The Madness Between

Category: Uncategorized

• Four Years Later

  Posted at 6:12 pm by saramarieobrien, on December 11, 2018

  

  Yesterday at my weekly therapy session, I mentioned that today is the four year anniversary of Oliver passing away and Dr. N asked how I felt about it.  I answered quickly that I had been feeling somewhat numb lately and that it had been hard for me to muster up any emotion.  Yet by the time I finished that sentence my eyes had welled up with tears and a pit in my stomach had formed.  Either my therapist has some magical powers over my emotions or I was stuffing them away and purposefully not giving myself space to feel.  After I admitted that I give myself an average of 20 seconds to ‘check in’ daily and see where my head is at – we confirmed my fake ‘numb’ was due to the latter.   We spent the hour bringing up some painful memories and she encouraged me to sit, feel, write, and remember.  She also suggested I re-read my blog, from beginning to end, from a view up above.  To read it with compassion and see what emotions evoke from re-reading my own story.  I did it last night in bed – which was NOT a good idea for someone who already struggles to fall asleep easily – but it evoked plenty of emotions.  Good, bad, insightful, ugly.

  Re-reading the blogs from the first anniversaries, or the re-telling of the most difficult days is incredibly hard.  I can instantly feel what I was feeling in that moment but at the same time I’m thankful that it’s not my constant anymore.  Grief is such a journey and the stages of it ebb and flow.  I am no longer in shock or survival mode – just making it through each hour.  I more so tend to bounce back and forth between denial, depression, and acceptance.  As the years pass, I move closer to acceptance.. which is actually one of the stages I was scared of initially.   I used to believe that acceptance = moving on and forgetting.  What I now know, I will never forget.  But I have grown in my grief and I have learned a lot along the way.

  In honor of my two boys – who both passed away this week – four years ago – I am using this space today to memorialize what I’ve learned… because of them and for them.

  I’ve learned that grief BLOWS.  It comes with so many stages, feelings, expectations, false assumptions, guilt, and disappointment.  When you think you’re coming out on the other side of it – you can get pushed back down.  I don’t cry myself to sleep nightly anymore.  I no longer see a newborn baby or hear of a mom pregnant with twins (I haven’t quite overcome a triplet announcement) and want to dig myself into a hole.  I am generally happy day to day and I have re-discovered the joy in life’s little moments.  But at the same time, I will find myself wide awake in the middle of the night wondering how I slept for 3.5 weeks in that same bed, with one baby kicking in my belly and two babies that had already died.  I lose my breath, I panic, I want to throw up.  I catch myself looking at Tommy and imagining two more versions of him and the sadness can take over my entire body.  I question how much I can share about my boys four years later and wonder how it’ll be received.  I  had a close family member recently tell me it’s time to ‘move on and let it all go’ – that its been ‘long enough’.  Experts say there is no timeline to grief and while I can convince myself of that majority of the time – when the waves crash, they crash hard and I often wonder how long they’ll continue to roll in and whether I’ll start losing my support system.  I’ve learned that I don’t know the answer to how grief will continue in my life, but that is okay.

  I’ve learned that using my pain for good – is good for me.  I donate one photography session a month for a family experiencing a difficult time in their life.  Whether it’s baby loss, pregnancy after loss, diagnosis of a terminal illness, honoring loved ones who have passed, families battling cancer – it’s a way I can give someone the gift of lifelong memories.  Something tangible they can hold onto and smile at years later.  I have helped gather wedding dresses for donation to the Angel Baby’s program.  I share coffee and conversations with other women who are experiencing loss or going through infertility treatments.  Most recently, I spent an afternoon with the directors of a local hospital and talked about how they can improve their bereavement program.  I shared some of the support we received when we were losing our boys and how amazing our hospital handled the delivery.  Never in a million years did I think I’d have the courage to sit in front of these women and share my experience in such detail.  I cried, they cried, but I left feeling like I made a difference.  As Tommy gets older, I don’t have as many opportunities to share my triplets’ story so being able to ‘give back’ is my way of keep their spirit alive in my own heart.  And I vow to continue looking for opportunities for as long as I live.

  I’ve learned that my faith is rocked to the core.  When I picture Ollie and Grey, I picture them looking very similar to Tommy and living in the most beautiful Heaven.  I picture all of our loved ones who have passed, spending time with them and filling my spot until I can be there myself.  I believe in God, I believe in Heaven, I believe in having faith.  But I have taken a 4 year hiatus from having a strong spiritual relationship.  Last week, Riley had her first reconciliation.  We spent a few days prepping her for it and talking about what the sacrament means.  Mac was raised with a strong Catholic foundation and was able to share memories of his first reconciliation and how he has always enjoyed ‘ridding away sins’.  I was raised with a Presbyterian mom and a Catholic dad – and while we prayed at dinner time and before bed – we didn’t go to church regularly and I definitely wasn’t raised with an overpowering pillar of faith to lean on.  As an adult I went through RCIA and received my communion and confirmation – and though I now feel more ‘legit’, I still feel like a phony when Riley’s asking me specific questions and I turn to google for the answer.  Fast forward to her night of reconciliation and the recommendation was for the parents to also make confession as a way to set a good example for our children.  Riley had her moment and came out skipping because I’m pretty sure she used her time with the priest to brag about how awesome she is.  Mac went next and walked out saying he felt lighter.  I completely chickened out and lied to Riley saying “only one parent has to go – there’s a lot of people here and we don’t want to hold up the line”.  What was really going through my head was that I didn’t know how I was going to sit face to face with a member of the church and confess that I blame God for so many things.  I blame Him for taking away our sons.  I blame Him for my pain.  I blame Him for my inability to create the family I dreamed of.   And if I instead took the easy way out and just confessed to a random sin – it felt worse than not partaking at all.  I left church that night proud of my daughter but so disappointed in myself.  I know deep down it’s not God’s plan (shout out to Drake) to hurt me, to take my babies away, to prevent me from being the mother I deserve to be.  But because I don’t understand the reason for it all and I’ve worked so freaking hard to stop blaming myself – I don’t know who else to blame.  I don’t want this to be the way.  I don’t want to carry the weight of anger.  I want to have a solid relationship with God and be able to rely on my faith when I don’t have the answers.  But I have to first work through forgiveness and that is a big one.  Do they make spiritual therapists??

  I have learned that loss recks havoc on a marriage but can also bring out the absolute best.  Mac and I have endured a lot the past 6 years of marriage.  We have handled grief differently and not always in sync.  We have spent hours in marital therapy digging through our past and how to make it work for our future.  We have gone to bed angry, said hurtful things, and put unjust blame on one another.  We are far from perfect and I can guarantee we have plenty more mountains to climb.  But we have made it through the worst (hopefully).  Mac has learned about depression, PTSD, anxiety and how to handle me when I’m down.  I have learned how he grieves, how he strives for a plan of action, how he takes the reigns when I’m unable.  And I have seen a side of him I could not have dreamed of.  On Sunday night, before he had to leave town for the week, he took Tommy to the cemetery to pay a visit.  When they came home, Tommy came running up to me and said “me and dad played christmas music for Ollie and Grey and my brothers LOVED it”.  This morning I woke up to a card by the coffee machine that had the kindest message in it..

  “there isn’t a single person in the world that can fully understand how you feel today, what you went through or what you’ve done to get yourself and our family where we are today.  I love you so much and although I don’t always express it, I am so proud / thankful of the work you put into yourself and our kids”

  I am married to a man who gets me and appreciates me.  And although I would give everything in my soul to not have ventured down the road we did, I truly believe because of Ollie and Grey – I have a better life partner.

  I have learned how to put one foot in front of the other in search for answers and resolution.   My closest family and friends know I am in physical pain daily.  Ever since I delivered the triplets, I haven’t had much relief in terms of abdominal pain, backaches, etc.  I have put it off for years because I didn’t want to venture back into familiar doctors offices and potentially hear bad news.  I thought working out, eating healthier, testing out oils and herbs would make a difference but I was just buying time.  A couple months ago I finally starting making phone calls and doctors appointments and conquered a few fears.  The worst of them being a scary procedure at the very same hospital I delivered the triplets at.  I cried throughout the whole thing but silently talked to my boys in hopes they were with me and could give me some strength to just get through the freakin thing without having a full blown panic attack.  Mac and I met with my surgeon and talked about what our future holds – the likelihood of ever venturing down the path of IVF again vs. having a highly recommended hysterectomy.  We talked about the triplets, the outcome, the trauma my body has endured.  Conversations I have avoided for so long – ones that weren’t any easier than I expected – plenty of PTSD triggers.  But I made a step forward and I’ve learned there is a some relief in doing so.

  Lastly, I have learned how lucky I am to be a mom.  I knew this the second my journey to motherhood began but I feel it now more than ever.  I don’t take a moment for granted with the two children I can mother here on earth.  They are my reason for being and they are the root of my happiness.  Riley is the most empathetic, kind, funny, creative and caring seven year old I know (biased) and Tommy is just… absolutely one of a kind.  My dad said it best when he texted me yesterday and said he was thinking about how special Tommy is and that it’s because of two angels that made sure he had a big life to live here.

  I have so much left to learn about myself, about loss, about life but I’m making a dent in it.  I miss the ‘what could of been’ and ‘what should of been’ daily.  I dream of what our house would be like if all my children lived in it.  On days like today and weeks like this one, I feel heavy with sadness.  But I hope I am making my boys proud and I hope when I reunite with them someday, they know I’ve tried to do this ‘thing’ right.

  I love you Ollie and Grey.

   

   

   

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• Who Am I?

