable

2010-10-23T11:24:00.000-07:00

THE BAD:
First Betamethasone (steroid) shot at 2pm yesterday (to speed up fetal lung maturity in case of preterm delivery) = slight decrease in fetal movement and fetal heart rate = me scared shitless and annoyed that I was not informed of this earlier = me frantically researching it last night = waking up every two hours to see if she is still alive = humungous headache this morning, but thankfully, a live, active baby.
Second Betamethasone shot at 2pm today = anxiety = another sleepless night

Side note: I think we need to invest in one of those $3000 Tempur-pedic mattresses so my poor, hardworking husband can get some sleep. Ya know, the ones in the commercial where you can jump up and down on the bed with a full glass of wine sitting on the other side?! So, when I'm up at 12, 2, 4, 6 and 8 am shaking my belly, he shouldn't feel a thing, right?

THE GOOD:
From 32 weeks onwards, the baby should have heart rate accelerations to 15 beats above resting heart rate, for 15 seconds, every 20 minutes or so to show that she is "reactive" (this concept is still a bit of a conundrum to me. Isn't she reactive if I poke my belly and she moves? I guess it's more of a reactive heart rate thing though since heart rate doesn't always increase if she moves.). Anyway, she was uncharacteristically sleepy as I was doing my monitoring yesterday (thank you, steroid shot...), so I told Andreas to come talk to her. The minute he started talking, her heart rate shot up from 145 to 170! Isn't it incredible that she not only recognizes her daddy's voice, but that she responds with an increased heart rate! C'est complètement incroyable!

THE INEVITABLE:
I miss Shiloh profoundly. I wish she were here to experience this all with us (not all of the drama, of course. If she were here, there wouldn't be any drama!). Especially because people are constantly asking if I have other children, how old they are and what sex they are. I always say that I have a daughter, that she'd be almost 2. People never pick up on the past tense though. It's just as well. I always end up crying and running away if I have to talk about her not being here.

I'm in awe of the fact that I'll be celebrating her 2nd birthday- alone (sniff, sniff)- in just 5 days. It feels like an eternity without her, but it also feels like she was born just yesterday. Time is so strange. In reference to the bizarreness of time, I found this quote that resonated with me: "The flower that you hold in your hands was born today and already it is as old as you are." -Antonio Porchia, Voces 1943. It hits home.

Xavier's Fridge Friends

2010-10-19T10:04:00.000-07:00

Michelle Swords at Hangin' with Xavier on the Fridge took these cool photos of Shiloh's name in fridge magnets. All part of what I call my artistic grief therapy. What a fantastic idea. I love them!

If you'd like to have your angel's name done, send her an email.

Shiloh's Candles- Infant Loss Remembrance Day Collage

2010-10-17T00:07:00.000-07:00

Here's the collage of all the candles lit in memory of sweet Shiloh (and too many other angel babies) for Pregnancy and Infant Loss Remembrance Day (Oct 15th). The week of Oct 15 is to remember all babies born sleeping, those we have carried but never met, those we have held but could not take home, and those that came home, but didn't stay.

Thank you to everyone who remembered to light a candle and take a photo of it! I absolutely love having these constant reminders that Shi has touched so many peoples' lives.

This year, I received candle photos from all over California (SD, SB, LA, SF, Berkeley, Monterey), Utah, Ohio, Alabama, New York, Hawaii, Australia, The Netherlands and Germany. If you still have a photo that you haven't emailed to me, please feel free to do so- I will add it into the collage!

And, if you'd like to check out last year's collage, please click here.

Shi's baby sister

2010-10-16T01:01:00.000-07:00

Shi's baby sister is definitely a face toucher. Her hand was in front of her face the entire hour we were at My First Peekaboo trying to get some good 4D shots, despite my calisthenics, constant rolling from left to right and the tech's belly tapping! What a cheeky baby. She's so perfect with her chubby cheeks and her button nose. Ooooh, I just wanna eat her up! I hope to meet her real soon- healthy and alive (I have to keep saying it so it comes true- it's all about the chi.).

Also of ironic interest- the ultrasound tech recognized Andreas and me because she had visited Shi's website ages ago and was so touched by it/our story/our bravery etc. She left us a comment and wrote us a letter (but apparently never sent it!). I'm elated that Shi's left a mark on so many peoples' lives. It's so bittersweet though, and never fails to bring tears to my eyes, in addition to a smile on my face.

Oct 15th- Pregnancy and Infant Loss Remembrance Day

2010-10-15T16:30:00.000-07:00

Dearest Friends and Family,

Today, Oct 15th, is Pregnancy and Infant Loss Remembrance Day and we are missing our Shiloh intensely. Please join me and Andreas and light a candle tonight from 7-8 pm, in memory of Shiloh and all of the other angel babies. Our sweet angel Shiloh was only with us for 9 months, but she touches our lives everyday, inspiring us to love more deeply, live more gratefully and cherish every moment.

I would love if everyone could take a photo of the candle they have lit and send it to me for my Infant Loss Remembrance collage.

If you'd like to check out last year's collage please visit: http://www.thenewsimons.com/Site/Whispers_to_our_Angel_Blog/Entries/2009/10/16_Candles_for_Shiloh.html

Love to you all,

Rachel

Broken

2010-10-13T11:05:00.000-07:00

I feel so broken inside

Torn into miniscule pieces

By the lack of your solidity

The barrenness of my arms

Nothing erases the pain of your loss

And day after day

I wish I could go back

back to two years ago

To protect myself from who I am today

Because now, it’s as if I

see with only one eye

breathe with only one lung

feel with only half my heart

I am only half here

I am only half gone

Blobity blob.

2010-10-12T16:54:00.000-07:00

Ach. I just feel like such a blob. Like a large vat of pink, blobby jello. I can barely make it up the stairs. I feel really useless. Screw teaching, screw research, screw cleaning the house. All I wanna do is eat, sleep and mope! Blahhhhhhh.

It's all good.

2010-10-10T17:08:00.000-07:00

I'm feeling really tired again lately. Maybe lethargic sums it up better. I finished up my teaching over the last two weeks and it seems that now, since I have a bit of free time, my past insomnia is hitting me like a ton of bricks. It's OK though, as I have a week to recoup before I start teaching again.

Things have been going well, luckily. I had a bit of a scare the other day because I couldn't comprehend what I was seeing on the monitor (continual acceleration in heart rate up to 195 for about 10 minutes), but I had it explained to me by two very competent doctors, so I'm relieved. Originally, I believed the monitoring was stressing me out more (due to episodes such as the above), but I now realize that it's actually allowing me to sleep more soundly (and less fitfully).

I had my two ultrasounds and NST on Friday. The baby is in the head down position and the cord is only between her legs. She has been having a few, very mild cord compressions, but nothing compared to what it was when the cord was draped around her neck. I'm hoping that she stays head down so she doesn't create any new loops. I'm currently 31 weeks, which means that I get my steroid shots next week (32 weeks).

I'm thrilled. I'm still taking things day by day, but it seems to be going more quickly now. I can't wait to have her healthy and alive in my arms. Let's see if I can make it to 37 weeks.

A break from all the negativity

2010-10-04T11:40:00.000-07:00

I've been feeling pretty good the last few days. I was told that the nuchal cord around this baby girl's neck has been resolved, for the time being at least, so I'm not currently having cord compressions during monitoring (although the cord is still between her legs). I really hope it stays this way. Dr Collins did say though, that the critical time is 32 weeks where she goes into the head down position. We shall see. I'm attempting to stay positive.

I've also been really distracted with teaching over the last week and will continue to be until mid November. I've been going full force: Mondays to Thursdays 12-5.30pm, and on Fridays, I have my standing doctors appointments. I find that this distraction is beneficial to my sanity, and I'm still able to pay attention to the baby's movements during the day. So, yea, things are looking on the up and up. I've been reflecting on the concept of chi/qi lately: "with our energy, emotions, intentions, we can directly influence our environment", and trying to incorporate it into my everyday on-goings. I think it's working for me.

Non-stress testing is so stressful

2010-10-01T15:37:00.000-07:00

I started my non-stress testing today at the peri's office. It's pretty much exactly like the home monitoring I do at night, except she also does an ultrasound to look at amniotic fluid levels. I asked her to look at the cord as well (which is what I care about the most). Long story short, the nurse seems not to know her ass from her elbow. She attempted to evade my questioning with smiles and positivity. I let her off easy. This time. I feel so frustrated. Silly me. I thought I'd get more comfort from these weekly tests. I can't seem to catch a break. Or maybe my expectations of the medical community are just too high. Whatever it is, I'm so tired.

*On a positive note, I've been feeling kinda sexy lately. Sexy at 30 and at 30 weeks. I'm trying to come up with one positive thing a day, however small. Here's mine for last week and for next: sexiness. Check me out. Bow chicka bow wow.

Peri schmeri, who needs em?!

2010-09-26T10:53:00.000-07:00

My Friday appointment with the peri was ridiculous. I feel like every time I get information from one OB, it's completely contradicted by another. It leads me to believe that, instead of being lead by fact, they are simply being lead by opinion. Some OBs are just stuck in their ways, won't venture outside the box, or are too lazy to keep up with current research. Blah. I've had it.

Nevertheless, I feel compelled to share a little about some of the things my peri was saying while at the appointment. And for the record, I will also say that I came into the appointment under the pretense of decreased fetal movement due to cord entanglement (which I said for billing purposes only, although she is entangled in her cord).... well, they kept me waiting in the lobby for over an hour. Now what does that tell you? At any rate, doc wasn't surprised to see me. I think I give him so much grief at every appointment, that he just expects my visits once a week. One of the reasons I am able to give him so much grief is because I'm not one of those acquiescent, naive moms who takes everything he says as kosher. I'm a PhD student in Biology, so I know what research is and how it's conducted. He can't be blowing smoke up my maternity shorts.

The appointment started off as it typically does- I relayed my worry about the cord being wrapped around the baby, said she's having decreased movements, he starts the ultrasound, confirms where the cord is (same place as Dr Collins found it), and then launches into his well rehearsed speech about how everything I'm seeing and feeling (regarding cord stuff) is normal. "The cord can't be floating in front of the baby the entire pregnancy", "The cord placement is totally normal- we see it draped over the baby's neck and between the baby's legs all the time", "The so called cord compressions you speak of are normal in every pregnancy- they aren't cord compressions, rather the reaction of the sympathetic and parasympathetic nervous system to a halt in movement".... I had made the mistake of telling him that I flew to Louisiana to meet with Dr Collins, who has been studying cord accidents for over 20 years, in order to start the home monitoring. He called Dr Collins a "quack", "not a real OB", the list goes on. I couldn't believe the statements that were coming out of his mouth. I even photocopied all of the paperwork Dr Collins gave me regarding cord pathology, but the peri refused to take it from me. I went into his office and left it on his desk, telling him that he needed to look Dr Collins's Pregnancy Institute website up and read all of his peer-reviewed studies. He ended the conversation by saying, "any quack can have a website".

That was enough for one day. I felt like I was leaving the circus. I did march on up to reception though and make weekly appointments for non-stress tests and 2D ultrasounds for the next 5 weeks. I will also be getting my steroid shots and an amnio before 36 weeks. I will have this live, healthy baby in my arms, even if I have to personally mow down the entire OB community to get my way. Ain't nobody gonna hold me down.

