Sunday, September 8, 2013

The Domestic Enemies of the Grieving Mom


Two years ago today, a little boy died named Jack Donaldson. He was swept away in a flood not far from where I live. I didn't know him or his family. But that day, when it started raining hard and then harder, I felt something that might best be described as foreboding  There was just... a great disturbance in the force.

Then I found out what happened. That this precious boy was dead. It might sound stupid but I've not been the same since. It was like a wake up call - THIS CAN HAPPEN. Your child could die. There will be no rhyme or reason and going back in time five minutes to change everything. It will be like a dream you can never wake up from. You can read all about it here on his moms's beautifully written blog An Inch of Gray. Be warned, it is very sad, haunting and incredibly well-written. It may change you, too. 


The whole purpose of the Domestic Enemies series is to rant a little, but mostly to try and see things from a different perspective. I want to be one of the people who gets it. When I received this post from a reader last week, I was grateful - because that's exactly what she is trying to tell us. I didn't edit a single word. She needed to get this out and I needed to read it - so here it is. 

On this day I honor Jack and his family. This feels awkward, because I don't them. But I'm doing it anyway because his death had such an impact on so many. Here are The Domestic Enemies of the Grieving Mom... May it help us be there for someone we love if we ever find we have to.

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I am the Mama of two children here on earth and two angels in heaven.  My son (5) is a study in perpetual motion and will henceforth be known as the Energizer Bunny.  My daughter (2 1/2) is my Diva Buddha baby.

I have to tell you a little of my story so that you will understand my rant.  In May of 2012, to my utter surprise since my baby had just turned one, I found out I was pregnant.  I would say it was the biggest shock of my life, but that distinction is reserved for the moment that I found out that I was actually pregnant with TWINS.  I was hysterical.  My husband had to literally put me in bed for the day, laughing at me while I was racked with the sob-sobs. (Ladies, this one is a keeper!)  This twin pregnancy meant four children aged four and under. (My mother-in-law (who is a salty broad and that is why I lurve her) made me swear that I would not start wearing prairie dresses and curl my bangs a-la Michelle Duggar.  I was like, "Whatever. That woman ROCKS.") We wrapped our heads around our ridiculous fertility and fell in love with the buns in our oven.


Fast forward to the 24th week of my pregnancy when I was rushed by ambulance to UCSF, screaming in pain until blood vessels burst in my eyes.  I was diagnosed with severe Twin to Twin Transfusion Syndrome. TTTS occurs in a small percentage of identical twin pregnancies.  The twins had formed a shared blood supply because they shared a placenta.  They were passing nutrients and waste to each other instead of back through my system to be processed.  This made the amniotic fluid in my belly build up because it was not being disposed of correctly. 


 (My belly was so big that, after I had surgery to remove the aforementioned excess amniotic fluid, my surgeon shared this gem: "We took out almost five liters. That is truly impressive!" Oh goodie.)

Severe TTTS has a 60%-100% mortality rate for the babies because there are severe fluctuations in blood pressure between the twins. There are also size discrepancies between them. (More about TTTS at the bottom.) I spent the better part of four weeks in and out of the hospital trying to save my babies.  After two procedures our small twin, Therese Casey, passed away.  I was pregnant with her sister, Amelia Rose, for three more weeks.  Then Amelia passed away on October 9th 2012.  I delivered my stillborn twins that night.  This is the most excruciating, searing, and crippling experience that I have ever had.

I would like share with you some stuff that is not so fun for a grieving mom to have to deal with.  And I also have some positive suggestions about how you can support a family going through a miscarriage or loss of a baby or child.  


(*Disclaimer=  Grief is different in every situation and for every person.  There is no use comparing your grief to anyone else's.  The  death of a spouse, a parent, or an eight year old child is going to be different for everyone.  This is a contest that no one wants to win.  Hell, this is a contest no one even wants to enter.)