  Posted at 6:47 pm by saramarieobrien, on July 31, 2017

  I have neglected this blog for quite some time.  6 months to be exact.  I haven’t felt ready to write or share or reflect as I have been on an enormously challenging journey to finding myself again.  Shortly after the triplets birthday in January – my therapist asked me what I see my future looking like.  What’s on my bucket list?  What do I want to focus on this year?  What do the next 3, 5, 10, 15 years look like?  I sat there stumped as if it was the first time anyone had ever asked me the question.  My stomach instantly sank and the only truthful answer I could find was “I want to be able to feel complete.  I want to be able to know one way or other that my family is complete”.  While I assume most people fill up their bucket lists with career goals, vacation plans, adventures, and personal achievements – I could not conger up anything other than some sort of resolve with my ‘story’.   To feel some sort of peace with my past – and contentment with the future.  To stop resenting myself and my body – and to learn to love myself again. Although these are solid personal goals – I soon realized that the answer was disappointing to professional ears.  I could not think of one thing outside of ‘healing’ that I wanted to accomplish over potential decades.  I was challenged to think about who I used to be before all of this?  What were some of my passions?  Being a mother and wife is obviously top on my list – but I used to love to bake, to workout, to create and draw and paint, to spend time with friends, to read books, to self-care.  When I created this list – majority of these items were no longer a part of my life.

  For the past 6 months I have re-introduced myself to the old ‘me’ – little by little.  I bought some new watercolor paints and brushes – and created a piece of artwork for our upstairs landing.  I try to read almost every night before bed – some books mindless thrillers and others self-help.  I have built the most amazing group of friends – rid myself of any toxicity – and have found great happiness in the company of so many.  I bake weekly – and I can proudly say that both Riley and Tommy can crack an egg like a pro : )  Mac and I attend bi-weekly marital counseling to stay on task with bettering our marriage.  I have been eating healthier, making doctors appointments, tackling tough issues each week in therapy and trying to maintain strong self-awareness.  While these goals may seem easy for some – they weren’t necessarily for me and I felt a sense of achievement each time I could check off an item.

  What I struggled with the most however, was if I continue down this path of positivity and self-care – does that mean I accept losing Ollie and Grey, and forgive myself?  I never looked to the future and assumed I would spend it crying, mourning, and remaining stagnant.  I prayed for healing.  I prayed to find happiness.  But in my mind – finding happiness means moving on from grief.  How do I connect to my two boys in heaven through any avenue other than sadness and trauma?  I don’t have a single memory of them that isn’t tied to sadness and trauma.  So if I attempt to remove the sadness and trauma – and focus on happiness – how do I feel connected to them?  I’ve tried to turn this obstacle into opportunity by offering free hospital shoots for baby loss, NICU babies, and terminal illness.  I go to the cemetery several times a month and decorate my boys’ grave as if it’s their special little home away from home.  Along with falling into bed crying – I have always thought these gestures were my way of connecting with them.  Of showing my devotion and love and making their story known.  It wasn’t until I had this exact conversation with Dr. N that I realized these gestures are still connected through trauma. Photographing a stillborn as a way of connecting to my twin boys is healing – but traumatizing.  Going to the cemetery can be peaceful and beautiful – but I never leave without a complete stomachache.  I will continue doing these things for the rest of my life – but Dr. N challenged me to somehow discover a POSITIVE connection to my boys.  I didn’t think it was possible and I certainly didn’t know how.

  One of my biggest struggles throughout the years of infertility, fertility treatments, surgery, doctors appointments, and my triplet pregnancy – was my relationship with my body.  I am fortunate that in terms of clothing size and mirror reflection – I have a decent metabolism and the ability to ‘heal’ quickly.  But in terms of my emotional / mental relationship with my physical self – it’s toxic.  I am resentful at how many times it failed me and yet at the same time I worship it as the only ‘physical connection’  I have to the children that were taken from me.  Even though majority of my abdominal scars have healed – I have had a hard time wearing a bikini because I don’t want to expose the only place my boys’ hearts beat.  I have obvious issues with intimacy.  I haven’t wanted to workout and use my body for strength – because I don’t view it as strong.  And as many times as Dr. N tries to convince me otherwise – I usually sit in her office, on the couch, with my arms crossed and protecting my stomach.  She tells me to thank my body for bringing two beautiful children to this world, for enduring over 7 surgeries, for keeping me alive – yet it falls on deaf ears.  I wasn’t ready to forgive myself.

  However – in May, a group of my friends decided to join a 6 week fitness challenge at our local studio and they asked if I wanted in.  The challenge was partner based so you had accountability – and it came with a fitness plan, diet goals, and a daily point tracker.  Just the concept of this went against every grain in my body but I tend to have serious FOMO so I decided to sign up.  I had never attended a class at Rise before and to say I was intimidated was an understatement.  It had been years since I had endured any type of cardio, balance, or strength training and here I was committing to a 6 week challenge – with a full trunk full of physical / mental / emotional baggage.

  But I can now hardly even write about it without fully breaking down into tears.   I started that first class feeling resentful and annoyed that I let my friends convince me into working out when I wasn’t ready to use my body in that sense.  When we first laid on a mat to do abdominal work – I started to cry.  Not only at the shock of how weak my core was but because I was slowly using that ‘sacred space’ for a different purpose.  Yet,  I came back the next day, and the next, and the next.  The challenge is over – and I haven’t stopped attending Rise classes.  I am there 3 – 4 times a week and the days that I am not – I am craving it.  The reason isn’t because of my physical appearance or whether or not I can hold a plank.  It’s because I can’t get through a single class without my eyes welling up with tears as I have finally found my positive connection to my angel babies.  I feel their presence.  I devote each class to them.  I talk to them during the hardest interval sets and tell them I am trying to be better, stronger, and happier.  For the first time in years, I WANT to live a longer, healthier life.  I want to take care of myself and I can actually say that I am slowly forgiving my body for what it did not provide – and appreciating it for surviving the trauma.

  Ironically – one of my favorite instructors at Rise (Carin) likes to end her class with us ‘thanking our bodies’.  The first time she made the request – I felt like I was being pranked by my therapist and she had switched out the mic.  I sat there quietly as I heard everyone else around me openly thanking their bodies – but it felt too big of a statement for me.  I have since joined the masses in showing gratitude and I pray to continue down this path in hopes of making two little boys very proud.

  

   

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• The Deepest Ache

  Posted at 8:15 pm by saramarieobrien, on January 18, 2017

  Tomorrow is so close.  Too close.  I don’t know how it’s already been a year but I don’t feel anymore ready for it than I did last year.  It’s the triplets birthday… Tommy is turning two.

  I explained to my doctor yesterday that at night when I finally lay down and my mind begins to race faster than my body has – I feel my world colliding.  I have the deepest ache in my heart and my gut.  And it’s something that weekly therapy, journaling, prescription drugs, wine, exercise, meditation can’t fix.  It’s a constant ache – that I feel come and go on a daily basis – but its hurts the most on this day.  When I begin preparing the ultimate balance of sadness and joy.

  Last year was rough.  I didn’t know what I was doing.  I have taken ‘first birthdays’ for granted in the past – Riley was a healthy baby so her 1st birthday was more so a chance to throw a big bash and show her off.  I cared more about checking off the to do list – perfect cake, cute theme, plenty of booze for the adults, adorable outfit, yadda yadda.  Besides feeling emotional about how quickly time flies by – I really didn’t shed too many tears.  So then my next ‘go’ at a first birthday party was Tommys.. and I was a hot mess.  The emotions were out of control because I was celebrating just ONE one year old, instead of three.  At the same time I was overwhelmed with joy that we even had ONE baby to celebrate – that Tommy had overcome so many hurdles and was present, healthy, and happy.  I exhausted myself through therapy – learning how to cope with the day – how to balance my emotions – how to compartmentalize.  I jumped into the birthday with so many tools and tricks – that I surprised myself with the ability to survive.  We threw a big party for Tommy – we visited the cemetery – we sang to both Heaven and home – and I even conquered one of my biggest fears in tribute to my three boys and their first birthday.  I drove back to the hospital they were born and visited my team of doctors.  The only 3 people who view me as a ‘triplet mom’ even if I’m just walking around this earth with two children.  The 3 people who could recognize my babies individually via ultrasound – based on their moves, their position, their faces.  The 3 people who held my 3 sons in the flesh, who tried to save them, who cried when they couldn’t, and supported me every second of the way.  I made each doctor a jar of homemade cookies – I introduced them to Tommy for the first time in a year – and we chatted about our journey together.  They comforted me in ways I wasn’t expecting.  They told me that I am the story they talk about when they go to round tables with other physicians – when they talk about loss, high risk pregnancy, twin to twin transfusion.  They commended me on Mac’s and my ability to be kind, have a sense of humor, and trust them throughout the process.  And most importantly, they reassured me that we made all the right decisions.  That we tried our best – as parents, and as a medical team.  I hugged them each goodbye and thanked them over and over for gifting us with Tommy.

  

  That day was such a focus and goal for me – that I think it helped me get through the anniversary.  What I struggle with so much today – is not having an overwhelming goal in sight.  The reality is tomorrow when we wake up – Tommy will be two, we will spend the day celebrating the most perfect creature we know – we will go the cemetery and send our wishes to the sky -and then wait for the next year.  And the next.  And the next.  It’s our reality and our life, yet I still don’t feel like it’s mine.

  For anyone that hasn’t met Tommy – there is something so special about him.  Minus his story.  Minus how he was created.  Minus how he survived the odds.  Minus the fact that he’s a triplet.  He is just unique.  He stops people dead in their tracks when we’re shopping.  His eyes are mesmerizing and his smile is infectious.  He wakes up laughing and goes to sleep on his pillow each night with the silliest grin on his face.  He follows Riley around the house – kisses every single toy / object / stuffed animal that he accidentally drops to make sure they’re “okay” – he talks to himself and has full conversations to an empty room – and when the room is filled, he will sing Let it Go to whoever listens.  I get butterflies every time I look at him because he is perfect – and I’m finally accepting that he is ours to keep.

  I could write 20 more blog entries about Tommy and the endless reasons why we are obsessed with him.  My love for him has reached an all-time high and it’s the exact reason why his birthday is so incredibly painful for me.  I want to full heartedly celebrate him in the way I do Riley.  To devote every second of that day to just loving, honoring, remembering where he’s been and imagining where he’ll go.  I cannot fully escape the pain though and it overwhelms me.  My heart is split in two – but physically feels like it cracks in half on January 19th.