If he says no, just come to me.

2010-09-22T13:00:00.000-07:00

I had a great appointment with my OB this morning. Essentially, she said that if my perinatologist won't do something I think I need to have (for example, a non-stress test before 32 weeks), we will go around him. "If he says no, just come to me"--sweetest sound to my ears. She's willing to do it all- NSTs whenever I want, checking me into the hospital for as long as I want, giving me steroids to help mature the baby's lungs, giving me an amnio at 32 weeks to check lung maturity, helping me go into labor... she's so freaking awesome. I also got my husband to call that administrator and get the DL on my account info and *exactly* how to use the home monitor.

Ah. I've momentarily been put as ease. I can breathe. Thank goodness. I was ready to check myself into the loony bin.

Quick update

2010-09-21T23:47:00.000-07:00

I've been battling with this home monitor since Sunday afternoon. Dr Collins said it would take a week or so to get it 'working smoothly', and I had no idea what he meant (how hard could it be?!) until I actually tried to transmit a file. Problems I've encountered thus far: not having a landline to hook the modem up to (who runs things through landlines nowadays?), keeping a consistent heart rate with that huge probe doppler thing (it's pretty clumsy for a hospital grade piece of medical equipment), not being able to track down the administrator that sets up my account (he's so damn elusive!), not being able to transmit the files properly (why is the machine shutting off and turning back on by itself?), not being able to login to my account (is it even set up yet?)... blah, blah, blah.

Nonetheless, there are two pieces of good/decent news: 1) I must have done something right with the transmission (after having multiple tantrums and frustration cries) because Dr Collins was able to successfully view my first strip (although he didn't get the text message alert notifying him that I have uploaded a strip- administrator, where are you?) and, 2) the baby's heart rate sounded good. She continues to have some cord compression (so it's somewhere on her body), but Dr Collins does not consider them 'decelerations' per say. I guess I have to relish the good news, even if they are just minor things. Man, I think I need a glass of wine....

N.B. This is not my strip (cos I can't access mine right now!). This strip shows a major deceleration and would require delivery.

It's official. Thank G-d for Dr Collins.

2010-09-19T20:28:00.001-07:00

Well, it's official. Officially sad and tragic actually. Cord issues DO recur in subsequent pregnancies. I'm living proof (amongst the other 1200 women who've been studied!). For those of you who aren't aware, my beautiful and flawless daughter, Shiloh, was born sleeping at 39 weeks, 5 days gestation due to an umbilical cord accident in Oct 2008. The cord was wrapped so tightly once around her neck (nuchal cord) and once around her body (body loop) that my OB couldn't even slide her fingers underneath it to free Shiloh after she was born. Her arms and neck were indented from the pressure of the very organ that was meant to sustain her life in utero. How ironic. *As I write this, tears are streaming down my face. Did this really happen to my daughter?* I miss her terribly.

Now, I'm pregnant with number 2. A little sister for Shiloh. I only wish she were here to experience it. I've been conflicted the entire 28 weeks. I'm scared out of my mind (which I previously thought was unsubstantiated, but due to prior experience). I wake up 5 times a night to make sure she hasn't passed away during my sleep. I freak out and think the worst if she is moving too much or too 'hard'. I contemplate running to the hospital every time she has the hiccups (yes- hiccups are ONLY related to cord compression. If your baby has hiccups, the cord IS being compressed one way or another, at least at certain times). Sometimes, when I'm really deluded, I even think this baby is Shiloh, that I've been given another chance with her (I haven't told ANYONE this before, and I feel awful just saying it). Yes. I'm a full-blown nut job and it's starting to wear thin on my being.

But the point of this post is actually to write about my appointment with Dr Collins. I just returned from my trip to Louisiana (a few hours ago!) to meet with Dr Collins regarding the home monitoring for this baby. He is such a passionate, caring man and one that truly wants to rid the world of unnecessary infant death. So, he gave me an ultrasound and hooked me up to the monitor for 30 minutes to check the baby's heart rate and to see if I am having contractions. I'll just get to the point- he confirmed my worst fears. There is cord compression (the baby has been having hiccups 2-3 times per day for 5-10 minutes each for the last 2 weeks) and she’s even having minor decelerations. The cord is possibly being compressed in one or all of three different places. Right now, it is between her legs, around her back and draped over her neck. It's not 360 degrees around any body part, but it's enough to cause her to lay on it or squeeze it at certain times. Now, the decelerations are only 10-30% and she only had 10 in 30 minutes, so he says the baby is ok for the moment, but if it gets worse- 50% and 30 in 30 minutes- I need to deliver. He wants me to get weekly, high-resolution ultrasounds to see what the cord is doing. So my fears are substantiated and now I'm beyond terrified. I want to get this baby out now. A.L.I.V.E.

My OB is totally on board with whatever I want to do, but my perinatologist (who has the high resolution U/S) is not. I had to jump through hoops at 25 weeks to get him to do another U/S to check where the cord was. I begged him to start the non-stress testing at 32 weeks, instead of 34 (which was a compromise- I wanted to start at 30). He believes that the published work on stillbirth is not peer reviewed and has a biased population. He doesn't believe that cord accidents recur and doesn't make an effort to read the available literature (of which there is plenty, which has been peer reviewed by over 30 medical academics, thank you Dr Collins). I'm über-worried because I know he's going to resist when I tell him I need weekly ultrasounds. I feel a tiny bit confident that I will have the home monitor to fall back on for more accurate self-interpretation, but I'm still scared out of my mind. I need the support of these OBs and the hospital, not for them to put up a force field, and I hate that I have to singularly be so damn proactive. Doesn’t everyone want a baby to be born alive if its demise can easily be prevented? I’ll never understand how ignorance can be blissful for the medical community.

To be continued….

LoveLE Maternity Photos

2010-09-05T11:38:00.000-07:00

My 'LoveLE' friend, Autumn, an aspiring maternity photographer, took some maternity photos of me last week (25 weeks). Here are a few for your viewing pleasure.

Detached

2010-08-01T17:17:00.000-07:00

I feel so detached

Detached from you

Detached from this new life

Detached from reality

Detached because of fear

Fear is so incapacitating

Its icy fingers grip my heart

My mind

An uncompromising grip

I wish I felt differently

I wish this fear didn’t taint my thoughts

Hinder my grieving for you

My bonding with your sister

I’m so sorry, babies

But, I love you through this fear

I just hope that you feel it

You are my heart.

2010-06-29T21:19:00.000-07:00

After having woken up with vivid dreams of Shiloh on the brain, feeling very emotional and missing my Shi so strongly, I walked out of my front door last weekend to find this watermark on my porch:

Thank you for letting me know that you are always near, Shi. I love you to bits.

Afraid

2010-06-14T21:28:00.000-07:00

I’m so tired of being afraid all the time. I wish I could just go to sleep and wake up seven months from now with a live, healthy baby in my arms, and my 2 year old Shiloh running around the house. But no. Instead, I’m always expecting the worst, in everything. If Andreas isn’t home in time from surfing, I picture him unconscious, face down in the ocean. If he is late from work and doesn’t call, I automatically assume he’s at the hospital because of a car accident. If I sleep on my right side, instead of my left, I worry that something will happen to Shiloh’s sibling if caught up in the cord. I’m even afraid because I am verbalizing my fears. What if they come true because I say it out loud? Am I jinxing myself? G-d forbid anything else happens in my life to drag Andreas and me down. I don’t know that we’d survive it. We are barely surviving as is.

I’m so tired of being afraid all the time. Will this ever change? I’m not able to enjoy one of the most enjoyable times in my life- pregnancy. I feel so robbed. Robbed because I don’t have my daughter, robbed because I don’t have my father, robbed because not only have these vital people been ripped away from me, but my happiness and hope have been ripped away as well. I don’t want to talk about “when the baby is born” (I actually get angry when people bring it up!), I don’t want to know the sex, or buy maternity clothes, or give the child a name, or set up a nursery, or put my name on the waiting list for daycare one day. I can’t do it. I did all of this for Shiloh, and look where it got me…. look where it got her.

I’m so tired of being afraid all the time. And it’s only going to abate once I deliver a healthy, live baby, not abort. Then I’ll be sleeping on the floor of the nursery, listening for breathing, worrying about SIDS instead of SADS (like a friend recently informed me). I’m fearful of even talking about this, so I’m going to stop now.

I will though, be so bold as to say that fear is equally as encompassing as grief. But just like I don’t want to have to grieve anymore, I don't want to be afraid anymore. Unfortunately, neither of those wishes will come true. Like my grief, my fear will be perpetual, my fear will be on the forefront.

The baby that isn't here

2010-04-07T20:51:00.000-07:00

Life carries on, whether I sink or swim. Nobody is waiting for me to catch up, to catch my breath. It seems like nobody talks about the baby anymore. The baby that isn't here. The baby that would have been a year and five months soon. The baby that could fill this gaping, ragged hole in my heart. The baby whose loss created this hole.

I've been having new bouts of grief. I've been missing Shiloh so intensely lately. I cry at the drop of a hat- every ridiculous commercial, every dramatic show, every minute reminder of baby Shiloh, makes me ball. It's almost a relief though. I've actually been sort of angry and disappointed in myself because I haven't been able to dedicate as much time to Shiloh as I have in the past. I'm avoiding the pain because it makes me feel hopeless. To say hopelessness is a terrible feeling does not do it justice, and if you've never felt it before, I mean, really felt it from the deepest darkest pits, then you just cannot comprehend the utter unwillingness to live. But, maybe you can somewhat grasp why I attempt to avoid (emotionally) going back to this past.

I look at my life now (busy, busy, busy- back to work, school and reintegrating myself into society) and contrast it to my life from October '08 to March (refusing to get out of bed, incessantly crying, hating everyone and everything), and I can't believe the complete 180 I've done. I can listen to music and enjoy it. I'm able to shoot the shit again. I can go to parties. Food doesn't just sustain me, but tastes good. I can sit at my office at school and actually be productive. I can (sometimes) hug my husband without thinking about the baby that isn't filling our arms.

I'm actually kind of progressive. I've come a long way. But that doesn't mean that I miss my sweet baby Shiloh any less. It doesn't mean that I don't think about her every minute of the day, even when I sleep. It doesn't mean that I don't want people to bring her up in a casual conversation. It doesn't mean that I am emotionally stable, even though I may look it. It doesn't mean that people should ask me how I am and expect a superficial answer (don't ask me how I'm feeling if you don't want to know!). I guess I just want people to talk about Shiloh more. Just because time moves on for everyone else, doesn't mean it does for me....

My trooper, Bear

2010-03-09T08:51:00.000-08:00

An entire day in a cat cage at the vet.

General anesthesia.

4 teeth gone.

Other teeth cleaned.

Down to the root.

Shaved leg patches for IVs.

A catheter.
A swollen face.

A bruised ego.

A broken heart.

Copious pain.

Indefatigable moaning.

He truly is a Simon.

Overcoming adversity is our motto.

The Secret Garden- January

2010-02-13T17:18:00.000-08:00

For the first meeting of the month we thought we would speak about the holiday season and how you coped. What was it like for you? Did you do anything special in your child's memory?