DOMESTIC ENEMY #1- RADIO SILENCE
Before this I did not know that babies could die.  I mean, I knew, but that didn't happen in the 21st century in one of the most advanced countries in the world.  That only happened in "The Oregon Trail" computer game when you got diphtheria, right??? BABIES DON'T DIE ANYMORE, RIGHT?  Unfortunately they do.  
When I was in the hospital we were showered with love, prayers, food, gifts, phone calls, flowers... you name it.  This continued after we lost Therese and I was still pregnant with Amelia.  There was so much hope.  So much love.  So many prayers.  So much... food.  I would open my front door and find whole dinners on my porch. It was amazing and I felt incredibly supported.


Then Amelia passed away and my babies were both stillborn.  You could have heard crickets.  (Except for my immediate family and friends. They planned the girls' funeral, gave us their own burial plots, lent us places to stay when we just could not face going home, and so much more.)  But other people, like co-workers and acquaintances, had NO idea what to say or do.  They were absolutely horrified by what had happened to us.  I have come to realize that they too were shocked by the reality that babies sometimes die.  They were afraid that they were going to cry and upset me.  Well guess what? I had been crying for weeks and I didn't think I would ever stop.  I know it is awkward and so hard to witness, but just be with us.  Sit with us.  Let us babble our hurt to you.  It helps.  It is the only thing that helps sometimes.


DOMESTIC ENEMY NUMBER 2:  THE TIMELINE

There is no straightforward path through grief.  I can be okay for weeks at a time and then I hear about a friend of a friend who is pregnant with twins.  I feel like I've been punched in the gut and start a downward spiral.

When I was discharged from UCSF for the final time a social worker met with me and explained that the hospital would be following up with me for a year.  I laughed in her face and told her that I didn't think it was humanly possible to do this for a year.  She looked at me with the saddest, most understanding eyes and said, "I know. Maternal grief is different. You will need help working through it."


Well, it has almost been a year and I am starting to get the "Aren't you over that yet?"  Like talking about my babies is starting to become inconvenient.  Let me tell you, it is never over.  Never.  There are times when I feel like I have shattered into a thousand pieces and I will never be whole again.  I am missing an Amelia and Therese shaped space in my soul.  I wonder what they would look like.  I think about how old they would be.  I wonder what their personalities would have been like.  There are moments  when the only peace I can find is at their little grave. I miss them with a fierceness that takes my breath away and makes my chest ache.

P.S. Also, please stop asking when I'm going to have another baby.  See above.


DOMESTIC ENEMY #3: ANNIVERSARIES

Any anniversary that has to do with my babies is hard.  The anniversary of the date I found out I was pregnant.  The date I found out I was carrying twins, the date I went into the hospital... this list has many dates on it. (The 9th of every month always seems to sneak up and kick my hiney… Every. Dang. Time.)  If I am spacey, or pissy, or weepy please be patient.  Ask me what I'm thinking.  Let me share a few of my thoughts with you.  Just be there for me. My friends dragged me around invited me everywhere with them when I was having a hard time.  They were all, “If you spend any more time alone we will not be able to vouch for your sanity.  You are coming with us and you are going to enjoy it. Now get in the damn car.  You’re welcome.” (I’m looking at you, Elise.)

(*Pro Tip- This is what real friends looks like.)


DOMESTIC ENEMY #4: OURSELVES

Another super fun side effect that comes and goes with my ups and downs is spaciness.  (Dude, I am not making this up.)  There are times when I amaze myself with my blondness.  This happens because any and all energy or brain power I possess is being used to deal with what has happened and the cluster that has followed.  Yes, I am slow.  Yes, I do realize that I am being slow, thank you so much for giving into the urge to point it out. And, no, there is not a blessed thing I can do  about it.  I just wait for bedtime, collapse, and pray that my brain will shut the hell up long enough for me to fall asleep.  Because, after all, tomorrow is... will be… a better?... dammmmit... different... day... Or something like that.  I really can't remember right now. Ask Scarlet.  