  I wrote a blog entry last year in preparation of this day.  You can read it here.  When I met with my therapist this past week and we talked about where my head is at – and she recommended I re-tell the story.  Pick two friends and tell the story from beginning to end.  Sit down with Mac and run through every detail of the day we delivered the boys.  I haven’t picked two friends, and I haven’t yet sat down with Mac.  I am literally scared.  I am scared of the images that come up.  I am scared of the feelings attached.  I am scared of it continuing to overshadow what is supposed to be such a special day tomorrow.

  Tomorrow will be two full  years since our three boys were together.  Mac and I were given a hat the day they were born – the kind that most dads wear proudly around the Mother & Child ward once they’re first child has been delivered.  I don’t even remember if Mac was given one when we had Riley… but this hat is one of our most prized possessions.  It has all three of our sons footprints on it – taken right after they were delivered.  Besides ultrasound pictures when the techs would try to get a ‘family shot’ of the triplets… this is the only physical evidence I have of my three boys together – during their few moments together on Earth.  Because shortly after they were delivered, Tommy was taken to the NICU and Oliver & Greyson were rushed off to a room – where they were bathed and kept warm (in order to hopefully prevent further deterioration).

  

  5 hours after delivery, Oliver and Greyson were wheeled into my room, in a small white basinett – wrapped in the two blue knit blankets we picked out for them.  After we had them baptized and we had the chance to hold, cry, kiss them – we said our goodbye and they were wheeled away to the funeral home director who was waiting for them downstairs.  I signed their birth and death certificates and sat with Mac in a very quiet and empty room.

  

  It wasn’t until 6pm that evening (the triplets were born at 3am) that I was wheeled down to meet Tommy.  I don’t remember anticipating what he looked like – because part of me felt it would be too hard to look at him.  Both for the reason that he would look sickly and fragile – but also because it was the most obvious reminder of his two brothers I just sent off to be cremated.  Yet – when I held him… he was the spark my heart needed.  I remember sending this picture to my dad and him replying “I’ve missed your smile”.

  

  This shit does not get easier.  But what I’m attempting to tell myself is that if I could muster up a genuine smile on the worst day of my life – I am capable of continuing to find the joy.  To celebrate what I have and what I don’t.  To pour my heart and soul into tomorrow and each year to come – in hopes that all three of my boys know how much I love them and cherish being their mom.

   

   

   

   

   

   

   

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• Buckle the f@ck up

  Posted at 2:58 am by saramarieobrien, on November 24, 2016

  “You’re on the roller coaster so buckle the f@ck up” – hands down my favorite words Dr. N has ever spoken.  I sat in her office this past weekend – with my head in a complete mess.  I explained how life feels thrown up in the air and I haven’t a clue how it will land. As expected with this time of year – sadness has crept in fast and heavy and I’ve been doing a full sprint to outrun it.  I have been overbooked with photography sessions, planning parties, doing projects around the house, filling up my calendar with everything possible that will add ‘peace and happiness’ into my life.  What I’m really doing is avoiding.  Dreading thinking about what this week represents and the painful days ahead.  Dr. N told me my homework for the next week was to give myself at LEAST 20 minutes a day to sit down and just s.t.o.p.  Think about where my head is… where my heart is.. and find my grounding.. as painful as it may be.  It’s somewhat ironic that this past Monday morning (2 days after our session) I was in the ER on IV fluids / meds for a horrible flu bug -and have been forced to do nothing but lay ever since.  And think.  Sleep.  And think.

  

  It was two years ago this week that my life was forever turned upside down.  A week that started as an appreciation of exciting milestones – maternity pictures, final touches on the triplets nursery, prepping for our last Thanksgiving as a family of 3 – and one that ended in life-altering devastation.  I spent the holiday that year, in a hospital bed, strapped to a million monitors watching my two babies lives dwindle away.

  

  

  Dr. N asked me how I’m feeling this year – with Thanksgiving coming up and the memories that have been permanently attached to it.  My answer:  ‘weird’.  Last year, I was sad but so grateful that I wasn’t spending it in the hospital and away from Riley.  I was grateful to be in my beautiful home with my husband and TWO healthy children – my dad – my sisters and brother-in-laws and nieces and nephews.  I was surrounded by all the people who know my heart and my head – and I allowed myself room to feel what I wanted and I was pleasantly surprised when my primary emotion was a happy one.  I felt sad remembering what I had endured the year prior – but again, mostly gratitude for not having to experience it again that day.  This year is totally different.  I wouldn’t trade being home with my family for the world – but I am finding myself desperate to be back in that hospital bed just for even a minute and feel my sons move.   Maybe if I went back in time – there would be a new direction, a new way to save them, new medicine, new doctors, new opinions.  And even if not – maybe I could just hold my belly and tell them over and over how much I love them – in case I didn’t say it enough.  And that’s why I summed up all those feelings into one word:  weird.  I can’t believe I would ever wish that moment back into my life – yet the further I get from it, the more I want it back.  I know if I dig deeper and look at it from my therapist’s chair – it just means I am desperate for connection back to my two boys.  To feel them – spiritually, physically, literally.  But I try – I look for signs.  I pray to them.  I talk to them.  I celebrate their lives.  I decorate their graves.  I dream of them.  I sleep with the very blankets I held them in.  But nothing compares to feeling their life inside of me.  Nothing.

  My memories of Thanksgiving week two years ago are so vivid and yet so random.  I can remember the sound of my hospital door opening at all hours of the night with the new on duty nurse or resident coming in to check on my babies.  I remember the look on Mac’s face as the priest blessed my belly the morning of Thanksgiving – preparing our babies for eternal life.   I remember the brave face I had to put on every time I knew Riley would be walking in through the door.  I remember being wheeled into the hospital from the heartbreaking doctors appointment when we found out our boys were dying – and panicking to dial Dr. N.  We reminisced about this phone call during our session on Saturday because she said she can still remember exactly where she was at when she answered that call.  I remember reciting an email she sent me (copied below) over and over and over to my stomach in hopes that I was doing the right thing for babies that would soon be leaving me.

  

  “Oh sweet Sara.  I am so sorry for all the painful news you are having to bear.  It truly is too much for one soul to take in.  It only makes sense that you would be feeling so overwhelmed with the prognosis for your precious twins.  I wish I could jet across the miles and give you a giant hug and cry with you.  There is nothing that will change this pain, only the support of those around you to help you endure it.

  I know the most impossible task is going to be saying good-bye to your twins.  But, I strongly encourage you and Mac to try and do so.  Take time alone to talk to the twins, comfort them as only parents can do in their last few days.  There’s so much they need to know about their short lives.  And there is so much they need to know about how much their mommy and daddy loved and wanted them desperately. 

  Here are just a few things I hope you will share with them:

  – how hard you fought to get them here, the surgeries, the IVF cycle, and how hard you know they fought to be here… you all showed those around you (including me) what true strength is.

   – how scared you were to find out you were having them…and the immense courage you showed in opening your hearts and minds to them.

  – how you fought to find the perfect doctor for them, after a few shall we say duds.

  – the thrill and excitement you felt when you saw their tiny heartbeats. how real the whole thing became for you. 

  -how you began to make life decisions to support their lives… the minivan, putting a pause on your career, getting things in three, Mac’s career

  – the ups and downs of their appointments, the fear and hope you had to simultaneously hold for each new appointment

  -the immense grief you feel at not being able to hold them, nurture them, and raise them. 

  -the hope you hold for seeing them again in heaven/afterlife

  Perhaps you and Mac could sit and recall to the twins some of these (and other) milestones in their short lives that you want them to know?  I know each loss is different, but for me, one of the hardest things was not being able to say good-bye before our baby passed.  I hope you are able to find strength to do so… I think it will give you peace later on. 

  Sara, your grief will come in waves and when it does it is likely to be very intense.  I want you to command yourself during those times to “just breathe”… remind yourself that the pain is intense and overwhelming, but it won’t always feel like that.  You will get through this, and you will come out with more compassion and strength than you ever thought possible.  I also want you to give yourself time to just zone out and not obsess.  Try to postpone thinking about things for an hour or even a half-an-hour.  Also, remind yourself of what the priorities are to focus on right now… your health and the health of baby C.  Let all other worries wait… you don’t have to figure out everything right now.  Just focus on the priorites. 

  If friends/family ask you what they can do… here are a few suggestions:

  1. Set up a schedule for Riley to regularly visit you. 

  2. Bring you magazines, movies, games or other distractions

  3. Download a relaxation app on your Iphone and listen to often and definitely before bed

  4. Ask someone to go to your house and box up baby stuff so you don’t have to deal with that when you get home.

  I remember forwarding that email to my sisters and close family – and it was helpful for them to understand some of the things my head was trying to wrap around. I still can’t read it – to this day – without balling.  So it’s insane to me that I want to go back in time and sit in this moment – but I really do.  I am silently (and I guess publicly) begging for it back.

  But I’m no idiot and I know life must move forward – as it has the past two years.  I have worked effortlessly to add good into my life and I’m hopeful that when I wake up tomorrow, my mind can focus on what I am thankful for.  Because I do have a lot – some of the very things people around me are praying for.  A family – a home – two healthy children – an amazing, fulfilling career – and some of the best friends a person could find.  Those are the things that get me out of bed each day – and allow me to march forward, wipe away the tears, and be a better ‘me’.  Lastly – Dr. N reminded me that my life, though more painful, is fuller having gone through my experience so I will end this with my thanksgiving to two deserving angels.  I am thankful today and everyday that I was chosen to be their mom.  They have given me a better perspective on life and allowed me to have deeper relationships, deeper love, and deeper understanding.  I am thankful.  I am grateful.

  And I’m buckled the f@ck up : )

   

   

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• How to heal a heart

  Posted at 8:52 pm by saramarieobrien, on October 14, 2016

  I’ve been wanting to write this post for a long time now.  It’s such an important part of my journey and one I want to never ever forget.. so this blog serves as the perfect method for memorializing these memories.  And oddly enough – two very special people (unbeknownst to them) encouraged me to finally sit down and write this week.

  I have been asked consistently for the past 4 years – “How can I help?  What can I do?  Do you need anything?”.  I never once had an answer to those questions.  Not when I was going through IVF and suffering the pain of unsuccessful cycles or miscarriages.  Not when I was recovering from multiple surgeries.  Not when I was on bed rest – at home or in the hospital.  Not when we found out we were losing our twins.  Not when our twins passed away.  Not even today – almost 2 years later.  I see a therapist weekly to try to figure out what I need – so it’s been sometimes impossible to offer suggestions to others.