As we expected, the holidays were harder than any normal day. Dec 12-Jan 2nd is the time when families come together to celebrate each other, and of course, we weren't able to do that. Shiloh is always in our hearts, but she isn't here with us. It wasn't our first holiday season without Shiloh (she was born in Oct 08), but it was the first time that we were able to not only mourn her loss, but to enjoy the time that we spent with her, to relish in her beauty, her perfection, and to feel grateful that we did have her, if only for a short time. It was also the first time that Andreas and I celebrated a holiday all our own- Chrismukkah/Weinukkah. We hung Shiloh's (and dad's!) photos and lots of angels, on our Weinukkah tree and hung up a baby stocking (with Hanukkah gelt) for her. My mom even got baby Shiloh a stuffed animal Hanukkah doggie (he wears a yarmulke and holds a dreidel in his paw!). We are just now really learning how to make Shiloh a part of our lives (albeit, not how we wanted), by occasionally putting aside our grief, and appreciating the gift she gave us- the gift of her brief presence.

Shiloh's Totem

2010-01-28T19:36:00.000-08:00

a ladybug crawls across

my sunglass lens,

out of focus, from the inside

I take them off to get a look at her,

she crawls across my hand

so tiny and so perfect,

no spots on her shiny back

I smile at her and make a wish

she flies away,

up to the sky

up to the day

* This poem is from my wonderful friend Sara. She gave it to me for Shiloh’s birthday in October and I’ve been reading it once a week since. Thank you Sara, for being there for me through these last 15 months. Your friendship has been an unyielding force (in a good way, of course!).

Happy Chrismukkah (English)/Frohe Weinukkah (Deutsch)

2009-12-25T19:51:00.000-08:00

This year Andreas, Bear, angel baby Shiloh and I created a new tradition. We celebrated a combination of Christmas, the German way, and Hanukkah, the NY Jew way (appropriately deemed Chrismukkah, or in German, Weinukkah; from "Weinachten"). Neither of us were/are feeling particularly merry this holiday season, but decided that we should "celebrate" the fact that we have each other for support through these incredibly rough times. So, we unwrapped presents on the eve of the 24th (as per German tradition), in front of our first Weinukkah tree as a family. It was and continues to be very festive. Our two menorahs sat ablaze on the coffee table (even though Hanukkah ended on the 18th!), across from my adorable dreidel lights (thanks ma!). Our chockers puff paint stockings (courtesy of moi- Rachie) dangle from the wall, along with the lebkuchen heart Andreas gave to me on our very first Christmas together in 2001 (yes, I didn't eat it, I kept it- I'm sentimental!). That was my first encounter with a German Christmas dinner- a big fat DUCK from Oma’s sister’s farm!!! Lecker (yummy)! Our little noble fir is decked out with shiny balls, beads, candy canes, heaps of angels, and of course, photos of our loved ones- Shiloh baby, my daddy, and Bear, our lil' stinker! Santa Bears even paid us a visit!!! We are hoping and praying that 2010 is a year of only happiness, health, wealth, success and multiple siblings for Shiloh. 2010 has to be a better year... it just has to.

The Duality of my Heart

2009-12-20T19:10:00.000-08:00

Here's another poem I wrote (Dec 1997) for my english class. I'm actually shocked at how emotionally deep I was back then!

One woman, one heart.

A heart with two chambers.

Two chambers that contradict each other with a simple word.

The left always yearning for completion and

the right always begging for spontaneity.

Both chambers like two novices

contained in one heart.

Competing for recognition and

for popularity.

One strongly pensive in reason and

constant in decision

believing only in practicality.

While the other, filled with impulsive unrestraint and initiative.

Both deriving from the same heart,

but overwhelmed by different passions.

One chamber exclaims,

look deep inside,

to another’s aching heart.

The other shouts,

all that matters is displayed on the outside.

They beat as one,

yet in spirit,

are two different entities.

Together, striving to live in harmony;

to survive.

Knowing that they are unable to function without the other,

They settle.

They make this woman whole.

My Appleness

2009-12-18T11:54:00.000-08:00

This is a poem I wrote in 1998 for my AP English Class and I just came across it the other day as I was cleaning out some old stuff from my mom's garage. It's called a Concrete Poem (it originally took on the shape of an apple) and the stylistic devices used were: imagery, connotation, metaphor and symbolism. It immediately reminded me of Shiloh, so I wanted to share it with everyone.

My darling dearest.

You are the apple of my eye. The fruit within the fruit.

Apple seeds. This cherry red combined with a multitude
of seeds makes this apple whole. You complete me. As we sit
in this brilliant bowl, our cores combine to share a single one. This core is everything
but physical. This is no dull love; no ordinary love. We cannot admit absence;
we are linked, for this love is one of great and complex definition.

In spirit we are inseparable, core-mates, this love we share cannot be weakened or
broken. There are no exceptions, no excuses. The everlasting reality
sometimes creates the ability to frighten.

Forget all of the meaningless details.

JUST BE.

Ode to Bear

2009-12-11T15:20:00.000-08:00

(Photo courtesy of Emily Hoke)

This is an ode to my puppy, Bear, who has been with us since shortly after Shiloh passed away (we got him in mid Nov 2008). I never once have mentioned him publicly, because I didn’t want people to think that I was trying to replace my daughter with a dog (by the way, Shiloh will never be replaced, not by any animal or another child). But I have decided it’s time to dedicate a post to Bear, who’s really been my and Andreas’s savior over the past year.

Bear, you claim to be a dog

But are you really?

There’s so much ‘person’ in your personality

At times you act so queerly

You’re a cheeky little bugger

Always doing something naughty

Chewing socks, chucking rocks

Looking at me haughtily

But all these things I can forgive
For you have been my savior

I yell at you and cry on you

Even when you’re on your best behavior

I know you don’t understand any of this

But mommy and daddy are very sad

We’ve lost our only daughter

As well as Lou, your grandpa and my dad

But you have been my constant outlet

I don’t know what I’d do without you

For loneliness, sadness, hurt and love

And my mothering instincts too

So thank you for being you, Bear

Always the perfect fur baby

I owe you for my life thus far

About this there is no maybe

Light up a Life 2009

2009-12-08T21:29:00.000-08:00

This Sunday, December 6^th, Hospice of Santa Barbara had their annual Light up a Life at the Labero Theater to remember those that we’ve lost. As last year, I hung a star for baby Shiloh and a star for my dad, Lou, who lost his battle with pancreatic cancer in March. The dominant feelings were those of immense sadness and surrealism: I can't believe I'm putting a star on a tree to represent the lives of my daughter and my father. It's just so tragic and so very heartbreaking. This year was even harder because Andreas wasn't here to support me. Or I should say, we weren't together to support each other. I just have this nagging question running through my head day after day.... Why is life so damn cruel?

