Double Rainbow

There was a sudden downpour yesterday that led to this beautiful sight out our back window. 

A double rainbow.  One strong, one hazy.  It felt like a metaphor.  We have our rainbow.  Sam is here, strong and vibrant.  He can light up a room with his laugh and wants so much to do it all.  

But I have a wish.  Another. It’s hazy.  Now is not the time, we have too much going on with all of Sam’s medical issues and delays.  We need a rest.  And Owen is going off to kindergarten in the fall.  There is no good time to be on months of bedrest. To have a newborn and the sleep deprivation and whirlwind that comes with a tiny person’s needs.  

I have said we are done.  I think it’s true.  Dan is done. But I see this and I can’t help but think about how much I’ve never stopped wishing that it was different.  

When I was pregnant with Sam I couldn’t look beyond the next day or week.  Imagining him out and alive seemed like such a huge assumption.  Tempting fate.  I couldn’t let my self think of a future.  The hope was too scary and the alternative too crushing.  So I never saw him as “the last.” The last pregnancy, last newborn, last baby.  So I struggle to retroactively apply that.  He is the bright and vibrant rainbow. I just didn’t know there wouldn’t be a pot of gold at the end.  

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Microblog Monday: Due date, again.  

Saturday was the 3rd anniversary of Noah’s due date.  We didn’t do much. It was a busy day, and a holiday (Purim) to boot.   I wore a hot air balloon skirt.  We lit his candle.  I wished a wistful happy birthday to a friend’s son whose second birthday was that day.

It’s been three years.  It’s a due date, not a birthday.  But it still hits me.  This whole week I will suddenly catch my breath as my eyes fill with tears.   Missing him still breaks me.  

Microblog Monday : Eye of the Beholder

I have a love/hate relationship with Timehop.  It often makes me sad, but I wouldn’t trade the photos, the memories, and the emotions for anything.  


This picture showed up this week.  I remember the trip, and the picture all too clearly.  What always strikes me with this photo is how I know others see it, versus my reaction.  

To the outside world, and probably even the person taking the picture and the other people in it, it is a simple, sweet photo of a family.  

For me, all I can see is what’s not there.  Noah.  I should have been 37 weeks pregnant.  Or even had him with us.  We should never have been able to go on that hike to that scenic place.  My in-laws (who took the picture) shouldn’t be there.  They should have waited another month and a half to come visit the new baby.  

It’s all in the eye of the beholder. 

When words fail

There are so many things that Owen and Sam have in common.  I often wonder if Noah would have been our outlier, or just like his brothers.  

Would he have had their blue eyes, their love of music, singing and dancing? Would he have shared their trouble sleeping, eating, their late mobility, and speech delays.  

Sam is almost the age that Owen was when Noah was born.  Owen and I talked about Noah a lot.  Every day he would pat my stomach and say “baby.”  And I would reply, “no, baby Noah came out.  He died.”  

Sam and I don’t have that daily conversation.  I want so much for him to know, to understand his brother.  But it’s hard, in part because Sam has a speech delay.  He doesn’t even have a word for Owen yet.  

Owen had a speech delay too.  At 19 months, they each were evaluated and found to have the speech level of an 11-13m old.  By 21m Owen was in speech therapy.  He made quick, amazing progress and around 26m, he graduated from speech.  He is now a voracious communicator.  

By contrast, Sam will be two in 2 weeks.  We still don’t have a speech therapist due to a “staffing shortage.”  He wants to talk.  He is extremely motivated, but we don’t have the tools.  This has now escalated to conversations with the director of the state early intervention program, and getting a lawyer.  It’s a battle.  But I want to desperately to be able to talk to Sam and know what he understands.  About everything, but particularly about Noah.  I want him to know his brother.  To have words for both of them.  

This election is personal

Or the letter I am too afraid to share with those I love.  

Dear Friend or family,

You are considering voting for Trump. You’ve heard all the news. I don’t think there is anything I can say about Mr Trump that would change your mind.  

But I would like to talk about Mike Pence, Trump’s running mate and governor of Indiana. Mike Pence not only signed, but advocated for a law that specifically bans terminations (including by induction of labor) for reasons of medical diagnosis of severe or fatal conditions.  

To make this personal, I’d like to remind you that we had a 100% fatal diagnosis for Noah. If we had lived in Indiana, or if Trump/Pence were to able to push this through nationally (a huge fear of mine) our story would have been all the more heartbreaking.  

As it was we got Noah’s diagnosis, 2nd opinion, and chose to induce labor. We were able to have my mom come and stay with Owen and meet Noah. I was able to deliver him, hold him immediately, and spend as much time with him as I could. It was devastating and heartbreaking.  
But if this law had been in effect, we would not have had that option. I had terrible hyperemesis. Before Noah’s diagnosis, we were discussing implanting a feeding tube for the remainder of my pregnancy. We would have had to do that. We would have to wait. To explain every day to our two year old that yes, his baby brother was in mommy’s tummy now, alive, but that he would die within minutes of being born due to the severe brain damage that left him unable to even breathe. And I would have had to deal with every person who I saw in the next 4 months congratulating me. Asking about our baby, and deciding whether or not to tell them, or whether I could wait until I was alone to cry.  