  But – over the past 4 years – my family and friends, and sometimes even strangers – have given me exactly what I needed, and more.   We are continually surprised by the outpour of love and support, the thoughtful and the most simplistic ways to show they care.  Gestures that I am forever grateful for – ones that seems to stitch up the hole in my heart, little by little.

  These are the moments I don’t ever want to forget – but there have been so many, I fear that I will.  So – I’m making a list of ways that we have been lifted up.  This list can serve as a reminder for me of all the people who love and care for us – or maybe it can help someone else when they’re at a loss for what to do when someone’s in need.

  Journeying Through IVF:

  Going through any type of fertility treatment is physically, emotionally, mentally and financially exhausting.  It’s isolating because many people do not understand the extent to what it involves.  Sometimes not even your spouse because women bear the majority of the brunt in this area.  But there are ways to show your support, concern, and love for someone so desperate to create a family of their own:

  • Ask how they’re doing and how they’re feeling.  Study up on the process and the terminology that’s used with fertility treatments.  Ask if the person would like you to come with for a consultation, a blood draw, a monitoring appointment.  Ask if they need help with childcare if they have children already.  IVF cycles require sometimes DAILY appointments – and a lot of clinics don’t let children attend these appointments due the sensitive nature / high emotions in the waiting room.  Give your loved one a space to talk to you about their feelings and find out how you can help make their day-to-day easier.
  • Show support.  One of the my favorite things I ever received during my cycles was a care package from my sister Steph with encouraging words / gifts.  Her card told me how proud she was of me for chasing my dream and for my commitment to build a family.  This was a rare sentiment…  most of my family and friends were afraid to talk to me about the process or just felt sorry for me.  While I accepted the sympathy / empathy – a vote of confidence felt really really good.
  • 
  • Pray for them.  I’ve had family members send me all different types of rosary beads, bracelets, Patron Saint cards, or just simple texts telling me that they prayed for me during mass.  My faith has been incredibly rocky over the years – so it felt like a relief to know others were praying for me when I couldn’t bring myself to.
  • Spend time together and DISTRACT them with fun, positive things.  When you’re going through a cycle – you usually have 1 – 2 days of recovery from an embryo retrieval and 1 – 2 days of bed rest following the transfer.  Then you have a painfully long 10 days of waiting to find out if you’re pregnant or not.  Ask anyone who’s been through fertility treatment and you’ll hear right away that those 10 days are the hardest of the entire process.  So – go visit your family / friend when they’re in recovery or on bed rest.  Bring over a funny movie and have a girls’ night.  Make them dinner – ask to go on a walk – drop off their favorite treat – text them some funny (not baby-related) memes.  Do whatever you can to keep their brain in a happy place and not focused on the stress of their cycles.  Trust me – it helps.

  Home Bed Rest:

  Long before we found out our twins were sick – we were prepared to be on bed rest.  With a triplet pregnancy (even sometimes a twin pregnancy) – bed rest is pretty common.  It prevents early labor, can help with pain, and in my case was necessary to keep my babies growing and thriving.  Until I learned that our boys were dying – bed rest was one of my scariest stages.  I have always been borderline hyper-active and try to cram in as many activities into one day as possible.  I couldn’t stand the thought of changing my parenting style with Riley and not being able to go walk to the park, stop for ice cream, chase her around the zoo.  But bed rest was inevitable and once we hit 20 weeks – it became the doctor’s order.  These were a few things that made life easier while on bed rest at home (before and after we knew our babies were sick)

  • COMPANY!  Leave your door unlocked and allow for visitors to walk right in.  Make sure they text or call beforehand as to not interrupt a nap / bad time… but say yes to company.  There were times I was feeling so down or had not showered or the house was a mess – and the thought of an aunt, friend, cousin stopping by seemed stressful.  But the 20 minutes of conversation, the one-on-one attention they would give Riley – was always, always, always worth it.  It’s refreshing – it’s distracting – and it’s even energy-wearing (which is a huge plus when you get sick of trying to sleep).
  • Meal trains & food drop off is the greatest invention to this planet.  I had several friends and family members set up different meal trains and it saved our lives.  I wasn’t allowed to stand in the kitchen and cook – and Mac would get home just in time for dinner so having a fully cooked meal right on our porch was priceless.  Our old nanny / good friend Erin had the brilliant idea to put a cooler on our porch with a note to drop off inside.  The meal train had specific instructions on when to drop off and to have it prepared and ready to eat.  For months we ate like kings (and I actually miss majority of the meals).  We had everything from lasagna to chili to enchiladas to roasted chicken to homemade soups to desserts galore.  Some of our friends were so creative with their meals and would include an appetizer, some beer for Mac / sparkling wine for me, flowers, and special treats for Riley.  I’ve had the honor (over the past year) of doing meal drop offs in return for some dear friends and if you’ve never done one – DO IT.  It’s rewarding, heart-warming, and fun to both give and receive a meal.  (My big triplet belly and my Aunt Patty’s famous baked french onion soup)
  • Keep us busy!  Days blend into nights blend back into days when you’re on bed rest.  Combine that with a devastating / scary pregnancy and you have the right combination to drive anyone into full depression and insanity.  Even though we reached a point where my doctors appointments were absolutely gut-wrenching, I would look forward to them just because I was able to leave the house and get fresh air.  So – be creative on how to keep life interesting while on the couch or in bed.  My aunts were amazing at dropping off the BEST care packages full of slippers, new pajamas, robes, crayons and colored pencils, plenty of easy read (uplifting) books and magazines, and tons of crafts that I could do with Riley while still resting.  This was so huge for me because I am an artist to the core and so is Riley.. and it’s what we do together.  I missed being able to run to Hobby Lobby and create a new pinterest-work-of-art… so my aunts were amazing at filling this void.  Riley and I made gingerbread houses, rings, friendship bracelets, and colored probably a trillion pictures.  It not only kept me busy but it continued to solidify my bond with Riley during a very tumultuous time.  For these short moments – I was still her normal mom and that was beyond healing for me (and possibly her too).
    

    

    
  • Care packages.. care package…oh how I miss those care packages.  My sister, sister-in-laws, friends would send me the best bed rest packages.  From make-up wipes to lotions to nail polish to my favorite candy… mail deliveries were the highlight of my day.  Standing up in the shower long enough to wash my hair was at times horrifically painful – but I couldn’t stand laying in bed day after day without washing my hair, putting on new pajamas, feeling clean.  So on those in between days – it was a miracle what a little nail polish would do for the spirit!
  • Help make the day-to-day stuff easier.  We hired a cleaning lady that would come every week to do the cleaning that I could no longer do.  We had family and friends who would help with laundry so that it didn’t all fall on Mac’s shoulders.  We had a whole calendar running of who could take Riley to school, who could pick her up, who would stay and help me out around the house.  I didn’t have the capacity to take on the stress of figuring it all out – so my family and friends joined together, came up with a plan and we made it work.  Riley loved the revolving door of happy faces and I loved knowing she, and our home, were taken care of.
  • I don’t even know where to put this last one because I feel like it needs a category of it’s own – as it’s hands down the most memorable, thoughtful gesture that was done for us (ever).  When we returned home from our first hospital stay – the one in which we found our we would be losing Greyson and Oliver – it was the week after Thanksgiving.  Our street was already festive and lit up with holiday lights and decorations – and one of the first things I said to Mac was “I can’t even picture decorating this year but how can we not for Riley?”.  It sounds so simple and stupid to have been worrying about Christmas lights when we were dealing with the impending death of our babies – but it was just one more thing I felt robbed by.  Mac and I kept that conversation to ourselves and decided that maybe this year we just skip the lights and consider a tree in a few weeks.  The next night – some of my family was over and I noticed some commotion outside our house.  I looked out the window to see 5 of our neighborhood guy friends – each with arm fulls of lights, electrical cords, holiday plants and my favorite – two giant blow up Christmas characters.  On their very own accord – without ever hearing my sad words – decided to decorate our house for Christmas.  I cried for hours, possibly days at their kind and generous gesture.  Each of these guys have a wife, kids, and a home of their own to decorate – and the fact that they spent a few hours decorating ours – was literally life changing.  I have been doing a similar gesture for a family who lost their 3 year old son to cancer last year – and have decorated their porch for Fall.. in hopes that if even the tiniest bit of what I felt gets transferred to them.. it’s worth it.
  • 

  Hospitalized Bed Rest:

  There are no longer days than when you’re on extended hospitalized bed rest.  The beds are uncomfortable, you’re woken up every few hours to check vitals, there are constant monitors beeping, the food isn’t exciting, and worst of all – you’re away from home.  I could.not.handle being in the hospital and away from Riley.  It was some of my darkest days.  The doctors would always tell me that I had a powerful brain – and it seemed to prevent even the strongest sleeping meds from allowing me to sleep.. but they were right. I constantly worried about if Mac was sleeping okay in the hospital bed next to me, if Riley was awake and missing me at home, if the next ultrasound would show that one of my boys were gone.  It was an awful environment for me – even though I was given the best care possible.  Thankfully to my friends and family – I survived it with a little bit of love and tenderness.