Cerveza

2009-12-06T09:39:00.000-08:00

Right now, Andreas, my husband, is teaching an MBA course at a university in Barcelona. This is the first time since Shiloh was born that we've spent more than just a few days apart. It's been very hard being separated, but also good for our personal healing and growth. Here's a poem that Andreas wrote yesterday (during dinner!). He says "This is a poem going forward, not just holding onto the pain. A poem to the next baby, by acknowledging Shiloh as part of it. This is what I want for us. This is what we need to heal now. A different attitude. Accepting where the pain comes from now and working on it."

~~~~~~~~~~~~~~~~~~~~~~~~~~

I am sitting here with a Spanish beer and I try to dream a common theme, how would it be if you were here.

The dream is easy at the start, I would love you with all my heart. And I would do it all over again, paint the room and buy the playpen.

Yet, there is a point that is hard to cross. Your birthing process, such a loss. All the sudden it is only pain, will it be a loss again?

I had to learn there is no guarantee. You never know when you get stung by a bee. But the bee also brings pollen to flowers, and maybe you will soon be ours.

I feel I have the strength again, to love you here and Shiloh in heaven. Mommy, daddy, Shiloh and Bear are ready for you. Dream of ours, I know you will come true.

The Thanks in Thanksgiving

2009-11-30T16:52:00.000-08:00

(Photos by Emily Hoke)

During this time last year, I was completely lost. I was alone. I was angry and betrayed. I was ripped in two. I felt like I wanted to die. I was so full of raw sorrow that I couldn’t get out of bed, let alone be with friends, if only to eat good food. What was there to celebrate? Well, I still feel this way, but to a lesser extent. The only things I feel I can be thankful for nowadays are family and good friends that attempt to understand what Andreas and I are going through on a daily basis. Oh, and delectable food, of course. Can't forget the food! I guess this is a huge step. I wonder if the holidays are ever going to be joyous again though. Perhaps as our family continues to grow, so will my joy. I can only hope. And be thankful for the small things...

Complex

2009-11-26T09:59:00.000-08:00

This grief is complex

It’s multifaceted

Because I not only mourn the death of my child

But the death of my old relationships

The death of my old self

Of my innocence

My lightheartedness

My happiness

I would love to see into my future

I desperately want another baby

-Yesterday-

And I’m terrified that it won’t happen

That I can’t get pregnant again

Why is it taking so long?

What am I doing wrong?

I want, I need, assurance

To know that I don’t have to mourn more

The death of my future

On top of mourning the death of my daughter’s

A bright future

Pilfered before possessed

It’s so unjust

But I know

I know I can’t lose hope

If I do

There’s nothing left

Nothing left for me

Nothing left for me to live for

Note: I've fixed the Rss feed on Shiloh's memorial website. Hopefully everyone can easily subscribe to the website blog now to get blog updates. Happy Thanksgiving!

Moving through

2009-11-22T14:38:00.000-08:00

In an attempt to enjoy life again (somewhat), I'm going to start writing other posts (about our lives), in addition to my Shiloh posts. The origins of this blog lie within happier times. We started the blog in 2007, during our 5th year of living in Australia. It was originally called "Simons Go Global" and was created to keep friends and family all over the world up-to-date on our on-goings down under. We've definitely lost touch with these happier times, but I would like to start writing again about our 'new' life (with integrated grief). I think I need this to help me move through the sorrow.

I will still post some Shiloh-dedicated blogs here, but I would like to transfer most of my Shiloh blogs to the "Whispers to my Angel" blog on her memorial website. There is an RSS feed on the website blog so people are still able to subscribe. I hope that you will all follow me over to her website blog, as I love to know that people are remembering my Shiloh, I love to meet new people, to help others through their grief, and mostly, I love to read all of the thoughts and comments. It's such a wonderful tribute to the life of my baby angel Shiloh. So stay tuned. The next blog is likely to be about spending Thanksgiving with some very special people who've been there for us since day one of our healing journey.

Dweller

2009-11-17T20:44:00.000-08:00

I can’t get over things fast

I like to dwell

To brood over my emotions

My thoughts

I’m a dweller by nature

Mostly, I dwell on my sorrow

My pain

My anger

My occasional hatred

The injustice of it all

Sometimes I also dwell on good things

The way you smelled

Your puffy cheeks

Your piano fingers

The non-existent toenail on your little baby toe

Just like mine

I need to feel the pain

To feel the little joys

To dwell

It makes me feel

Well… human

In a sense, it makes me feel

Mortal

Shiloh's First Birthday Celebration- Photos

2009-11-12T11:20:00.000-08:00

Shiloh's birthday cake (Photo courtesy of Kristen Papac)

I've posted the first batch of photos from Shiloh's first birthday celebration, on her memorial website:

http://thenewsimons.com/Site/First_Birthday_Celebration.html

Thanks to all of you amazing people for being there for me and Andreas on Shiloh's special day. Love to you all! Xoxo

Shiloh's First Birthday Celebration

2009-11-09T10:07:00.000-08:00

Here’s a short video of Shiloh’s celebration, made by my lovely friend Sara Koch.

On Saturday, November 7^th, a select group of local people who’ve played an integral part in my and Andreas’s healing since Shiloh was born, came together on Butterfly Beach to celebrate her first birthday (Oct 28^th). It was an incredibly meaningful and emotional day for us. It was absolutely perfect in every way and the balloon launch went off without a hitch. We met at the beach at 3.30 pm, talked, cried, drank coffee, ate white chocolate raspberry birthday cake, wrote little notes to Shiloh and all the other angel babies on CA seed paper (so when the balloons burst the seed paper falls back to the earth to bloom into all the beautiful plants and flowers that often remind us of Shiloh), and sent 30 balloons towards the heavens with our whispers to angel Shiloh inside as we watched the sunset. It was magical. The most amazing part was watching the balloons form and hold an “S” for a whole 5 minutes as they floated higher and higher. I’m almost positive someone has a photo of this (to be posted!). I’ll have to make this number 8 on my list of “Strange Happenings”. It was breathtaking and I couldn’t have asked for a more perfect day to celebrate the brief life of my stunning angel.

Shiloh, you are sorely missed, but you will remain in our hearts and minds for all eternity. I love you so.

The Secret Garden- October

2009-11-06T21:18:00.000-08:00

This meeting we would like to talk about where you are. Where are you in your grief? Has it been years or just weeks since you lost your baby? How are you feeling? How do you hope you will feel in the future? Have you found any peace at all?

It's been 1 year and two weeks since we lost baby angel Shiloh (Oct 28th). I can't believe it's been a year (I say something like this every month...). In fact, we just celebrated Shiloh's first birthday on Saturday. We had a balloon launch. I thought I'd be a lot more emotional than I was, although it was right underneath the surface the entire time. I cried the entire two weeks before her birthday, so I felt like I didn't have the ability to physically cry tears on the day. I don't really know where I am in my grief. I'm still on that roller coaster of emotions, but it's not as unpredictable anymore. I went back today to read all of the posts from the first 6 months after Shiloh was born and a part of me feels so separated now from the raw pain of it all. I think it's a coping mechanism. I don't ever want to go back there. It was like I was endlessly clawing my way out of a deep, dark pit. I had no hope, no direction, and no joy. I was just empty. The whole world was going on around me, but all I wanted to do was curl up and die. The pain and grief is not that raw anymore (thank goodness!). I have definitely learned to live with my daily grief. It's now a part of my being. You don't forget about it, it doesn't become less, you just learn how to cope with it better; you almost become more adept at pushing it away. At least, that is the way I feel. From the very beginning, I've let myself feel every emotion as it was happening. I would try to label my feelings, compartmentalize them, to understand why I was feeling the way I felt. I feel like I've been grieving "well". I still feel lost a lot of the time, and disenchanted with trivial things in life. I miss Shiloh every second of everyday and I still ache for her, but I've matured in my sorrow and I feel a tiny bit more at peace than I did even just last month. I'll have more hope and some happiness again once I bring a screaming baby home in my arms- Shiloh's sibling. Until then, I'll still be uncertain, terrified of the future, and full of sadness knowing what I could have had with Shiloh.

A Year Without Shiloh (Oct 28th)- From Kellie

2009-10-29T20:19:00.000-07:00

Photo courtesy of Kristen Papac

Another one of my incredible friends, Kellie- mama to Remi- wrote this poem for Shiloh's first birthday. What a strong, compassionate woman.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
You are missed dearly

Every moment of each day

You have touched so many lives

In a very positive way

I feel as if I know you

Although we haven’t even met

Your parents describe you beautifully

So no one will forget

You picked the perfect Mom and Dad

To share your pure life with

They cherish you with all they have

You are their ultimate gift

They etched you on their bodies

A permanent reminder

To show how proud of you they are

Their precious heavenly daughter

It’s been a year without your presence

Each day knowing what is missing

I know that you’ll soon come back

Until then…we’ll all keep wishing

You may be a girl or a boy

We don’t know what you will choose

To finally complete your journey

With Rachel and Andreas who love you

Little Angel Shiloh

Will you please take Remi’s hand

To help guide each other home…

Back to us again

Your First Birthday

2009-10-28T11:29:00.000-07:00

Photo courtesy of Kristen Papac

Today is your first birthday

And I’m feeling really numb

I can’t believe it’s been a year

Since the day that you have come

At 1.18 pm, you were brought into this world

A bundle of joy much anticipated

Your future planned way ahead of time

Because a whole 10 months we had waited

We were meant to have loads of good times

Together- talking, laughing, playing

Recording your monthly milestones

Your weight, height and things you were saying

I ache for these things every day

For my arms to be heavy with your weight

To change your diapers, to breastfeed you

And sleep in with you ‘til late

My intense joy and love for you

To everyone- I always declare

All things that encompass you

I feel compelled to share

Not a day goes by without you, Shiloh

Always on the forefront of my mind

I think, talk, write, and cry for you

Our lives are forever intertwined

My heavenly baby angel

For eternity you will be

As I see you in all earthly creatures

Insects, flowers, and even our lemon tree

So happy first birthday to you- love of my life

And just so you don’t get a stomachache

You and all the other angel babies

Need to take it easy on your birthday cake!

-Love your mommy

I can't believe...

2009-10-21T10:27:00.000-07:00

A luminary for Shiloh on Oct 15th (from Sherri)

I wrote this journal entry on the Daily Strength Forum last month. I decided to post it here now because I still feel this way. Sometimes I am in awe of the human capability to survive intense trauma.

~~~~~~~~~~~~~~~~~~~

Wow. I can't believe I've come this far. I can't believe it's been over 10 months since I lost my Shiloh. I couldn't stop crying or even really get out of bed from Oct-Dec. I was SO utterly depressed, confused, empty, hopeless. I had no sense of purpose or direction. I couldn't brush my hair, or go outside, or see people, or make small talk, or listen to music or anything. I cried, I kept to myself, I hated the world, and I wrote about it all. Sometimes I miss those days where I could let myself FEEL EVERYTHING. It's so hard nowadays to allow myself to really revisit that pain. I think about Shiloh every minute of everyday, but it's so hard to open her memory box, so hard to let myself think about that night where I found out that her heart had stopped, the afternoon when I gave birth to her, the look of despair on my husband's and my sibling's faces when I pushed her out and she didn't move or cry, the first time holding her lifeless body. I still think about these things all the time, but I removed myself from it a bit. It physically hurts to cry so much now. I guess it's just a coping mechanism, but it makes me feel so damn guilty.

I was sitting in my Hospice parent bereavement group last Thursday and there was a new couple there. I'm glad they found this support group, but I HATE when new couples join us. Nobody should have to endure the tragedy that people like us have endured. When I saw them, just the expression on their faces, it brought me back to the first time we went to this support group- exactly one week after I gave birth to Shiloh. My husband dragged me to group. I am not the kind of person that likes to talk about my emotions to strangers (face to face at least), I do not like therapy and I don't need people seeing me blustering, crying, distraught- essentially- a mess. But Andreas said that we needed this, that we don't even know what grief really is, or how to heal, that we can't be isolated, that we have to find people that know our pain. In the end, he was totally right. I certainly wouldn't be where I am today had he not dragged me to support group. He gave me yet another, much needed outlet for my anger, disbelief, bitterness, sadness, and loss. It feels so good to be with people who understand, who don't ask you what's wrong when you randomly start to cry, or turn away when you see a baby or pregnant woman. They get it. This, right now, is all I can ask for in a friend. It's sad that I can't be comforted in any other way, but I've come to accept that this is my reality, that I'm living in a shell of myself, sustained by a broken heart.

Strange Happenings

2009-10-19T13:01:00.000-07:00

The book I found at the swap shop

As usual, I was inspired by someone else’s experiences (Allison, this time!) to write about some of the weird, coincidental things that have been occurring since I had Shiloh last year. I’ll start with the most distant experience.

1) During a pertinent part of the ceremony at my father’s funeral in March (where the Rabbi was talking about how much my father loved his family), I was hit in the head by TWO leaves simultaneously (and it wasn’t even windy!). Dad and Shiloh were together and this was his way of telling me.

2) A month or so after Shiloh passed, my friend Kristen said she kept seeing a tricycle with Shiloh’s name on it around our housing complex. She hasn’t seen it in a while, but if she does, this time she’ll snap a photo of it.

3) I’ve been repeatedly followed and accosted by many different types of insects since December. Bees, fruit flies, spiders, butterflies- you name it… They are even around when there is no other insect in sight. It’s crazy!

4) The girl I asked to do my memorial Forget-me-not tattoo with Shiloh's birthday incorporated into the drawing, has the same birthday as Shiloh- 10/28. I was having doubts about letting her do it, but when I found this out, I realized that it was meant to be.

5) I took Bear, our puppy, to the farmer’s market with me last month. He saw a dog that he really wanted to play with, so he was pulling against his leash and whining like I’ve never seen before. I couldn’t figure out what was so special about the other doggie. Finally, I walked him over so he could play with her. Well, I got my answer as to why she was so special- the dog’s name was Shiloh.

6) Allison (Christian’s mommy) has been seeing a white butterfly nearly everyday when she takes her dogs for a walk. A few days ago, Shiloh somehow popped into her head when she woke up that morning. She thought about her and Christian playing together. As she walked outside with her dogs that morning, the white butterfly (Christian) was dancing around her head and then met up with another white butterfly (Shiloh). They danced around each other playfully. This was our babies playing together.

7) I was taking Bear for a walk yesterday morning past the swap shop in our housing complex (the swap shop is an empty apartment where people can leave things they don’t want and take things that they do) and as I was walking by staring at a huge pile of junk and books, a small, thin book on the tippy top of the heap caught my eye. It was a birthday book. The birthday was October 28^th- Shiloh’s birthday. It totally gave me the chills.

I love getting these signs from Shiloh. They are so special. I think it’s her way of telling me that she is ok, that things with us are going to be ok.

A letter to Shiloh from Emily

2009-10-18T18:22:00.000-07:00

The candle Emily and Andrew lit for Shiloh on Oct 15th.