This leads me to my next point…


DOMESTIC ENEMY #5- WHEN WE LOSE IT

We will lose our schmidt at some point(s), and we would really appreciate it if you cut us some slack.

Case in point: This last weekend was a celebration of our family's September birthdays, including mine.  My baby Therese passed away hours after my birthday last year.  Her death marked the beginning of the end of my pregnancy.   I had been dreading my birthday for 364 days because I knew it was going to suuuuuck.  But even I was surprised at how spectacularly I went down in flames at my own damn birthday party.  
Story Time. I knew it was going to be rough so I took some of the anti-anxiety medication that I had been given after the twins' delivery.  Evidently that stuff is potent because I went to the party and left my filter at home.  I (allegedly) told some family members all about themselves.  I cringe when someone brings up that night.  Luckily I have an understanding family with a wicked sense of humor. (I am told that I was hilarious. I wouldn't know. It's all a bit fuzzy.)

So, here is the list of things that you can do to help a mom grieving the loss of a little:

* Be there.  People seem to want to respect your space and not intrude. This is what I came up with: If you changed our diapers, cheered at our graduation, danced at our wedding, or partied at our house please reach out.  If you celebrated with us during the good times please support us during the bad times. Send a note or an email.  Visit or call. You don't have to know what to say ahead of time.  Don't worry about saying or doing the wrong thing.  Just be there for us.  Sit and cry with us.  Grief is debilitating and isolating.  Your family, your friends, and your faith are the only things that can counter it.


* Let us talk about our children who have passed away.  We love hearing and saying their names.  It is our way of honoring them. This is one of the few things we can do for them now.


* Cut us some slack.  I am writing this at 2:42 am on a Tuesday  Wednesday morning.  When I am having a hard time sleep is not my friend.  I toss and turn in bed for hours.  I relive what happened.  I cry. I rock back and forth with grief and anxiety.  Days after nights like tonight are not pretty.  (Neither am I.)  Be kind.



What does this look like a year later?  Well, this has rocked me to my core.  I no longer have a comfort zone because the worst thing in the world has happened to me.  And if that can happen, then all bad things are possible.  Hello anxiety! To counter this I have had a crap-ton quite a bit of therapy.  I am blessed with good friends, a crazy supportive family, an amazing husband, and two munchkins who give sticky kisses and think that I am the best thing ever.  I can finally see the end of this spiral that has derailed my life for the past year.  Yes, I am still so sad and angry about what happened.  I miss my babies something fierce.  I think about them dozens of times a day.  I also have hope and faith that a.) I will see them again and b.) I have a lot of living left to do. I can help people learn about maternal grief and TTTS.  Also, my husband and I happen to make beautiful babies and I want more.


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I would like to acknowledge and thank some of the people who supported and carried us through this time:


To Mommyland: Thank you for listening. You are a ridiculously funny group of women who tell it like it is. I have spent quite a few of my sleepless nights reading your brilliance. It is an honor to share my story because I know that you will learn from my experience and use it to help each other. And that is just awesome.


To the doctors, nurses, therapists, orderlies, and support staff in the hospital: You knelt on the floor besides us as we wept bitter tears and you gave my girls and me girls the best care possible. I will be indebted forever to you for your knowledge, skill, and compassion; especially Michelle, Dr. Feldstein, Dr. Bianco, Dr. Horn, Dr. Obedin-Maliver, and most especially Dr. Rand.


To Father Paul and Father Hogan: Thank you for your counsel and comfort and for baptizing and burying my girls.

To my mother in law, who never even asked if we needed help.  She just showed up and took my two children for the better part of six weeks.

To friends who made the aforementioned dinners, sent flowers, called, and everything else: You have made me feel loved and cherished. You rock.

To Papa, Col, Monica, Aunty Puppy, Aunty Sue, Gramma, Grammy, Anti, Teri, Kristina, and Anna:  You are my tribe and are an amazing group of women. (You too, Papa)  Thank you for always being there for me.  Always.