  • Visit, visit, visit.  Most hospitals have pretty flexible visiting hours and use them.  Again – call before you make the trip – but there was not a single visitor I turned down.  It meant the world to me.  I loved having someone come sit in the room and either listen to me cry or distract me with stories about their latest work crush (thanks Kelly :)).  Visitors not only helped the time pass, but they allowed me a connection with the outside world.  We made sure that someone brought Riley to visit me at least once a day – and that of course, was my favorite visitor.
  • Make the hospital feel like home.  This sounds crazy and I definitely rolled my eyes when Mac brought in an actual TV from the walls of our home into the hospital room – but it made a difference.  We had a better screen – we had access to movies off our IPAD – I was eventually proud of his idea.  I had my family bring me my pillow and blankets.  My aunt was one second away from buying me a lamp for the room to make it seem less dingy – but we drew the line on that one : )  Two of the greatest friends in the world came and decorated my hospital room for Christmas – I had about 400 tinsel trees and tons of cute decorations to smile at.  My step-mom brought a beautiful holiday plant to add to the flowers others had sent.  Riley drew me pictures and we decorated the walls with them.  These gestures didn’t fix the situation I was in – it didn’t make me love staying at a hospital for weeks on end – but it did make me feel loved, feel more comfortable, and a teeny bit claustrophic : ) (kidding, kinda).
  • 
  • GOOD FOOD!  Our hospital menu was so bad that the only thing I would eat were pancakes… everything else was borderline inedible.   So we were always super grateful for our friends / family who would pick up food for us, order it to our room, or best yet – bring a home-cooked meal.  We were alone for Thanksgiving and I was so down from the combo of not being with my family (and Riley) and missing out on my favorite meal of the year.  Laurie showed up nice and early the very next morning with best leftovers and all my sadness was instantly erased.  My aunt Kim picked up a fancy steak dinner for us one night – and Mac and I joked that it was our first date night we had had in awhile.  My other aunts brought tons of candy, snacks, and favorite treats to stock my room with.  It’s insanely easy to order a pizza and have it delivered to a hospital or to drop off a bag of Portillos… the gesture goes a long way and I can guarantee it’s better food than any hospital could offer.
  • 

    

    New pajamas, shampoo / conditioner, razors, sandals for the showers, and body wash= winning the lottery.  My cousin Shannon brought an entire shower kit for me – our old nanny Kimberly brought new pajamas for me to sleep in – my aunts brought comfy socks and slippers.  Our shower wasn’t in our room so I would have to walk down the hall… and to have a little shower caddy and sandals to wear was so helpful.

  • Distractions!  (see above “Home Bed Rest – Keep Us Busy”)

  Baby Loss:

  This is one of the hardest sections to give advice on because everyone grieves, heals, yearns differently.  I went through so many different stages – I would want company, then I would want to disappear.  I would want to talk, then I would want to shut everyone out.  I feel like that’s a common pattern of grief – it’s unpredictable.  So I can imagine it’s difficult to be on the outside of this – to try to figure out the right way to support someone without knowing where their head is at on a day to day basis.  I can tell you this – just support.  I don’t think I will ever be the same as I was before we lost our angels.  There is not a day that goes by where I don’t think of them – imagine my life with them – or feel the loss of their lives.  So if you’re ever curious on where my head is at – you can always fall back to this:  It really never goes away.  Keep supporting.  Keep showing me your love.  Keep acknowledging their lives.  It’s just as important now as it was the day they passed.  Thankfully – I am filled to the brim with some of the most loving people and their show of support has been endless.

  • Most importantly – acknowledge that my two sons existed.  Though only a few were able to witness them in the flesh – they will forever be my children.  Say their names.  Ask me how I’m feeling.  Tell me if you’re thinking about them.  My sister Steph is so great at always telling me when she sees a sign from above.. whether it’s two deers chasing eachother on her morning run or a two butterflies flying in the yard.. she shares it with me.  Do this for others.
  • Gifts or symbols of their lives – I am sometimes in awe at how thoughtful people have been with honoring our children.  I have received jewelry – statues – plaques – memory boxes – grave decorations / stones – coffee mugs – so so many items that I keep, treasure, wear, display as reminders of my sweet angels.  One of my favorite gifts was from my friend Rachael… she sent us a rosemary tree when Oliver passed away with the sweetest note.  Days later she sent a second tree in memory of Greyson.  It was an unexpected gift, but the symbolism and thoughtfulness behind it brought tears to my eyes for weeks.
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  • Visits to the cemetery – my boys’ plot is the most sacred place.  It’s where we laid them to rest – it’s where I can visit and connect with them.  It’s a place I can publicly show my love – in the form of holiday decorations, fresh flowers, little trinkets.  I have two friends who have made a few trips to visit them – one is my best friend, the other is someone I may have only met in person once or twice.  But they have both visited, prayed, connected, and shared their experience with me.  I don’t think there is anything that pulls at my heart strings more.  The fact that they have taken time out of their day to visit a spot that half of my soul resides in – it almost always makes me speechless.
    

    

     

  • Remember dates, anniversaries and birthdays  Attend memorial masses or services honoring these babies’ lives.  My cousin recently attended on our memorial services at the hospital our boys were born at and it felt good to have her be a part of my community for a short period of time.  Acknowledge the birthdays – my good friend Sara donated her wedding dress on our triplet’s first birthday in honor of Oliver and Greyson.  It’s a gift that I’ve found myself at a loss of words over.  Tomorrow, October 15th is a day in which we honor all the babies that were taken too soon.  The tradition is to light a candle at 7:00pm and remember their lives.  It’s a simple thing to do but can mean so much to all the parents out there who are grieving the babies they long to hold.
  • Continued love and support.  As I mentioned – there really is no end date to grieving. It changes – but it never truly fades.  The people in my life who understand that – who continue to show their love and support and encouragement – are the ones who I hold the dearest in my heart.  Whether it’s a text saying that I’m doing a good job – a drop-off of cupcakes when I’m having a hard day – or just a reminder that I’m loved goes a long way.  My friend Brooke sent me a candle and my friend Rachael sent me the softest robe I’ve ever worn with a note saying she hopes it provides me comfort and the hug she couldn’t give me from afar.  My best friend Laura used to send me daily uplifting text messages as a way to keep me going – and her quotes are now framed and hung in our living room.  This past week – I received a package in the mail with the cutest pink and blue Luluroe shirt from a college friend.  The note she included said she received it in her shipment and thought of me as this month is Infant & Child Loss Awareness Month and the symbolic colors are pink and blue.  I was totally taken aback by the gift and put the shirt on instantly.  It’s stuff like this – a completely unexpected dose of support.
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  I could go on and on forever and there may be a part two to this entry – as I’m sure I’m forgetting a million things.  My heart is forever grateful for all the love and support we have received throughout the years. It’s made me a better person – it’s made me want to give back to anyone in need – and it has made me feel somewhat whole.

  Thank you to everyone who has contributed to our healing. And a special thank you to Susan & Pam for surprising me with the most meaningful gifts of love this week.

   

   

   

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• 21 Questions, Very Few Answers

  Posted at 7:18 pm by saramarieobrien, on September 14, 2016

  My daughter could easily be nicknamed “The Question Master”.  From sun up, to sun down… her brain is going full throttle and her curiosity  has peaked it’s highest level. I love to see how her mind works, what catches her interest, and the persistence she has when begging for every little detail.  Just today on our way home from the grocery store, she asked me from the backseat:

  “Mom, can you tell me about doctor tools?”

  “Mom, why are most buildings made out of brick?”

  “Mom, are there tornadoes in Hawaii?”

  The questions come rapid fire and not always sparked by an obvious subject.  Thankfully – she can usually be satisfied with a semi-factual answer, a quick google-search, or my favorite response.. a question right back.

  “I don’t know Riley.  Do you think there are tornadoes in Hawaii?”

  Sometimes the questions get a little more personal and I struggle to find the right answer. One afternoon this past summer, we were all walking home from the pool.  Riley was exhausted and near the point of falling asleep when she randomly popped up and said:

  “Mom – is Grandma Karen your mom?”

  Gulp.  ‘Grandma Karen’ is my stepmom, so I totally understood why she would think that. But she isn’t my ‘mom’.  Mac and I looked at each other in fear of how to answer the questions that were to follow from our sweet, naive daughter.

  “No, Riley.  Grandma Karen isn’t my mom.  My mom’s name is Kristie”

  “Have I met your mom?  Where does she live?  Can I meet her?”

  What I wanted to respond was not appropriate for a 5 year old’s ears.  My parents were married 22 years when my mom had an affair and within months she had given up on me and my sisters and started a new life without us.  It’s been 16 years since she’s been in our lives… she doesn’t know our husbands, hasn’t met her 6 grandchildren.  There’s no fun way to explain this situation.

  “Riley – you haven’t met her… she lives somewhere around here I think.. I haven’t seen her in a long time… but maybe someday you’ll meet her”.

  That answer was enough to satisfy her for the day and thankfully I had a therapy appointment before she had the next chance to torture me with questions.  My therapist gave me a way to explain the relationship to her.  So a few days later, while feeding Tommy..

  “Mom, what’s your moms name again?  When can I meet her?”

  I ran through the narrative that my therapist had suggested I try – in a very simple way, explain that my mom isn’t feeling well, and it’s not something the doctors can fix, because it’s her head and how she makes decisions, and hopefully someday she will be all better and we can see her again.  Riley digested it for a bit, took a sip of chocolate milk and then with a very content look on her face, said:

  “Oh okay.  So your mommy’s brain doesn’t work?  Like she doesn’t have a brain?  Oh – so your mommy is like the scarecrow from Wizard of Oz”.

  I almost died.  Part of me wanted to start laughing, another part of me wanted to cry thinking about the next time she tells her friends that her ‘grandma she’s never met is from the wizard of oz’…

  Obviously we’re aware that this is what kids do.  They’re curious.  And at certain points in the past few years – we have had to anticipate her questions around more sensitive topics.  When we found out we were pregnant with triplets, we made every second of every day into this fairy tale like adventure of what it will be like for Riley to be the boss of three little boys.  Because we were afraid three tiny babies would rock her ‘only child’ world to the core – we wanted to prepare her with a positive mindset.  Lucky for us, she didn’t take much convincing and throughout the pregnancy would brag to complete strangers that her mommy had three brothers in her belly and she was going to be the big sister.   Several times a day, she would hold her hand on three random places on my giant stomach and say “hey tommy – can you kick me”, “hey ollie – can you kick me”, and “hey grey – can you kick me”.  She would get so excited every time I would fake my stomach jumping in response to her sweet requests.