I absolutely love this letter that Em wrote to Shiloh for Pregnancy and Infant Loss Remembrance Day... it's so pure and so sweet.
~~~~~~~~~~~~~~~~~~~~~
Little Miss Shiloh J. Simon,

I am so sorry we never got to officially meet. Still, somehow, I feel we've been acquainted. I saw you make your mama round and happy--you were the beauty in your mother's smile, her light bouncy step. I saw you in the pride and sparkle in your father's eyes. You were created with love and in their love you shine eternally.

The ocean is a place of peace and healing--but also a powerful, awe-inspiring force that evokes emotion. Your parents are ocean people. Your dad catches waves in the sea while your mom walks along the shore and carves your name in the sand. I don't doubt you'd be a beach baby.

Tonight the many people who remember you are lighting candles in your honor. In my makeshift memorial I looked for things that made me think of you. Two shells plucked from the Santa Barbara shoreline. A plumeria blossom, like the flowers your mom picks up off of the sidewalk, posts on your website, or pins her hair. The sweet perfection of nature.

I saw you in a painting from a friend that hangs on my wall. The pink of your stunning nursery is reflected in the coral sunlit sky. I can't help suspect you'd be a fun balance of tomboy and girly-girl a lot like your mama is. A girl on the edge of the sea, looking out into the waves, strong and beautiful. Shiloh, you aren't forgotten.

Much love,

Emily
(*Auntie Em*)

Candles for Shiloh

2009-10-17T17:36:00.000-07:00

I just wanted to thank everyone that lit a candle for Shiloh last night. I received a lot of emails with kind sentiments and candle photos and it means so so much to me. Every small thing that other people do to help remember Shiloh makes them such an integral part of our healing journey. I am so thankful to have such wonderful family and friends.

Above is a collage of all of the candles lit all over the world (California, Washington DC, Texas, Hawaii, Palmyra Atoll, Australia, Germany, The Netherlands...) for my Shiloh.

Also, if you still have a photo that you haven't emailed to me, please feel free to do so- I will add it into the collage!

Love,
Rachel

Pregnancy and Infant Loss Remembrance Day

2009-10-15T14:21:00.000-07:00

Today, Oct 15th, is Pregnancy and Infant Loss Remembrance Day and I'm missing my Shiloh baby more than ever. Please light a candle tonight at 7.00 pm, in memory of Shiloh and all of the other angel babies. Also, I would love it if everyone could take a photo of the candle they have lit and send it to me!

Reminiscing

2009-10-11T19:25:00.000-07:00

I am barely breathing

Lately, I can’t find the air

Since you’ve up and left me

My smiles have become so rare

Where am I, who am I?

Now that you’re no longer here

My identity and path in life

Have become so unclear

I miss being happy

I miss being so carefree

These are just a few things

That used to define me

I was never depressed

Or disheartened with life

I never felt much stress

Or have been in much strife

So much has changed

Since your heart failed to beat

Now life is dark and bitter

Instead of light and sweet

The tears come and go

With no further warning

I’d no idea it was so hard

To be in a state of mourning

Grief is hard work

Especially for my lost daughter

It knocks the breath out of me

And that’s a tall order

Never again will I feel whole

A chunk of my being- missing

Without you here with us

It’s just daddy and I- reminiscing

Flipped

2009-10-09T17:07:00.000-07:00

My world has been flipped

Right side up is now upside down

So what was once a smile

Is now just a frown

Nothing good that happens

Changes the way I feel

My emotions are strongholds

The deal for me is sealed

Why did you leave me?

We only had a short time

With you in my belly

I was in my prime

Could you feel my happiness?

My joy at every kick?

I was so gleeful gaining weight

I even relished being morning sick

Did I do something wrong?

Should I have been even more attentive?

You were supposed to come out healthy

There was so much incentive

But I know we’re good parents

I feel it in all we do

Therapy, art, websites, poems

It’s all because we miss you

I wish we didn’t have to do this

You should be here in my arms

Flirting, smiling, cooing, giggling

Showing me that Simon charm

I still dream about you everyday

Almost two years in the making

Every detail of you I vividly remember

My effort to retain is almost painstaking

Forever in my heart and mind

You’ll be ‘til the end of days

We’ll be reunited again I’m sure

After walking through life’s harsh maze

-Your Mommy misses you baby girl- kisses to the sky...

The Secret Garden- September

2009-09-30T18:49:00.000-07:00

What has helped you through out this new life the most. Is it your family? Your faith? Support groups? A ritual? Music? Physical activity? A new interest? It could be anything. Tell us about how whatever it is has helped you.

The things that have helped me the most are:
1) Group and Individual counseling (w/Irene Kokatay) at Santa Barbara Hospice. Without this group of people, I would certainly not be where I am today. Andreas and I started going to counseling about a week after we lost baby Shiloh. We were referred to SB Hospice by Michael Cruse, a clinical social worker at SB Cottage Hospital (the staff there were absolutely amazing, btw). At first I dreaded going (actually, I still do! I ALWAYS turn into a crying mess), but I love that Andreas and I have a set time to talk about Shiloh, with people who can understand what we've been through, and continue to go through on a daily basis. It's very comforting to surround myself with those that can understand my feelings of helplessness, hopelessness, purposelessness. I find grief to be very isolating and the never-ending emotional roller coaster to be so tiring. Losing a child is also very hard on a marriage, so not only did Andreas and I both need to work separately on our grief and on ourselves, but we also needed to work together on our relationship. We both have had to adapt to our 'new normal'.

2) Making Shiloh's memorial website. I'd have to say this is the most therapeutic of all. Andreas created the skeleton of Shiloh's website when we 'escaped' up to Big Bear for a few nights, about two weeks after Shiloh was born. We walked around the forest during the day and at night, sat in front of the fire drinking hot chocolate, talking, thinking, dreaming about Shiloh and making her website. It was a great outlet for me at the time because I had all of these things that I wanted to say to her, but didn't have a chance to. There are also so many people that never had the chance to meet Shiloh after she was born, so this was my way of having people remember her and put a name to her face. It also gave people who haven't experienced a loss some insight into how Andreas and I were coping and what we were feeling. I added a blog to Shiloh's website called Whispers to my Angel and continue to update it monthly with letters, poems and information from the media. I've heard from many women that my site is helping them to deal with their grief as well. I feel so honored that these women are able to find comfort there. Through this site, Shiloh has touched so many lives. This makes me so proud.

3) Being artistic (I call it my 'artistic grief')- writing letters and poems, writing Shiloh's name on the beach and on flower petals, taking photos, making terra cotta pots with lost babies' names and messages, making and engraving healing clay rocks, planting flowers, lighting candles for Shiloh, framing and hanging photos of her around the house, making photo albums and writing in her baby book.

4) Walks on the beach. Being near the ocean makes me feel close to her. It's so beautiful and cathartic to feel the breeze, smell the ocean air, and to just clear my head.

5) Blogging/Talking to other babylost women, helping them with their grief, hearing about their experiences and how they made it through amidst all the sorrow and emptiness. They also give me hope of having healthy, LIVE children in the near future.

Letter to Shiloh, from Allison

2009-09-25T17:01:00.000-07:00

My close babylost mamas: Allison, Heather (Lily’s mom) and Pia (Sam’s mum). We all met up in Santa Barbara one weekend.

This letter was written by my closest babylost mama, Allison, mommy to Christian, who is currently pregnant with Christian’s brother. She knows how much I’d love to be blessed with a sibling for Shiloh, so the letter hits home. It was the best birthday present ever- so thoughtful and so touching.

~~~~~~~~~~~~~~~~~~~~~~

Dearest baby girl Shiloh,

I wanted to write you this letter to ask you for a favor. First of all, I am sure you know this, but you have touched so many lives around you, and you are so desperately missed. I know your mommy longs for you, and her heart has been broken. She wanted so desperately to change your diapers, to breastfeed you, to look into your beautiful eyes and to smile at your precious little giggles. She envisioned so much for you, and well, now her life consists of trying to get through the days without you, the love of her life. I know your father couldn’t wait to see you on a little surf board, couldn’t wait to protect you… so many dreams lost by your much too soon departure, but yet so many souls have been touched forever by the magnitude of your presence. I am so grateful to have met your mom. She is such a wonderful and warm person, as you know. I wish she and I didn’t have to meet the way we did. I wish that I had never met her, and she had never met me, if it could mean that you were alive and well in her arms, and my baby boy Christian was alive and well in mine. Sometimes I daydream that you and Christian are playing together, and watching over your mommy and me. We had so many plans and dreams to be mothers to the two most precious babies ever to exist, and now we are just counting down the days until we are with you two again, this I know.

I also know that your nursery, that was prepared out of joy and expectation of your arrival sits empty. I also know that your mother longs to hold a baby in her arms, and to care for it the way she wanted to care for you. Her arms are empty, her heart is aching, and even though you will always be her first-born exquisite angel, she desperately wants a sibling for you to protect from the skies. So Shiloh, I am asking you to send her a tiny little miracle, to help restore her hope, and to give her an ounce of joy back into her life. I know you are a very special little girl, and I ask you to please give her peace and comfort, and to truly give her the strength to smile again. You are an amazing little angel, almost a year old now, and I wish that I had gotten a chance to meet you. I wish that Christian and I had gotten to attend your first birthday party, here on earth. I know that Shiloh means “His Gift”. Thank you for the gift of your mommy’s friendship- I am so blessed to have found her and to have her comfort through these trying days. I feel like I know your beautiful soul through the love and warmth and support of your mother, and when I look into her eyes, I know you live on.

Sending you sweet kisses precious child, and please tell my son that I love him and miss him desperately.

Love,

Allison- Christian’s mommy

The Secret Garden

2009-09-18T16:07:00.000-07:00

For the past 6 months, I've been haphazardly following the blogs of other moms who've lost their babies in one way or another. I've come across an oft used term that perfectly sums up this unspoken sisterhood of women who've lost a child: 'babylost'. It's very fitting: a man who's lost his wife is a widower, a child without parents is an orphan, and a woman who's lost her child is babylost. I've yet to use it colloquially with people who can't relate (i.e. those who haven't lost a child), but I'm going to start integrating it soon enough into my everyday conversations.

From this point on, I'm also going to start participating in a monthly blog questionnaire called The Secret Garden Meeting. I feel compelled to talk more about all-things-Shiloh. Life is going on around me, for me, and I find the pain and the memories, even only 11 months later, becoming dulled. I hate it. I want everything to remain vivid. I want the world to stop for just a moment everyday and carry a silent vigil for baby Shiloh. But I know that's not going to happen outside of my home, so this is my way of preserving her brief existence, her memory. The way The Secret Garden Meeting (TSGM) works is that Carly from Love Reign Over Me posts questions which we then copy and paste into our own blog, answer and then return to TSGM to leave the hyperlink to our blog. This month I will answer her questions from August, even though it's already September (Sept questions aren't posted yet). The topic of "the baby room" seems to come up frequently amongst other babylost parents, and this is what August's questions pertain to.

If you created a bedroom for your baby tell us what it was like.
We did create a bedroom for Shiloh. She is our first child and creating a baby room was one of the leading things on my to-do list. I was so excited. I knew I wanted to paint her room (we live in small, ugly apartment with run of the mill paint!), so I started researching designs within the first few months of pregnancy. After a few weeks, I came across a Disney design that I loved. So I downloaded the templates, printed them out, and went to Home Depot to pick out the Disney paints. My husband and I painted for two straight weeks, and it came out amazingly. The walls consist of three main colors- 2 shades of pink and 1 of brown, and are decorated with trees, leaves blowing in the wind, and birds. The opposite walls have a solid pink on the top half, and different colored stripes on the bottom half (see photos below). We bought Oeuf furniture- a beautiful white, modern crib and changing table/drawers with dark wood trim to match the brown wall; a cream colored futon, a white rice paper lamp and shelf from Ikea; and an old white dresser that I painted in stripes to match the wall. To hang Shiloh's clothes on, my mom and sister had made, just for baby Shiloh, an awesome clothes giraffe. We finished off the room with Baby Einstein layette. Putting her room together was certainly one of the happiest moments of my life.