To Elise: I love navigating the crazy road of motherhood with you in the seat beside me.  You are one badass mama and it is an honor to be your partner in crime.


To Mom & Beezie:  (Who drove an hour each way to spend every damn day in the hospital with me. The whole day.  And always brought food.) I have no words.  You have pulled me kicking and screaming through this past year of my Calvary.  I don't deserve you but I'm keeping you anyways.  I love you.


To my husband, my  Energizer Bunny & my Diva Buddha Baby- You have been my reason to live.


And to Therese and Amelia:  It will be the most beautiful moment of my existence when I am able to hold you in my arms and kiss your faces.  Until I see you again, Mama loves you.  (P.S. Sorry about your initials... T&A... Really?  Cracks me up.)


More about TTTS

* If you are pregnant with twins, find out immediately if you are carrying identical or fraternal twins.  If fraternal, breathe easy, you are cool.  If you are carrying identical twins, find out as soon as you can if they share a placenta (monochorionic) or if they each have their own placenta (dichorionic).  TTTS only happens in monochorionic pregnancies.  EARLY INTERVENTION IS CRITICAL. This is a rare but deadly pregnancy complication and your OB may not be aware of it. (Unfortunately mine wasn't.) Educate yourself and be an advocate for your babies.  


(c)Herding Turtles 2009 - 2013

35 comments:

  1. <3 Much love and thank you so much for sharing this.

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    1. My daughter was stillborn full term due to her umbilical cord wrapping around her neck. Posts and stories like these are often shared in the loss community as a small "victory march" - SOMEONE *DOES* CARE! And while I love the empowerment in the community that comes with the support, what I love even more is....Spreading the message outside the community of the bereaved.
      True bravery lies there, opening up this subject that people find so hurtful and uncomfortable that they just want to turn their heads and pray that it doesn't happen to them (or thank the stars that it didn't).
      The true superstars, aside from grieving parents themselves for all they endure, are the ones - the other 75%- not affected that still want to listen, want to care, want to have the hard discussions, and want to change things.
      Again, as above, many kudos, much love, and many thanks for sharing this on an open parenting blog.

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  2. As a mother who lost her 9 month son just over a year ago, I have many of the same feelings. I would recommend looking into a nonprofit called Molly Bears. I am hopeful that my bear can bring me some peace and comfort when he arrives.

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    1. Yes, Molly Bears is fantastic! I got one for our son who was stillborn and it is wonderful.

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  3. Yes, yes and yes. Thank you for this!

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  4. beautifully written. so thankful to you for sharing your story. blessings to your and your family - especially your sweet T and A! ;o)

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  5. Thank you so much for sharing your story. We've just had multiple miscarriages, but I would say these same things to anyone, especially about not remaining silent. Just at least express condolences, that's sometimes enough. I am so sorry you lost your girls. I wish you all the best in the future.

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  6. You are amazing. Thank you so much for sharing, it was helpful to me (my friends recently lost their 9 month old) and I know it will be helpful to others. Sending you lots of love!

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  7. This is excellent. Thanks so much for writing this. We lost our oldest daughter to a car accident when she was 5... nearly 10 years ago now. All of this is still completely relevant -- it doesn't matter how long ago the loss was.

    Thinking of you, your family and your sweet girls.

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  8. :'( <3 there are no words to comfort you in your loss.. but know that you are not alone <3

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  9. Amen! Amen! You have captured so honestly what my daughter tells me she experiences in the 18 months since her 6 1/2 month old son died from SIDS. Thank you for having the strength to write this post. My prayers are with you as you navigate your grief journey.

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  10. as a mom of twins who had lots of scares while pregnant (but all turned out ok and i have some crazy wonderful fraternal 11 yr old twins --- i cannot even begin to imagine your pain... much love and prayers for you & your family! i am so glad you have their support and are educating people about TTTS... you rock!

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  11. Thank you for writing exactly how i feel but could not put into words. You explained it perfectly.