  When we found out our boys were sick – I was devastated for a million reasons.  But one of the top 5 was that this incredible gift was going to be taken away from Riley.  And how was I supposed to explain this situation to her.  Thanks be to my therapist – I had an immediate, professional psychologist approved, plan.  She told me to not mention a word to Riley about her brothers being sick – the goal was to not draw any connections between sick = death.  Because for a 3 year old who catches every germ that preschool can offer – it can cause instant fear.  So as hard and painful as it was – every time she visited me in the hospital and cried asking why I couldn’t come home, I would explain that the doctors had to make sure mommy and her brothers were nice and healthy.  The plan was to keep repeating this to her until one or more of her brothers had passed away.   In the meantime, I was also encouraged to start telling her exciting stories about heaven.  To create some sort of Disney story about angels that fly and play on the clouds and how they get to meet Jesus and paint this amazing picture of the unknown world where our boys, unbeknownst to her, would soon be entering.  Ideally – we would create an image in her mind that wasn’t scary, wasn’t associated with being sick.  Riley took to it and up until the very day that Ollie passed away – she would talk to her three brothers, beg them for a kick, and though my belly was becoming more silent.. I would gift her with the same exaggerated movements and almost always burst into tears.

  

  A few weeks after Ollie and Grey’s hearts stopped beating, Mac and I decided it was time to have a conversation with Riley.   There was no way I could get the words out – so Mac took the lead and in a very simple sentence said “Riley – do you remember how we told you the story about all the beautiful angels that fly up in the sky and play around in Heaven?  Well your brothers Ollie and Grey are angels now.  They have angels wings and they are in Heaven and can hear us when we pray and are going to make sure your brother Tommy is safe.  We have to keep taking good care of mommy and hopefully Tommy will be here soon”.   I wanted to vomit, but Riley gave a simple “okay!” and jumped off the bed.

  For the weeks that stood in between two boys going to Heaven, and three babies being delivered – Riley was silent on the topic.  Even weeks into Tommy’s stay in the NICU – she would ask questions about Tommy and we would look at pictures (our NICU didn’t allow any visitors except parents and grandparents) and talk about his different tubes, machines, silly sounds, etc but there was no talk about Ollie and Grey from her.  It pained me because as much as this was a healthy process for a 3 year old – I hated feeling they had that quickly been washed away from her memory.

  The day we took Riley to the NICU with us – it all changed.  Our nurse had offered to show Tommy to Riley through the glass entrance door – and Riley was ecstatic.  We caught the moment on video and couldn’t get over her sweet face when Tommy yawned.

  But the second  we got in the car, Riley started crying.  I figured she was upset because we were leaving without Tommy or she was confused or million other things that seemed fitting.  Instead – she let out a huge sob and said “Mom, I want three brothers.  Not just one.  Why don’t I have three brothers?”.   I had no answers.  I was still searching for that answer myself – still in a complete state of shock that I didn’t have three baby brothers to give to Riley.   Painting a fun picture of angels flying around after I had just held their lifeless bodies weeks prior – was impossible.  I was angry, sad, confused, and feeling guilty to have disappointed my daughter.

  Throughout the past year,  she’s had more questions and I’ve had less answers.

  “Mom – how did Ollie and Grey get to Heaven?”

  “When can I meet my brothers?”

  “Why did Tommy live in the hospital but my others brothers didn’t”

  Her timing is usually when I’m least expecting it and but I’ve gotten better at not falling to pieces after she walks away.

  Last night was an exception however.  Riley is the ‘star of the day’ today in her kindergarten class and so we were tasked last night with putting together a bag of her favorite things.  We collected the easy items first – her elephant, Buddy,  her latest favorite princess Elena, and an obscene amount of Shopkins.  Then we got to work on a collage of pictures of her family.  We went through some pictures on my computer – printed a few of the ones she thought ‘her friends would think were funny’ and right when we  were taping the last picture on – she said “Mom, what about Ollie and Grey?  Where is a picture of them?”.   Enter:  instant tears.  The truth is – the pictures I have of them aren’t ones you would tape onto a kindergarten collage to be passed around a room of 5 year olds.  So I suggested she draw a picture instead – maybe draw two little angels – if she felt like she wanted to share that she has brothers in heaven.  Enter:  Riley’s instant tears.  Her eyes welled up and she started pulling at her lip like she does when she’s avoiding a full-out cry.

  “But mom, I can’t draw them because I don’t know what they look like.  What do they look like?”

  The pit in my stomach hasn’t gone away since.  I didn’t have an answer for her then – and I don’t have one now.  The only thing I could choke out was “I think they look like Tommy” and then I wanted to throw up.  It took me months to even look Tommy in the eyes as a newborn baby because I was so afraid of the deep pain that followed for me.  The desperation to know if his brothers’ eyes would have been as big and bright.  The agonizing curiosity if the twins would have looked more like Riley or if it would have been a no brainer Tommy’s triplet brothers.  Were they blonde?  Were they brunettes?  I have no clue and I sure as hell have no answer to give Riley.   My greatest wish in life is to know what they look like as healthy 1.5 year old boys – to be able to describe every single square inch of them – to know what separated them from being identical twins and what made them just like Tommy.  I don’t know and I won’t know until someday when I’m reunited with them.  And  I hope on that day I can send down a magical drawing to Riley so she can have a sneak peak of what her two brothers look like.

  In the meantime, O & G, a visit to me in my dreams would be amazing.

  XO,

  Sara

   

   

   

   

   

   

   

   

   

   

   

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• Signs from Above

  Posted at 5:05 pm by saramarieobrien, on July 21, 2016

  

  Several months ago I launched my new photography business.  I have always been passionate about photography, studied it in college, have taken several courses to fine tune my skills, and enjoy every minute of the art behind it.  As I mentioned in a previous blog post – the driver for this new business launch was personal experience.  The realization that photographs can be one of life’s greatest gifts – especially to those who are only left with memories of the past, not able to make more in the future.  Along with my standard photo shoots – newborn, family, engagement, milestone – I offer a very special session called “Moment of Grace”.  It’s a one hour session – free of charge – for delicate situations (terminal illness, stillbirth, NICU babies).  Sadly, I had a few opportunities to offer this emotional gift to family members and dear friends prior to my business launch – but I’m thankful that I was able to confirm my desire to pay it forward.  By giving my heart to strangers – I am turning a small portion of my own grief into something tangible.  And it somehow draws me closer to my twin boys.

  A few weeks ago, I was driving with my kids to Tommy’s haircut appointment and noticed I had a voicemail message from an unknown number.  I played the message and instantly had a pit in my stomach.  The voicemail was from the amazing Marlene Forte – founder of Angel Babies (the organization that creates angel gowns from wedding dresses – the very organization that provided our two angels with beautiful baptismal gowns the day they were born).  Marlene asked that I call her back as she had somewhat of an urgent request.  I called back instantly.  A young lady who is a part of the Angel Baby community (by means of dress donation) had just found out that morning that her precious baby girl – at 40 weeks gestation – had passed away.  She was going to be induced the following day and was hoping to have a photographer present to capture the short-time she would spend with her daughter.  Without hesitation I said ‘yes’ and told Marlene to keep me posted on details.  I called Mac instantly to make sure we had childcare covered and then burst into tears thinking about what this sweet family would soon endure.

  Around 8:00pm that night, I received a phone call from a number my heart told me I had to answer (ironically, I was putting Tommy to bed and happened to be staring at my phone as it rang – otherwise I would have missed it since the ringer was on silent).  I answered to a somber nurse stating that her patient had just delivered her baby girl and the family was requesting I make my way over to the hospital.  I put Tommy in his bed, threw on a spit-up free shirt, grabbed my camera bag and was in the car within 5 minutes.  The hospital is only 15 minutes away from our home but the drive seemed to take 45 minutes as my anxiety was building quickly.  Would I be able to hold it together as I watched this family experience a true tragedy?  Would I say the right things?  Would I be the right kind of support?  Would I capture the pictures they need to hold on to forever?  I was starting to get overwhelmed with emotions and as I pulled into the parking lot I literally looked to the sky and pleaded “Please Ollie and Grey… please give me a sign that I should be doing this.  That I’m strong enough to provide for this poor family.. that I’m meant to be in this position.  Please..  I’m doing this for you two.  Any sign will be good enough”.  Of course lightning didn’t strike but I marched forward anyhow.. hoping my prayers were heard.

  Once I arrived on the 2nd floor – I was lead to the delivery room and my stomach dropped at the familiar ‘signage’ on the door.  A single rose indicating that there has been a loss.  The same rose I saw on my friend Rachel’s door when she delivered her angel Sienna.  Similar signage was placed on my own hospital room when we delivered the triplets – but instead I had two butterflies indicating two angels, and a bunny indicating a baby in the NICU.

  

  (our room below)

  

  I opened the door and introduced myself to the mom, dad, and Grandmother who were all in the room.  I asked if I could meet their sweet angel and when I peered over to see her face, I looked at the mom and said “her name is Elizabeth, right?” (because I swore that’s what Marlene had told me earlier) and instead I was told “No, her name is Riley”.   If my jaw could have hit the floor, it would have.  That was my sign.  I still have goosebumps every time I think of it.

  I spent the next 2 hours with this family.  Behind my lens, I watch the most beautiful moments – the most heart breaking moments – the most tender ones.  I watched as an incredibly supportive family held each other up – while also surrendering to the grief.  I saw a mother hold her absolutely perfect baby girl on her chest and I silently prayed for newborn breaths.  I watched a dad hold his precious angel, dressed in a delicate lace angel gown, and stare at her as any father would his first baby girl.  I witnessed two big brothers – one who is 4, the other who is 2 – enter the room, meet their sister, hold her and ask endless questions.  That was the moment my tears could no longer be held back.  No mother should have to explain to her children that their new baby sister isn’t coming home – that she went to Heaven instead.  I’m included in that ‘no mother’ list and the moment was too real, too raw for me.  I had that same conversation with my Riley and I am still bombarded with questions from her – and my heart breaks every single time.

  That night was life changing for me and I truly have not stopped praying, thinking, grieving for this family ever since.  I am forever grateful that they allowed me into the privacy of their hospital room, for letting me hold their beautiful daughter, for giving me the chance to pay it forward.  When I held their daughter, I pictured her sitting with Oliver and Greyson – watching down on all of us.  I can only hope my boys welcomed Riley into Heaven with big toothy smiles (like Tommy boy) and teach her how to give her mom, dad, brothers constant love, strength, and signs from above.