Did you have it ready for them before they were born?

Shiloh's room was complete about a month before she was born. The last tasks (finished by Oct 15th) were washing all of her little baby clothes, folding them, and placing them into her dressers. I had also put her velour sheets on her organic crib mattress and on her changing table. The diapers and toiletries were organized in the top drawer of her changing table and I made a space for her towels, bath toiletries, and extra sheets in the linen cabinet (which was a BIG task considering the size of our apt!) so we could find all of her things easily when she needed to be bathed and changed. The outfit I was going to bring her home in was sitting neatly in her crib, underneath her Baby Einstein mobile. Everything was perfect.

If so how did you cope coming home to it without your baby?
During the first few months, I just cried uncontrollably every time I went into her room. But I let myself go there. I wanted to feel the pain because I knew what I was missing. I want to fully grieve for Shiloh and this is one avenue for my grief. Most people go into the hospital being pregnant and come home with their baby, but most unfortunately, I wasn't one of those lucky people. So her room held, and still holds, all of these dreams for me. As the months go by, it gets easier and easier to go in there because I let the good feelings come to the forefront, rather than just the sorrow and pain. I still cry and it's still very, very bittersweet, but it's one of the few things of hers that I have.

Did you pack it all away?
No- we didn't pack anything away that was in her room. Everything is still in its place. The diaper cake remains whole on top of her dresser, her French bear, books and cds sit on the bookshelf, the sheets are still on her crib and changing table, her clothes are in the dresser, and her Baby Einstein mobile continues to turn in the breeze. I can't bear to move her things around. They are still hers. Packing up her things, to me, is like trying to pack away her memory.

What is your baby's room now?
Nothing has been changed except to make space for my husband's desk (which I am REALLY not happy about!). He needed his own, quiet workspace and so has usurped a corner in Shiloh's room. I almost feel like he has violated the sacredness of it, but I guess I'll do anything for the breadwinner to be able to work more efficiently! It will always be Shiloh's room though, never an office.

If you lost your baby after they had come home what is it like going into there room now?
Since Shiloh was born sleeping due to an umbilical cord accident, this question doesn't pertain to me.

If you are trying to conceive again, or are pregnant again how do you feel about setting up another room before your baby is born?

When I get pregnant again, we won't be setting up another baby room, but will use Shiloh's. I would love to have her sibling 'borrow' Shiloh's things. If she's anything like her daddy and me, she would have loved to share! I haven't quite thought about what we will do if the next baby is a boy (since her room is pretty girly), but I think we will take it as it comes. I want to do everything differently next time. I feel like doing anything to prepare for another baby (once I am pregnant again) will be jinxing it. I hate that I can't be innocent anymore.

With Me

2009-09-18T14:18:00.001-07:00

(The Gardenia that the Business School at Cal Poly SLO sent us after Shiloh was born- it’s just started to bloom)

I always feel you
Every minute of everyday
You’re with me somehow
Every time, a different way

One day you’re an insect
The next, the wind blowing through my hair
Or the fragrant bloom of a gardenia
Sometimes a reflection in my glassware

The flame of a candle nearby lit
A speck of color in daddy’s eye
The cheekiness of our puppy, Bear
A hot, lazy day in mid-July

A rainbow from the hose spray
A ripe tomato in a friend’s garden
A wave under daddy’s surfboard
My healing clay rocks as they harden

I’m able to see you now
Your presence- in a different light
Not only sadness and loss
Now you can bring more delight

And it’s no longer only me
Bringing you into all facets of life
Now your existence is self-sustaining
Present, omnipotent and rife

These frequent reminders of you
Whether au natural or gifted
My once too-dim outlook on life
An iota more, they have lifted

- Your Mommy, Rachel Simon

Words

2009-08-28T18:50:00.001-07:00

Words fail me
I’m so disappointed in them
They cannot describe
The depths of my sorrow
Which from my heart stems

Everyday I must face
My grief and the world
While armed with no words
To make others understand
Truth and reality unfurled

Isolated from other mothers
I will always be
Stripped naked of my naïveté
Full of fear and doubt
Because the future I cannot foresee

Broken-hearted, empty-souled
Mind and body ravaged
This is now the life I lead
With no language to bear witness
My happiness and hope savaged

- Your mommy, Rachel Simon

The New Normal

2009-08-16T12:15:00.000-07:00

This is the new normal
Where it’s normal to cry
It’s normal to be depressed
It’s normal to want to die

This is the new normal
Where it’s normal to think the worst
It’s normal to be anxious
It’s normal to think I’m cursed

This is the new normal
Where it’s normal to be sad
It’s normal to be scared
It’s normal to be mad

This is the new normal
Where it’s normal to not care
It’s normal to be tired
It’s normal to be impaired

This is the new normal
Where it’s normal to be annoyed
It’s normal to put on a front
It’s normal to feel destroyed

This is the new normal
Where it’s normal to be numb
It’s normal to be avoided
It’s normal to have no fun

This is the new normal
Where it’s normal to hide my feelings
It’s normal to blame myself
It’s normal to be healing

Welcome to my new normal

Angry

2009-08-11T10:26:00.000-07:00

Today’s an angry day
Today I hate the world
Nothing you say matters
I’ve lost my little girl

I don’t wanna hear your gossip
I don’t wanna hear your problems
Unlike my trials and tribulations
There’s a way for you to solve ‘em

I don’t wanna eat right now
No, I won’t drink that water either
Just let me stew alone for once
To come out of this damn ether

I don’t care that it’s a beautiful day
I don’t wanna walk outside
I just want to lie in my dark room
All I wanna do is hide

It will not be ok
I’m not going to move on
You should think before you talk
‘Cos all your saying’s wrong

I don’t have to give it time
It’s not going to get better
Don’t say she’s in a happier place
You’ve never even met her

It didn’t happen for a reason
There’s nothing learned from this
Don’t you see it’s taking everything
Just to make sure I persist

I didn’t lose a parent or sibling
So don’t compare your loss
For you to claim it is the same
Makes me so damn cross

I didn’t ask your opinion
I don’t care about your feelings
Even though it’s been 10 months
I find myself still reeling

Don’t be mad at me
‘Cos I won’t listen to your crap
I’ve got this constant struggle
To wiggle out of this damn trap

Away with your pregnant belly
Don’t rub your babies in my face
Don’t gloat about your pregnancy
I might put you in your place

I told you I was angry
I warned you from the start
It’s hard to be a childless mother
To live life with a shattered heart

Note: This poem came from that dark place lingering inside of me. It’s a good thing I only let it out constructively! For those reading this who have never experienced the loss of a child, please don’t take it personally. I know I need to live life by making small talk, gossiping, connecting with people, in short, dealing with the facets of everyday life. But there are times, like today, in which it feels too mundane. Enter poetry.

Time

2009-07-30T16:17:00.000-07:00

The days become more
The crying becomes less
It’s against my will
But I must confess

I fight for my pain
Yet it hurts me so
Not fully crying for my child
Is my lowest low

My head smarts
My face aches
My heart, already shattered
Continues to break

I can’t see through the hurt
Visions, thoughts, so foggy
My cyclical awakening
Forever opaque and groggy

Hour after hour, nothing new
My whole life- a groundhog day
Acceptance, spiritual transcendence
Have yet to come my way

Can I, will I, someday
Be able to accept this fate
Or will my distress, my emotions
Just simply abate?

The Scarlet Letter

2009-07-22T12:33:00.001-07:00

('L' for Loss)

Day number 268
And still no change in the way I feel
Sorrow, numbness, anger, jealousy
Your loss is still so surreal

I feel like I’m going in circles
No end to a tragic start
Living in a shell of myself
Sustained by a broken heart

I may look normal on the outside
But this is just a mask
Inside I’m struggling for my life
Burdened so by this eternal task

And day after day it pains me
That people will not speak your name
Like they could hurt me any more
Their bliss-less ignorance, such a shame

I alone must live with your loss
For the rest of my life, however long
A scarlet letter burned into my chest
However hard, however wrong

But I tell myself over and over
Time will fade my deep scars
That I won’t recognize this profound pain
Described so adeptly in my memoir

Wishful thinking, I think this is
As I’ll always have this reminder
With this scarlet ‘L’ burned into my chest
The truth will never be the kinder

Six Long Months

2009-06-08T23:44:00.000-07:00

This poem was written by a friend of mine, Allison Spangenberg, who lost her son Christian to an umbilical cord accident on Dec 18, 2008.

In her email she says, “It has almost been six long months since Christian passed away. I am very angry today, and I guess this poem comes from that place, as all of us mother's can understand the stupid things that people say, and I just needed to let it out in a constructive way, without committing homicide. LOL. I am just sick of it, that's all.”

I am posting this because, not only do I think the poem is beautiful, but I can also totally relate to it....

Six long months,
I am told to move on.
I am told to forget,
I am told to be strong.

I am grieving my child,
I am still at square one,
I am counting the days,
will this ever be done?

People forget,
and want to ignore,
they want to pretend
I don't have this chore.

I never wanted this life,
such pain I can't bear.
Life dealt me a hand,
without any care.

The burden is heavy,
I hope I can mend.
And time still ticks on,
It is not my friend.

I cannot resolve
the fact that you're gone.
This isn't the way,
life is so wrong.

I should be so lucky?
A mother to an angel?
Their stupid words,
I wish I could strangle!

Or life will go on,
you can always have more!
But what about the child
I love and adore?!

It wasn't meant to be,
or your child is in heaven,
or it happened for a reason,
at least he wasn't seven!...

People speak and say
the stupidest things.
That God had a plan,
that my angel grew wings.

How does this help
ease all my pain?
His life had a purpose
their words are insane.

Six long months
since you said goodbye.
I am still bereft,
why did you have to die?

No one understands,
our life- it crashes-
so lucky for them,
their rose colored glasses...

By: Allison S.- Christian's mommy
I love you baby boy.... kisses to the sky angel boy....

Seven Months

2009-06-01T21:19:00.001-07:00

Seven long months have gone by
Since you’ve left me, I just cry
Your face so vivid- this will never change
Anything about you, I could never estrange
Thinking about you, now, I can have a bit of joy
But this joy is certainly no decoy
Because the pain is still so damn strong
Living without you will always be wrong
But I choose to carry on
With hopes of more children not forgone
I pray so very hard, day after day
For your siblings to come my way
So I can tell them all about you
Perfection, beauty, love- your virtues

Shiloh's Tattoo (Daddy)

2009-05-22T13:09:00.001-07:00

This is Andreas’s tattoo- the tree of life- with 10 branches, 28 roots and 8 falling leaves to represent Shiloh’s birthday, 10/28/08.

Shiloh's Tattoo

2009-05-13T11:28:00.000-07:00

So, the special significance of the forget-me-not flowers in the Mother’s Day bouquet Emily gave me, is because of my tattoo, or more rightly, Shiloh’s tattoo. Both Andreas and I got Shiloh memorial tattoos last Saturday (May 9), after 6 months of thinking about them. We wanted them to be extra special. So, I drew mine- a few stems with forget-me-not flowers on them. There are a few legends about what forget-me-not flowers represent, but the overall theme is pretty self explanatory- love and tragic fate- the epitome of Shiloh. We will never forget her. But there is more to it. I worked her birthdate, October, 28, 2008, or 10/28/08, into the drawing. There are 10 stems (or rudimentary stems), 28 petals (5 on each flower and 3 closed flowers with only one petal showing) and 8 flowers.