In addition to surgery to implant the feeding tube for me, I would have required another surgery. Because of his hydrocephalus (excess fluid in his brain that was crushing it and causing massive brain damage) his head was growing rapidly and a vaginal delivery would not be safe. So I would need a cesarean. I wouldn’t be able to hold him right away, because I would be in surgery. I would be strapped down and stitched up while my son was dying. I would have to lay down on that table knowing that the law said that my son had to die away from me.  

My son Noah now has a younger brother, Samuel. He doesn’t replace his brother, but having him here helps me heal. But if I had been forced to have the cesarean at 36 weeks instead of inducing at 20 weeks, his pregnancy would have been very different. Having less than 18 months between deliveries after a cesarean puts you at greater risk for a uterine rupture, which can be life threatening for both mom and baby. My boys are only 16 months apart and it took us months of fertility treatments to have Samuel.  

There are so many choice that a ban like takes away. And they all harm parent and siblings who are already enduring the worst grief imaginable. The fact that Pence would choose to specifically target families like our, to take away our right to let our baby go with peace, is unconscionable.  

So please, consider me when you cast your vote. Consider all of the other families like ours. Consider that it could one day be someone you love. And consider what a vote for a ticket with Mike Pence on it does to us.  

This election is personal

Or the letter I am too afraid to share with those I love.  

Dear Friend or family,

You are considering voting for Trump. You’ve heard all the news. I don’t think there is anything I can say about Mr Trump that would change your mind.  

But I would like to talk about Mike Pence, Trump’s running mate and governor of Indiana. Mike Pence not only signed, but advocated for a law that specifically bans terminations (including by induction of labor) for reasons of medical diagnosis of severe or fatal conditions.  

To make this personal, I’d like to remind you that we had a 100% fatal diagnosis for Noah. If we had lived in Indiana, or if Trump/Pence were to able to push this through nationally (a huge fear of mine) our story would have been all the more heartbreaking.  

As it was we got Noah’s diagnosis, 2nd opinion, and chose to induce labor. We were able to have my mom come and stay with Owen and meet Noah. I was able to deliver him, hold him immediately, and spend as much time with him as I could. It was devastating and heartbreaking.  
But if this law had been in effect, we would not have had that option. I had terrible hyperemesis. Before Noah’s diagnosis, we were discussing implanting a feeding tube for the remainder of my pregnancy. We would have had to do that. We would have to wait. To explain every day to our two year old that yes, his baby brother was in mommy’s tummy now, alive, but that he would die within minutes of being born due to the severe brain damage that left him unable to even breathe. And I would have had to deal with every person who I saw in the next 4 months congratulating me. Asking about our baby, and deciding whether or not to tell them, or whether I could wait until I was alone to cry.  

In addition to surgery to implant the feeding tube for me, I would have required another surgery. Because of his hydrocephalus (excess fluid in his brain that was crushing it and causing massive brain damage) his head was growing rapidly and a vaginal delivery would not be safe. So I would need a cesarean. I wouldn’t be able to hold him right away, because I would be in surgery. I would be strapped down and stitched up while my son was dying. I would have to lay down on that table knowing that the law said that my son had to die away from me.  

My son Noah now has a younger brother, Samuel. He doesn’t replace his brother, but having him here helps me heal. But if I had been forced to have the cesarean at 36 weeks instead of inducing at 20 weeks, his pregnancy would have been very different. Having less than 18 months between deliveries after a cesarean puts you at greater risk for a uterine rupture, which can be life threatening for both mom and baby. My boys are only 16 months apart and it took us months of fertility treatments to have Samuel.  

There are so many choice that a ban like takes away. And they all harm parent and siblings who are already enduring the worst grief imaginable. The fact that Pence would choose to specifically target families like our, to take away our right to let our baby go with peace, is unconscionable.  

So please, consider me when you cast your vote. Consider all of the other families like ours. Consider that it could one day be someone you love. And consider what a vote for a ticket with Mike Pence on it does to us.  

Capture Your Grief Day 27: Family is Forever

I have three little boys. Between Noah and Sam I had one confirmed miscarriage and several more suspected. They all ended very early. We weren’t using the fertility drugs yet, and that had never resulted in a living baby for me.  

This is our family. Three little boys and our shooting starts that passed so briefly but were so wanted. So loved. Our family isn’t whole. It isn’t complete. Pieces of us are missing. But we hold onto each other. Love each other. And we talk about those who live forever in our hearts.  

#CaptureYourGrief #CaptureYourGrief2016

Capture Your Grief Day 26: #WhatHealsYou

#Whathealsyou

  • Your siblings
  • When people talk about you
  • When you are treated like a full member of our family
  • Making items for other bereaved families
  • Acts of kindness in your name
  • Feeling close to you
  • Talking about you
  • Your birthday rituals
  • Including you in holidays
  • Writing about you
  • Seeing hot air balloons
  • Seeing butterflies


#CaptureYourGrief #CaptureYourGrief2016

Capture Your Grief Day 25: I Am

I wish that Noah was alive today
I remember my mom’s voice when I told her the news.
I could not believe we had to choose a funeral home before they started my induction.  
If only we knew why. 
I am a mother of three beautiful boys even though you can only see two with me.  

I am a bereaved mother.  I am not alone.  I am 1 in 4.  


#CaptureYourGrief #Captureyourgrief2016