  For anyone who is interested in donating or volunteering for Angel Babies – you can like Marlene’s facebook page below.  Once you join the group, you can contact Marlene directly for dress donation, drop off info, etc.  Please note that if you choose to donate a wedding dress in honor of my boys Oliver and Greyson – I offer a free photo shoot prior to dress drop off (i.e. your daughter in your dress, etc).  Contact me at saraobrienphotography@gmail.com for details.  

  Angel Babies Facebook Page

  XO,

  Sara

   

   

   

   

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• I promise to hold you and never let go

  Posted at 4:42 pm by saramarieobrien, on June 24, 2016

  Anyone who has read my previous blog posts understands how much I love my therapist.  She is insanely skilled, compassionate, and incredibly wise.  One of my favorite parts of our weekly sessions together is her knowledge sharing.  Instead of just hearing me out, letting me cry, giving me a generic psychoanalytic explanation for my emotional state – she will force me to give the answers and then will back me up with actual research and data.  Last week I met with her a few days prior to our one year anniversary of Oliver and Greyson’s Memorial Service.  I was oddly calm and comfortable and told her that I was handling the upcoming anniversary quite well.  Since Mac’s birthday is one day before the anniversary (and last years birthday was pretty much overlooked) – my focus was making sure he felt loved and special and celebrated.  In the same breath however, I admitted my fear in being able to so easily compartmentalize my emotions.  In the past – my grief has consumed so many of our celebrations and I have to work so hard to truly enjoy the good.  So why was this week so easy for me?  Was I moving too fast through the stages of grief?  Had I reached “acceptance”?   With the launch of my new photography business – I am jam packed – but was that inhibiting me from connecting with my grief and the loss of our boys?  It was unsettling to say the least.  My therapist responded with the most fascinating information.

  We have been told there are 5 stages to grief:  denial, anger, bargaining, depression and acceptance.  Before I ever had to endure any of my own real ‘grief’ I always imagined these stages as being laid out in a very straight path.  Once you work through one stage, you move onto the next, and never look back.  I’ve learned through my own journey that could not be more false – but what I didn’t know is that the 5 stages of grief were actually designed for terminally ill patients – not for the people who lose the loved one.  It was originally intended to describe how people deal with their own impending deaths.  Doesn’t that make so much sense?   I watch my cousins who recently lost their father and have wondered ‘do they really just have to keep working towards accepting it’ and being okay with their father dying and missing out on so much life?  Or families I know who have lost a toddler?  Why is the end goal ‘acceptance’?  It now makes sense that the theory of grief is not supposed to apply to ‘us’.

  The conversation was eye opening for me because my therapist backed up that research with advice on not pressuring myself to analyze which ‘stage’ I’m in and that grief isn’t linear.  One day I will feel closer to peace and the next I may be back to shock.  The grief may strike hard in 5 years, 10 years, in less busy times of my life, or in moments I least expect it to.  I left her office for the first time in months without tears in my eyes and truly excited to spend the weekend celebrating Mac’s birthday, father’s day, and enjoying family time.

  Fast forward to exactly one week later – I found myself in her office sobbing uncontrollably.  The most unexpected event triggered a complete meltdown and there I was, sitting on my therapists couch on Wednesday, blaming myself for the loss of Tommy’s triplet brothers.  Back to resenting my body for being incapable of keeping my children healthy and alive.  Pointing fingers at my own reflection and wondering why I was robbed of being an earthly mother to ALL of my children.  She was right… grief is unexpected and I wasn’t just oddly ‘at peace’ with it all.  I am still knee-deep in it.

  Dr. N’s advice was to keep writing, keep re-telling my story, but try to include forgiveness in it.  The boy’s memorial service is the perfect story to re-tell as it was filled with such deep sorrow but also moments of healing.  And ultimately, my outloud cry for forgiveness from my sons.

  Prior to delivering our triplet boys, Mac and I had decided to have Ollie and Grey cremated.  This was a suggestion made by several counselors as it would allow us time to process and plan for their final resting place – and still be able to focus 100% of our energy on making sure Tommy survived his months in the NICU.  We worked with an amazing funeral home in Downers Grove (run by a friend of my dad’s) and two days after we delivered our boys, we signed their death certificates and the director of the funeral home drove out to the hospital to pick up our children.  A few weeks later we were notified that their remains were ready – but both Mac and I delayed that ‘pick up’ as long as possible.  I searched endlessly for two matching urns that seemed beautiful enough to hold our twins and I eventually made the drive to Downers Grove.  I drove home sobbing with two small cardboard boxes labeled with “Oliver McCarthy O’Brien” and “Greyson Alexander O’Brien” sat in the passenger seat next to me.  Mac placed their remains in the urns and for a few months, their matching urns sat on our upstairs hallway console table.

  

  Mac and I had always agreed on burying their remains as we feared how Tommy (and even Riley) would eventually process having the urns visible in our home.  The struggle for me however was it felt right having their remains at home.  I believe in Heaven and I know in my heart that ALL of our lost babies are there.  But in a way that’s hard to explain – having their urns to say goodnight to – after kissing my living children goodnight – was easier than imagining them in a dark, lonely cemetery somewhere.  It wasn’t until my therapist said loud and clear “Sara, your boys are not home with you.  They are in Heaven” that I realized maybe it was time to proceed with our original plan and find them a permanent home.  Thankfully we stumbled upon the most beautiful piece of earth possible in Wheaton, IL and came up with a plan that felt even more ‘right’.  Our boys would be buried together in a single urn, in a single plot, at the Catholic cemetery in Wheaton where they have an angel garden called the “Holy Innocence”.  It is an area of the cemetery for children and infants and it is breath-taking (literally).  It’s filled with pinwheels, fresh flowers, toys, memorabilia, birthday balloons, and well manicured grave stones inscribed with sweet baby names and very short timelines.  Mac and I chose a spot close to a monument that says “And Jesus said let the little ones come to me” and near a beautiful tree where we knew we would be able to spend time under.  I designed the boys’ gravestone with matching angels in each corner and we set a date for the service:  June 19th, 2015.

  One of the most challenging parts of planning the memorial service was knowing that this was the only public opportunity we had to show our love for these two boys.  But how do you make a service personal, meaningful and special when not more than 3 people attending the service had the opportunity to meet our angels and even us, as their parents, had less than 2 hours holding them in their flesh?  Who do we invite and how do we ensure they’ll be comfortable attending?  Our first step was trying to find someone to lead the service and that was an easy choice.  Mac and I have such a strong connect with St. Vincent de Paul Parish in Chicago.. it’s where I received my adult communion / confirmation.. it’s where we were married… it’s where Riley was baptized… and eventually where Tommy was as well.  I always had a strong bond with Father Chris Robinson and his ability to relate, his gentle and kind demeanor, and his goofy sense of humor.  I reached out to the parish, explained our situation, and received the most touching response that they would be more than happy to be involved in the service and were honored to do so.  Mac and I met with Fr. Chris several times before the memorial service – talked about our journey, cried over the loss, and spoke of how much this one occassion would mean to us.  We decided to only invite very close family who were directly involved in our pregnancy, who helped us survive our journey, my best friend who stood by my side in my darkest days, and Riley’s previous nanny / now close friend who fed our family meals, prayed for us and showed us more love than we could ever possibly return.  The tactical side of planning the memorial service was easy.  The emotional part was impossible.

  Days leading up to the service were horrific.   I had a maximum number of anxiety attacks and was finally prescribed a low-dose anti-depressant to ensure I would actually live through the service.  My therapist taught me some very important coping skills to use during the event – how to allow myself to feel deeply, yet to stay grounded and catch my breath in the case I felt myself spiraling.  I picked out a blue dress symbolic of my sweet ‘boys’ (and wanted to cry every time a sales associate would ask what ‘fun event I had planned’).  I found a coordinated blue and white dress for Riley.  I had several long preparatory conversations with Riley (instructed by Dr. N.) about what to expect – that she ‘might see mommy, daddy, grandma, grandpa, Laurie, Aunt Kiki crying but that it’s good to show we miss Ollie and Grey and that we will still be okay’.  Mac and I picked out readings and asked my dad and Mac’s mom if they would read them as the role of ‘grandparents’.  I designed the memorial program and included a few of my favorite images and poems.  We picked out a new urn to place both boys in to (so that we could keep their original urns in our home) and we signed a contract with the cemetery that states when I pass away someday – their urn will be removed from angel garden and buried with me (I have a hard time even writing that sentence without crying).  I ordered balloons to be sent off by Riley and Tommy – and Riley drew the most random pictures that tied around each string.  Lastly and by far the most touching, I reached out to a dear friend to see if she would do the utmost favor and perform a special song during their service.  A few days before, she told me that not only had she been practicing the song but she had also gathered two other friends and would be performing the song with a violinist and guitarist.  I cried for hours just hearing of this kind gesture – and as you will watch in the video – their performance is breath-taking and continues to make me cry every single time I watch it.

  There aren’t many words to write to describe the feeling of sitting front row at your own babies funeral (thankfully we chose to record it because I was afraid my emotions would force me to forget it).  In the matter of a half hour – I felt devastated, loved, proud, empty, fulfilled, weak, strong, supported, and alone.  I couldn’t look at Tommy during the service because his face made the situation all too visual for me.  I will never forget the feeling of my sister putting her arms around me when I needed it the most.  I remember every single persons’ face and embrace that day.  I have never felt more proud of my husband for openly sharing his emotions and deepest feelings.  And I couldn’t have felt more touched by Fr. Chris’ words in saying that our story, our children have changed his life and the students who are praying for us endlessly.

  The day was perfect in that I felt I did every single thing I could possibly do to show my babies how much I love them.  It’s a day I would never want to relive but I know I could not have lived without.

  Below is the link to the memorial service… some beautiful photographs that were taken.. and the letters Mac and I shared.  My heart feels 1,000 pounds heavy as I relive some of these moments, words, emotions.

  Grief is real and a total bitch.