Andreas’s tattoo is the tree of life into which I worked 10 branches, 28 roots and 8 falling leaves. I will post a photo of his soon.

Mother's Day Flowers

2009-05-11T14:48:00.001-07:00

My friend Emily gave me these flowers for Mother’s Day, from her garden. They are so pure and beautiful, just like little baby Shiloh. They also have very special significance because of the forget-me-not flowers (bottom photo). I’ll write again later to explain why...

Mother of an Angel Day

2009-05-10T11:30:00.001-07:00

This is my first Mother’s Day
With no bubbly daughter to show
How wrong it feels with no earthly child
This, some may never know

But for those of you who can understand
My heart goes out to you
For we are the most unfortunate ones
With that, no one can argue

Yet mothers we are, nonetheless
We gave birth to a wonderfully perfect baby
They are with us in heart, in spirit
About this, there is no maybe

We love them dearly, forevermore
And no one can take this away
In saying this, I wish all you mommies
A bittersweet, Happy Mother’s Day

A Mother's Day Wish from Heaven

2009-05-08T18:29:00.001-07:00

A poem sent to me from another mom of a heavenly baby:

Dear Mr. Hallmark,

I am writing to you from heaven,
and though it must appear
A rather strange idea,
I see everything from here.
I just popped in to visit,
your stores to find a card
A card of love for my mother,
as this day for her is hard.
There must be some mistake I thought,
every card you could imagine
Except I could not find a card,
from a child who lives in heaven.
She is still a mother too,
no matter where I reside
I had to leave, she understands,
but oh the tears she's cried.
I thought that if I wrote you,
that you would come to know
That though I live in heaven now,
I still love my mother so.
She talks with me, and dreams with me;
we still share laughter too,
Memories our way of speaking now,
would you see what you could do?
My mother carries me in her heart,
her tears she hides from sight.
She writes poems to honor me,
sometimes far into the night
She plants flowers in my garden,
there my living memory dwells
She writes to other grieving parents,
trying to ease their pain as well.
So you see Mr. Hallmark,
though I no longer live on earth
I must find a way,
to remind her of her wondrous worth
She needs to be honored,
and remembered too
Just as the children of earth will do.
Thank you Mr. Hallmark,
I know you'll do your best
I have done all I can do;
to you I'll leave the rest.
Find a way to tell her,
how much she means to me
Until I can do it for myself,
when she joins me in eternity.

- Jody Seilheimer
Heartfelt Words by Jody
In Memory of Her Son, Cory
Friday, May 8, 2009

Drowning in the Ocean

2009-04-29T12:43:00.000-07:00

I want to swim away from myself
But I can’t seem to find my arms and legs
Sometimes it feels like I’m drowning in the ocean
No life preserver, no snorkel gear, no scuba diving regs

Let the waves come crashing down
Wash over me, give me finality
Let it clear me of my pain, absolve me
Take me away from this harsh reality

I’m weighted down by all my sorrow
I scramble to keep my head above water
Do I surrender or do I struggle
There’s only one way I’ll see my daughter

It’s such a cold and lonely place
Frigid water seeps into my nose and ears
My body aches for solid ground
Instead I’m left here to drown in my fears

But I forge ahead, I look around directionless
No guiding light to bring me home
I search for anything, a sound, an object
In perpetual darkness I’m left to roam

There is no happy ending to this, I know
More pain and torture is certain
I’m treading for my life in vain
Forever trapped behind this dark, heavy curtain

The Surface

2009-04-23T21:07:00.001-07:00

The surface
It can be a very lonely place
Sometimes it can be false
Lacking depth
But sometimes a safe place
Feelings can barely scrape it
Feelings can delve beneath it
It can be smooth
Or cratered with loss
It can be pure with innocence or naiveté
Or impure with experience
It can be dry and dead on top
But can be scraped to give new life
Inevitably, it will get old
Over time it will wear thin
It will damage
This surface
This protection
It will soon wither
And leave you defenseless

Six months, cont'd

2009-04-22T11:14:00.000-07:00

You are 6 months today (in calendar days- your birthday is April 28), and I have been trying to write you all day, but all I can do is cry. I miss you. I miss you so much that I have been pushing myself into a happier future, because otherwise the pain of your loss will drown me. I feel you miss us too and it makes me sad, but I know that you can feel us all around you. We are everything good, positive and strong. We are the oxygen in your air, the ground under your feet, the singing of the birds, the warmth of the fire and the sweetness in your birthday cake. You brought the best out in us. This will never change. Happy birthday, I love you Shiloh Jayden.

- Your Daddy

Six months

2009-04-21T18:52:00.001-07:00

Shiloh. Today is your 6 month birthday. On the one hand, I can’t believe that I have survived 6 months without you. It feels like just yesterday that I was holding you in my arms, feeling your heat having come fresh out of the womb. On the other, I can’t believe it has only been 6 months… It feels like lifetimes have passed me by.

Where am I in my grief? I’m still angry, I still feel cheated and I still can’t be around mothers and babies. And of course, I am still so, so sad and so heartbroken. I say this last because I know that it will never change. I am trying to stay the course though. I am striving to make my life have meaning, to have quality again. I am striving to feel joy again. I am striving to more deeply learn the importance of living in the now. I am striving.

I think I might open your memory box today. It’s been a while. I know the emotions come strongest when I touch your things, when I smell you. I have to prepare myself for that. Ah, here come the tears. Just by thinking about it… I didn’t even know I was crying. It’s so natural for me nowadays.

But with each day I also get better and better about boxing up my feelings, pushing away the pain. I hate that I can do that, that I can actually function most times. It seems unfair to you, although I know you wouldn’t want me to be miserable. I just wish that you could be more present in my life. I wish I could dream about you. I miss you terribly baby Shiloh. I wanted you to be so much
more for me, for others.

I love you so very much. I hope you’re up there in heaven making wishes and blowing out your .5 candles!

The Yin and the Yang

2009-04-05T21:42:00.000-07:00

Just like the Yin and the Yang
My emotions are complimentary opposites
My world was so airy
So light when I was pregnant with you
Without you, my world is heavy
Occluded in such darkness
Breathing came so easily to me
Expansion, contraction
Expansion, contraction
But now, breathing is so difficult
Pull, push
Pull, push
I was so rich
So fulfilled to have you in my life
Now I’m so poor
So empty because you are gone
I was moving forward
So dynamic
Now I feel stagnant
Unable to change
But for others, life continues on
Relentless
Because I love you wholeheartedly
Unconditionally
I feel despair
Depression for having lost you
There was so much pleasure
Now only pain
And just like the yin and the yang
Everything that lives
Must die
However early
But in every end
I believe
I pray
There must be a new beginning…

Not a baby anymore

2009-03-26T19:07:00.000-07:00

Shiloh baby-

In our attempt to heal ‘better’ (I suppose), daddy and I have been doing craniosacral therapy with Rita through Santa Barbara Hospice. I can’t say that I really believed in these alternative healing therapies before, but now that I have tried it, I find it amazing. Even if I don’t exactly feel the redistribution or equalization of energy in my body, I am always relaxed, sometimes so much so that I fall asleep. To feel relaxed nowadays is not something so easily accomplished for me, and so I grasp at any offer of peaceful moments. But today was even more special for me because I had the chance to see you, through daddy, as an older child. I’ve heard many times that babies grow up faster in heaven then they do here on earth- this was my proof. The first thing I asked, when he told me he got to see you today in his session, was if you were happy. He said that you had a big smile on your face. I will take this as a yes, and for this, I am so thankful. Here is what he told me:

You were about 9 years old. You were wearing a little dress, had your blonde/brown, long hair in a ponytail, and you had a tooth missing in the front because he could see the gap when you smiled. You looked a lot like me, but had a bit harsher features, still feminine, but more a mixture of daddy’s and mine. You were skipping in a field where one would normally find wild horses. He said that you went to a chopped down, hollowed out tree where water was collected and washed your hands in it. He said that he knew you could feel us there because I was the wind, playing with your hair, and daddy’s reflection was in the water in which you washed your hands. And… there was an older man sitting on the porch of an old farmhouse in the field, watching over you.

Daddy said he couldn’t see clearly who this was, but I already know. This was grandpa, my daddy. I’m so happy that you’ve found each other and are looking after each other. My heart is so filled with sorrow that I do not have you both here with me on earth, but knowing that you are together makes my pain just a little more tolerable. I will love you until the end of time Shiloh; heavenly or earthly, you are forever my first child.

The Well of Grief

2009-03-07T11:28:00.001-08:00

(Grief by Gene Gould)

Those who will not slip beneath
the still surface on the well of grief

turning down to its black water
to the place that we can not breathe

will never know
the source from which we drink
the secret water cold and clear

nor find in the darkness
the small gold coins
thrown by those who wished for something else

- David Whyte

The Umbilical Cord

2009-03-06T15:07:00.000-08:00

If the umbilical cord is your only line to life
The last thing it should do is to cause you strife.
You would think that G-d perfected this vital organ by now
Thus death to unborn children he would not allow.
But sadly even he cannot prevent tragedies such as this
If not G-d, if not woman, than who is remiss?
I suppose I realize now to place blame is so slight
Because in the end it will not bring my sweet baby back to life.

On Sorrow

2009-03-05T15:37:00.000-08:00

(Sorrow by Jacob Kleyn)

Some of you say, “Joy is greater than sorrow,”

    And others say, “Sorrow is the greater.”
But I say to you,
    They are inseparable…
The deeper that sorrow carves into your being
    The more joy you can contain.

- Kahlil Gibran

Grief

2009-03-03T21:36:00.001-08:00

I came across this photo on a hospice website and started to write about how grief is like water. But, while searching the web, I found a blog on the exact wavelength written by a woman that just lost her brother-in-law. She says it much better than I ever could have. Here is what she writes:

Grief is like water.

It comes in waves, like you've always heard, crashing and receding and pounding out of your control. Sit on the edge of the water on the beach and see if the waves stop lapping and splashing at your feet. They don't. Ever.

But grief is also like water in that sometimes you move past it, you go on with life and you think you're okay until you realize that your mascara is running down your face and the book you're holding is drenched. Then you notice the ultra fine mist that is falling on you. It's the slightest twinge of pain, now that you've noticed it, constant but undemanding.

Grief is like a shallow pool, deceptively calm, with jagged rocks just below the surface. Step in just the wrong way, at the wrong speed or without proper protection and you'll find yourself nursing an open wound again. Under some circumstances, it's possible to drown in a few inches of water.

Grief is the deep sea, without a floor or anything solid within reach, pressure mounting on all sides without the luxury of a moment to examine, consider, take a breath. It stretches out as far as the eye can see, sounds of an ear-bursting roar and fills the nose when all you want to do is breathe in air. It overwhelms you when you're in it, but to those on the safety of land or in a boat, the danger seems minimal.

Grief, like water, can cleanse, it can purge, or a person can drown in it.