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  12. My husband and I lost our newborn daughter 12 years ago. This post was beautifully written and absolutely spot-on. I can honestly tell you that you're right- you never get over it. Never. But you learn to live with it. The anniversaries always suck, but they begin to suck less over time. I still think about my baby every day, and I don't expect that to ever stop. You and your family are in my prayers.

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  13. Hi! *waving* dead baby momma here too. My twin boys died and at two different times too - a month apart. Thanks for this. They would have started kindergarten this year. Wish i could say it gets better but really it only hurts less. I have accepted the 2 scars on my heart and wear them proudly. I struggle but I am grateful for Owen and Joshua.

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  14. This can be exactly what it's like. God bless you, and thank you so much for sharing. No grief is the same, as you said, but these are the things many of us feel and need in the aftermath. Thank you, RFML, for posting.

    My twin boys were born at 28 weeks, and my smaller son died six days later (more here: http://annaclairevollers.com/2013/08/09/im-a-preemie-mom/). It's been 3 years now. Anniversaries and random days are still hard sometimes. You will never, ever "get over" the death of a child (as if you'd want to) but you will heal and you will learn to live with it, like you shared. I loved your line: "Your family, your friends, and your faith are the only things that can counter it." Truth.

    The most helpful advice I got was from a friend who'd lost her mom: eventually there will be good days, and eventually the good days will start to outnumber the bad. And it's true :)

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  15. Thank you for sharing your heart. I too lost my baby. He was diagnosed with a fatal condition. I carried him for 35 weeks and then on the night of my 30th birthday my water broke. Liam Anthony lived for 1 hour and 7 minutes. I feel you. My thoughts and prayers. I imagine all of our babies playing together in Heaven.

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  16. Beautifully written experience that will help many people who are unsure of the right words or actions when the loss of a loved one occurs. You have honored your twin girls by sharing your knowledge of Twin to Twin Transfusion Syndrome.

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  17. Thank you strong, brave, beautiful mama. Thank you.

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  18. You really should share this on www.stillbirthday.com others will be blessed by this AND you will feel validated. Bless you and your twin angels. <3

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  19. Thank you for sharing your words, thoughts, and heart. You are Spot On!! My son Josseph lived 71 minutes. He was born Oct. 2,2012. He had Potters Syndrome. 100% fatal...until yesterday I read a Fox News Story about the first ever baby surviving. A hot mess doesn't begin to describe my insides. As his one year anniversary rapidly approaches I find myself lost at sea again, just when I thought my anchor was gaining strength. We will weather this storm, this I know because our earthly babies (9,7,5 &3 are mine) need us. Stay strong and never lose your beautiful sense of humor.

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  20. I honestly don't know where to start. My cousin, who I adore, lost her beloved boy when he was three years old. That was my first glimpse into the deep, dark crevasse that is a mother's grief. My sister lost her husband to suicide last December. I went through an excruciating divorce last year. These things are not the same. So, SO not the same- but there was a common thread as I look back. There is a big difference between loving someone, and loving someone well. I have learned not to presume I know what I would want in a given situation. I ask. I ask,"What can I do?" and "What do you need?" There's no wrong answer- because everyone's path is different, and grief is a Sneaky Bitch.

    Jack. Therese. Amelia. Joseph. Liam. Owen. Joshua. Molly. Our Adam. Say their names out loud, like a prayer.

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  21. This post made me cry. I recently had a surprise pregnancy that I lost very early. Followed by a cyst that I just have to "wait and see" how it ends up. Emotionally I am all over the place, trying not to think about what has been lost or dates that are related. Topped with guilt that it may have been my fault (I had no idea I was pregnant) and no one to really talk to about it.

    It feels like most people seem to be of the mindset that as it was a) unplanned and b) lost so soon after finding out that I really shouldn't be grieving.

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  22. It's 8am, my house is quiet & tears are streaming down my face! Thank you for sharing your heart with us:) ❤

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  23. Thank you for sharing your story. I am so sorry for your loss and amazed by your strength.