- Reese (kicking-it-in-crazyville.blogspot.com)

Grandpa and Shiloh, together

2009-03-02T22:01:00.000-08:00

Sweet baby Shiloh,

Yesterday, March 1st, you met your grandpa, my dad, for the very first time. He passed away after a 5 month fight against pancreatic cancer. I miss him so much, but I know that our loss is your gain. He was the kindest, most influential, most loving, most trustworthy man in my life for the last 28 years, and now he is all yours. You couldn’t wish for a better grandpa. Knowing that he is finally able to hold you in his arms fills, just a smidgen, that bottomless crevasse in my heart that formed when I lost you 17 weeks ago. Maybe he will even get to watch you grow up into that beautiful woman I always dream you to be.

I love you Dad

2009-03-02T12:23:00.000-08:00

In memory of my dad, Lou, who passed away yesterday, March 1st at 3 pm, after a valiant fight against pancreatic cancer. I miss him so, so much, but know that he will be with his granddaughter, Shiloh, and his parents, Bea and Sam, in heaven.

You Come Back to Me

2009-02-22T13:05:00.001-08:00

The other day, in our bereavement group meeting, we were talking about how our children come back to us. Some babies come back as light, some as wind, some as the full moon. To me, you come back as insects. I don’t know... maybe it has to do with my tendency towards all things biology! So, I was inspired to write this poem.
~~~~~~~~~~~~~~~
Every night
You seem to come back to me
As your insect of choice
An ant, a spider, a moth, a bee.
You sit on the wall at night
Ushering me into sleep
Or visit me in the shower
Along the ceiling you creep.
I can walk along the beach
And find you beneath the sand
Or on a warm, moist night
Landing so gracefully on my hand.
I can grab a piece of fruit
And see you hovering nearby
So small and meek
Today you’re a fruit fly.
Even in the dead of winter
When no bug is in sight,
A butterfly flies behind me
All nimbly and bright.
I see you now,
Peering at me with so many eyes,
Who would have thought
You could live so many lives.
Yes, everywhere I go,
A four or six-legged creature follows
I can’t help but think that it’s you,
So in your memory I wallow.
You’re always here with me, Shiloh
In one way or another
And it’s so funny to feel
Like an insect’s mother!
But I’ve come to love
These special visits from you at night
Because you are the last thing I touch, I see
Before I turn out the light.

Burden

2009-02-10T09:37:00.000-08:00

It is so unfair,
This heavy burden we both must bear.
My future stolen from me in the blink of an eye,
Your life stolen from you, no chance to say goodbye.
Why are we subjected to all of this pain?
I do not know, I cannot feign.
But in all things we seem to meet constant adversity,
They tend to always end so awfully.
Are we just doomed people? Am I too fatalistic?
Or are our experiences just randomly tragic?
The answer to this, I may likely never know,
But it doesn’t matter anyway because woe is woe.

They Say There is a Reason

2009-02-09T09:30:00.000-08:00

They say there is a reason, 
They say that time will heal, 
But neither time nor reason, 
Will change the way I feel, 
For no-one knows the heartache, 
That lies behind our smiles, 
No-one knows how many times, 
We have broken down and cried, 
We want to tell you something, 
So there won't be any doubt, 
You're so wonderful to think of, 
But so hard to be without.

- Author unknown

Daddy's Letter to Shiloh #2

2009-02-08T19:16:00.001-08:00

What am I going to do without you, Shiloh? Wherever I look, I see your little face, your closed eyes. You look like you are dreaming. But you are not dreaming, Shiloh, you are dead. The realization of this and what it will mean for mommy and me becomes heavier by the day. Heavier, because I know I will never get more from you and I will never be able to give more to you. The pictures of you will be the same forever. There will be no new memories, no family vacations with silly pictures of us, no milestones in your development to document and to share. I know so little about you, but I want to know it all.

What will I tell people about you? What do I want to remember about you? You are my child, but to remember you just hurts so damn much. The good memories- CRAP, the plane just shook- is this you, sweetie, telling me that you are here with me?

You are right, there are good memories of the pregnancy with you- 39 weeks and 5 days worth- your development in mommy’s tummy, your kicks and punches, buying things for you and picturing you wearing them, reading about being a daddy and dreaming about being one for you, the summer off- just getting ready for you. Is this the way I should see it, glass half full- I had you and you will always be my child, rather than glass half empty- I will never have you fully. I think I need more time to see the glass as half full, but I may never see it that way. I miss you. I miss myself. And I miss mommy.

Your loss changed us forever. So what am I going to do without you? I will have to learn to live with it. I will have to reserve a part of me just for you. This part has to be really strong. I will also have to learn to find myself again. This means that I will have to separate my life and yours. But I also know that I don’t have to be miserable, angry, absent-minded, directionless, and unhappy, to miss you. I love you. You are my child, and I hope that, with time, I can see it this way without losing the ground from under my feet every time I think about you.

Just Those 39 Weeks

2009-02-04T15:09:00.000-08:00

For just those 39 weeks
I had you to myself.
And that seems too short a time
to be changed so profoundly.
In those 39 weeks,
I came to know you...
and to love you.
You came to trust me with your life.
Oh what a life I had planned for you!
Just those 39 weeks...
when I lost you,
I lost a lifetime of hopes,
plans, dreams and aspirations.
A slice of my future simply vanished overnight.
Just those 39 weeks...
It wasn't enough time to convince others
how special and important you were.
How odd, a truly unique person has recently died
and not enough mourn the passing.
Just a mere 39 weeks...
And no "normal" person would cry for months
Over a tiny, dead baby,
or get depressed and withdraw day after endless day.
No one would, so why am I?
You were just those 39 weeks, my little one.
You darted in and out of my life too quickly.
But it seems that's all the time you needed
to make my life richer
and to give me a small glimpse of eternity.

- (Adapted from) S. Erling

Wreckage

2009-02-03T15:54:00.001-08:00

I’m sifting through the wreckage that is my life
I can’t seem to find what I am looking for
Salvation?
Comfort?
A pain-free existence?
Everything is in jagged pieces
A veritable mess
Almost unrecognizable
There’s nothing to turn to
Nothing to lessen my pain
Nothing to take it away
Your time has come before it has come
Because of this, I am furious
I am holding my breath
Why was I denied my happy ending?

Letter to Shiloh #6

2009-02-02T13:00:00.000-08:00

Daddy and I just got back from a visit with Dr. Collins in Baton Rouge, Louisiana. He is a G-d send. This man really cares and is willing to spend all his free time talking about what happened to you and what to look for next time we have a baby. I was worried about being in such a public place, and talking for so long, because I was afraid of being too emotional. Every time I think about you, I cry uncontrollably. I haven’t yet made it to the point where I can feel bittersweet about your memory. I don’t think that this will come for a long while though.

Nevertheless, I didn’t break into tears until, in the middle of our conversation, Dr. Collins received a call from another woman who just recently lost her baby due to a UCA. He asked if I wanted to speak with her. In hearing the pain in her voice, my own came rushing back, unrelenting, unforgiving. My three-month-old wound had been torn open yet again.

The feeling of helplessness and emptiness is renewed and more palpable, and all of the sudden, it happened just yesterday. How unfortunate for my body, which has such short respite between powerful bouts of sorrow. I felt myself crawling inwards as I visualized, for what must have been the hundredth time, pushing out your lifeless body. With every memory, the edges of my agony get a tiny bit duller, but it’s still enough to rock my world.

It is so difficult for me to comfort other women, even though we’ve had the same or similar experiences, because my pain is still so raw. I am lost for words, I think because, no matter what I say, it’s not going to bring their child back. But I feel like I owe it you Shiloh, to attempt to console others. I feel this sense of entitlement to the unwanted wisdom that goes along with such an experience. It’s somewhat selfish because I want everyone to know your name, to know what you look like, to know just how much you are loved. And I want these women to reach out to me and tell me about their lost sons and daughters. You are people. You lived. You loved. You are loved.

Daddy's Birthday

2009-01-21T22:40:00.000-08:00

Today is daddy’s 33rd birthday and he is so incredibly sad. We both are. We thought that we would be able to share this day with you. We pictured ourselves pushing you around in your new stroller, taking you to the beach and playing in the sand, kissing you goodnight. We pictured ourselves doing so many things with you. But we find ourselves alone and sorrowful. We’ve lost our future in you. Direction hasn’t found us, purpose hasn’t fulfilled us, and emptiness still lurks, especially in the daylight hours. Come back to us. It’s impossible to really live without you.

Shiloh Jayden

2009-01-20T16:45:00.000-08:00

Serene
Hearty
Innocent
Lovely
Omnipresent
Heavenly

Joyful
Angelic
Youthful
Delicate
Exquisite
Natural

Elizabeth McCracken's Memoir

2009-01-16T15:48:00.000-08:00

I recently finished a memoir by a woman who also lost her first baby (An Exact Replica of a Figment of My Imagination by Elizabeth McCracken). She perfectly describes so many experiences and feelings that I am unable to find words for. It’s surprisingly very satisfying for me to see those words, to know that they are universal amongst women who’ve experienced the loss of a baby.

“I just thought he was a sure thing,” she says of her stillborn son early on in the story. This sentence so accurately encompasses my own disbelief and horror at what has happened. After overcoming the shock and numbness, she writes of the days after, "Nothing had changed. We'd been waiting to be transformed, and now here we were, back in our old life." I’ve said this almost verbatim to people I have spoken to about you, and have written it to you in your letters. Nothing has changed, but everything has changed. It’s such a terrible feeling, knowing that we were supposed to welcome you into this world, to have you become the center of our lives, and then in the blink of an eye, to have to say goodbye to you and live without you forever.

She also talks about how she thought (as did I... how naive of me) stillbirth was a thing of the past, something from the Victorian age- black and white photos of dead babies, eyes closed, brows furrowed, dark lips, toys stuffed into their lifeless hands. Who would have thought that there are, to this day, still so many stillbirths (2/100 births in the US). If it is so damn common, how come doctors do seemingly nothing to prevent it?

Elizabeth McCracken had me empathetically nodding in agreement at almost every statement. Yes, I’ve said that. Yes, I’ve experienced that. Yes, I’ve done that…. I feel as though I could write a strikingly similar story, the plot and the outcome, much to my dismay, unchanged.

Unspoken Sisterhood

2009-01-11T22:13:00.000-08:00

There is an unspoken sisterhood
A group of women with babies born still
Those who’ve made it through
Those who’ve had the will

We are strong, perseverant and determined
That is without a doubt
But we are no longer whole
We’re brokenhearted and empty throughout

We’re driven to find others who can understand our pain
The turn our lives have taken being so unplanned
We’re overwhelmed with confusion and questions
Yes, we’ve been dealt a raw hand

We thought we’d be fulfilled and joyful
Getting little babies to bring home
But in the blink of an eye, we’re empty-handed
Altered paths we’re left to roam

Now we seek the answers to questions unthought-of
Not researching the assumed baby rashes and remedies
With the Internet as our source
Instead we read blog after blog of dead babies

So it’s this way that we learn of each other
Through websites, blogs and notes
Otherwise complete strangers
With an experience of which we cannot gloat

It may sound strange to others
But about our loss we can freely talk
In each other we seek comfort, support, a shoulder on which to cry
You can’t fully comprehend until in our footsteps you walk

It’s like we’ve known one another all of our lives
And we realize there’s only one side to this coin
This is why we are so thankful for each other
But truthfully, this is a sisterhood you never want to join

-Rachel Simon