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  24. From someone who gave birth to a stillborn at 24 weeks, this hit very close to home for me. Thank you for sharing but I couldn't read the whole post. I'm apparently not there yet in the grieving process, even 1.5 years later.

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  25. My name is Theresa and I wrote this post. I have ugly cried reading your comments. Thank you so much for reading my words. Thank you for sharing the stories of your angel babies. I am so grateful that I can use my suffering to help others who are also suffering. I have found my purpose. I wrote Lydia and told her that in publishing this a huge weight has been lifted off of my chest. This is continuing with every comment I read. To quote Momastery: Life is brutiful. Helping each other through the brutal times is beautiful. I believe that this is where we find the meaning of life.
    I cherish the idea that saying the names of our children becomes a prayer: Jack, Amelia, Therese, Joseph, Liam, Owen, Joshua, Adam, all the babies who don't have names, and all the other babies and children who are waiting for us. You are loved and missed. Fly high.

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    1. Thank you for writing this. One of my very best friends lost one of her twin daughters and her husband within 6 months of each other. I so appreciate your insight... sometimes I am paralyzed into inaction by the not knowing how to be there for her, by imagining her grief and then I just lose my schmidt. Then I feel like a huge schmuck for crying about HER grief and I just don't know what to do. I am so, so sorry for your loss. I hope and pray that when you and your hubby are ready you have more beautiful babies.

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  26. Theresa, this is beautiful, and terrible, and enlightening. Thank you for sharing your experience with us, and for letting us know your angel babies. Grief is like the wind. We can't control it, but with the shelter of family and friends, we can take refuge for a bit.

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  27. I lost my twins boys Silas & Declan to severe TTTS on March 31st of this year. Their due date was August 29 (also my dad's birthday) & I cried for weeks leading up to it, but I was surprisingly calm when the day arrived, possibly because I was busy with my 2 year old, but who knows. I have bad days & good days, but lately the good number more than the bad. They will always be in my heart & I will never forget my twin angels

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  28. Thank you for sharing this. I have an 18 y/o son and a set of twin girls (8 months yesterday). I lost three babies through miscarriages, between my son and my girls. I look forward to seeing them again one day, and that my beloved grandmother is caring for them in heaven - that's what got me through those losses. I very, very much love my living children and am so very grateful for them, but I do grieve and miss those babies. It is easier now, but certain times of the year are still hard.

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  29. Oh how I wish I had a copy of this to share with everyone I know after our son, Jonathan, died one hour after his birth on Aug. 21, 2009. You nailed it! Thank you on behalf of grieving moms. Maternal grief is indeed different. Thank you for sharing your heart, your humor, and some practical ways friends, family and acquaintances can support those who live through their worst nightmare and keep waking up.

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  30. Wow. This post is spot on. Thank you so much for writing it. I am so very, very sorry for all of the losses mentioned here. As we deal with the 2nd "crapiversary" of the loss of our sweet Jack, it is good to know that this post will help others better understand and help us to understand others. xoxoxo

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  31. Thank you for sharing! I am sorry for your losses and I understand the hole that the loss of a child leaves in your heart. My twins were diagnosed with TTTS at 25 weeks gestation and were delivered at 26 weeks due to Isaiah developing hydrops. He died at birth and his twin, Caleb, fought for his life in the NICU for 4 months before coming home. Caleb is now 4 years old and will always have some symptoms from his early birth, but I am so thankful that he is alive and I can hug him every day! I still think about Isaiah and what it would be like to have two identical 4 year olds running around but the grief has subsided to more of a dull ache instead of a massive gaping hole in my heart..

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  32. Thanks so much for this. My sister and I were pregnant at the same time with our second babies, both boys. My son was born 3 months before hers, her son passed away 3 days after he was born, totally unexpectedly. It has been SO hard. It's helpful to know what might be helpful and just to understand her grief. Having my own newborn son has certainly made things more complicated. Again, thanks for posting

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