  

  Our letters to Ollie & Grey:

  Mac’s Letter

  Sara’s Letter (1)

  Memorial Program:

  Memorial Program_Oliver and Greyson

   

   

   

   

   

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• Infertility is nothing to be quiet about…

  Posted at 4:10 pm by saramarieobrien, on April 29, 2016

  

  April 24th, 2016 marked the first day of National Infertility Awareness Week and my social medias pages have been flooded with personal stories, quotes, resources, and statistics. Before I entered the world of infertility, I knew very little about it and to be honest – didn’t really care to know because it didn’t affect me personally.  Now, that world defines a major part of my life.  It broke me.  It crushed me.  It challenged me beyond my physical, emotional, and mental limitations.  And it also gave me some of my greatest gifts.

  Yet, some of the people closest to me do not know an ounce of what I endured.

  There is a stigma surrounding infertility that you must remain quiet and private about it.  It’s not dinner conversation – you don’t speak of it over coffee or during a play date with friends.  You whisper about someone going through it and don’t dare to ask how they’re doing.  It’s one of the most confusing stigmas I’ve ever encountered.  Infertility is a disease.  It’s a medical condition that requires doctors, second-third-fourth opinions, procedures, incredibly difficult decisions, horrific costs, constant battles with insurance companies, and the need for an enormously large support system to get you through it.  Yet – so many people don’t even tell their own family that they’re drowning in it.  Infertility is one of the loneliest, most isolating, self-defeating clubs I’ve ever joined and this world needs to be more aware of it’s conditions and the people who are suffering from it.

  Okay – sorry for the quick rant.

  When Mac and I were dating – I wound up pregnant.  I was on birth control at the time so this came as the ultimate surprise.  I was living in a small studio in Chicago working full-time at a commercial real estate firm and making just enough money to cover my rent.   When we found out we were expecting – we hurried up, sold all of my furniture, found someone to rent my studio, and moved into Mac’s two bedroom condo.  We told our family and friends right away because we were panicked by how quickly our carefree lives were going to changed.  And we were blessed with beautiful naivety; a positive pregnancy test = a baby, right?  Fast forward to my 10 week ultrasound and a lifeless baby, we were crushed.  Our worlds were flipped upside down, then right-side up, then upside down again.  I had a D&C (a procedure where a doctor has to manually remove the pregnancy) – and my doctor reassured me that miscarriages happen to 1 in 4 pregnancies and that we just fell on bad luck / abnormal chromosomes.  We turned down the opportunity to do genetic testing on our baby because at the time it didn’t seem relevant.  We weren’t actively trying to conceive and I was convinced that the problem wasn’t me.  Hell – I had conceived while on birth control.  Clearly I was a fertile-mertle.  But that loss nearly tore my relationship with Mac apart.  As most men typically do in the case of pregnancy loss – he moved on quicker than I did.  I didn’t know how to immediately switch back to my prior self – bartending on weekends, going to the beach with friends, living the easy life.  25 years old and living in one of the best cities in the world – I wasn’t planning on being a mom.  But the second I saw my baby – I became one.  From that day on, I longed for my next chance to hold a baby in my belly.

  A few years later, Mac and I were married – living in that same condo – and were having our first ‘when should we start trying’ conversation.  Based on our first experience, we 100% believed that we could just stop using birth control, have sex, and we would be painting a nursery the next month.  So we decided to wait a few months – enjoy newlywed life – and try at the end of summer.  By August (after a very intoxicated weekend in Vegas), I was pregnant.  I held my breath at every doctor appointment through the first trimester and especially during the 30 seconds it takes for the doctor to locate the heart beat – but thanks be to God – we had the next closest thing to a text book pregnancy.  No scares, no risks.. just a beautiful, healthy baby girl.  I had a c-section with Riley because my little bff did.not.want.to.leave.my.body.. but I healed quickly with no lingering issues.  I loved every second of being pregnant and almost instantly was craving the chance to do it all over again.

  When Riley turned 1 years old – Mac and I decided to start trying for #2.  But this time – my pregnancy tests were coming back negative.  I started using ovulation kits, tracking my cycle on pregnancy apps, and nothing was happening.  6 months into the process – I wound up in the ER with excruciating stomach pain and ended up in emergency surgery to stop internal bleeding from several erupted ovarian cysts.   The surgery was so messy and involved that the operating surgeon said (word for word) “If you want to get pregnant, hurry up and do so before this happens again”.  It took me another month to recover but Mac and I were back on track – and this time with an answer to why we weren’t getting pregnancy (enter naivety again..):  clearly my ovarian cysts were the problem.  3 more months went by and I was starting to get nervous.  My OB ran a blood panel on my hormone levels and performed an HSG to look for a blockage  (where they fill up your uterus with dye and watch to see how the dye travels through your fallopian tubes… one of my best friends described this process as ‘the scream heard round the world’ and it’s a pretty accurate one..).  Low and behold – the results were a complete disaster.  All of my hormone levels were off and I had a hydrosalpinx tube (aka:  my left fallopian tube was filled with fluid and needed to be removed asap).  She suggested I seek help from a reproductive endocrinologist as this ‘was now beyond her control’.

  I remember walking to my car from that appointment and crying my eyes out.  I felt like my body was betraying me.  How could I have ‘lazy ovaries, a non-working fallopian tube, low hormone levels’ and yet have the sweetest little 1 year old running around the house?  Maybe my first pregnancy was the indicator of my body’s ability – and Riley was the miracle?   I was confused but on a mission to seek the top specialist in Chicago for immediate answers.

  Within one month, I had my first consult at FCI (Fertility Centers of Illinois) in River North.  Mac was out of town on business so my cousin Shannon came to the consultation with me and thankfully took notes the whole time. I walked into the appointment assuming Dr. K would tell me “let’s put you on a few hormones and see what happens. You don’t belong here”… and instead said “You have no option but to have your fallopian tube removed and then we need to start IVF right away.  It’s your only option”.  He walked us through the process, told me that I was a perfect candidate because I was a young 30 year old, healthy woman with two ovaries and previous pregnancies on my chart.  I believed him fully heartily when he walked me out of his office and said “This will be easier than anything you’ve already been through”.   I still hate him for that.

  I had surgery two months later and my OB removed my left fallopian tube.  I was scheduled to start my first IVF cycle in May and wouldn’t you know it – I wound up naturally pregnant two days before my first appointment.  I literally fell to my knees in tears and thanked God for allowing me to dodge the IVF bullet.  I proudly called Dr. K’s office and canceled my appointment and then immediately called my OB to schedule blood work with her.  Blood results confirmed I was pregnant.  Repeat blood work confirmed I was pregnant.  Final blood work confirmed I was losing the pregnancy.  The only emotion I felt was anger.  I was two days away from proceeding with my first IVF cycle – I was mentally prepared for what was ahead – and now we were being teased with a natural pregnancy and subsequent loss.  What sense did this make?

  

  I could spend months walking through every detail of my year with FCI and Dr. K – but it’s better described in one word:  HELL.  I did 3 IVF cycles – two resulted in miscarriage, one resulted in nothing.  That’s about 60 ultrasounds, 350 self-administered injections, $60K in procedures, $15K in meds, daily doctor appointments, weeks and weeks of awful side effects, and heartache beyond measure.  We did $5,000 worth of genetic testing on 5 of our embryos only to find out that they were all perfectly normal and healthy.  I had my 4th abdominal surgery in hopes of discovering a problem that was preventing me from getting and staying pregnant.  I tried juicing.  I did fertility acupuncture for 6 months.  I drank herbal teas.  I listened to fertility meditation on my phone at night.  I gave up and said ‘f@ck it”.. and drank coffee, had wine, exercised and ate junk food.  I did it all and nothing worked.  During my time at FCI – we transferred 6 healthy embryos into my body and I walked away from the clinic with no answers and not a single baby.

  

  

  

  

  

  

  

  

  

  

  

  After leaving FCI – I was determined for an answer.  Even if the answer was ‘you can never have another baby again..’… I needed resolution.  It didn’t make sense to me and I was losing my mind.  My body was becoming a worthless machine and I didn’t care how much more beating it took to get me a baby.   I would lose sleep googling every single possible cure and then cry when I read some of the good and bad outcomes.  My family would tell me to just stop and give myself a break – and that hurt the most.  I couldn’t just stop.  I wanted to build my family and was willing to do just about anything.

  When you leave on fertility clinic and head to another – it’s like starting a new job.  All your prior records need to be faxed over, there is a new process, new protocols, new faces, new personality, new possibilities and new disappointments.  I spent two  months sending my records to all the top clinics in the US… New York, Colorado, and a few highly rated clinics in IL.  I wanted to talk to all the best doctors and see what their recommendation would be.  Thankfully – the #1 doctor out of Colorado had the same opinion as a local doctor in Naperville, IL so I didn’t have to travel far to begin “Quest for Baby #2; Year 2”.  Advanced IVF Institute and Dr. M would be my new home away from home.

  I loved Dr. M instantly.  Not only did he come personally recommended from a close family friend of ours – but he has a confidence to him that’s award winning.  He reviewed all of my records – referred to them in specifics – and delivered an instant diagnosis “you have excessive scar tissue in your uterus.  I don’t know FCI missed this – but they did.  Your options are to undergo surgery to repair or you will need to find a surrogate to carry your baby”.  Easy options, huh?  At this point my I had had 5 abdominal surgeries (including my C-section)  so the thought of being bed-ridden and recovering was nauseating.  But I was not ready to give up and at this point in my journey – the thought of finding a surrogate made me dizzy.  Weeks later – I underwent a 3 hour surgery where Dr. M removed mass amounts of scar tissue and performed a c-section on my non-pregnant body.  The recovery was horrific and I was laid up for months… just enough downtime to trigger depression and drive yourself insane at the lack of guarantees and the thought of all this pain and suffering for nothing.

  

  

  

  Downtime will also allow you to do hefty research on IVF success rates and when I was finally ready to start up with the process again – I had decided on a clinic 50 miles away that had slightly better rates than Dr. M’s clinic did.  It was a leap of faith but my body was so tired and I couldn’t commit to anything less than the best and I believe the best is what I found.  I drove 90 miles round-trp every single day at 5:00am to Gurnee, IL – for 6 weeks – and did my last and final IVF cycle with Dr. S at Advanced Fertility Centers of Chicago.  Dr. S is the hero that brought us our sweet Tommy and our precious angels up above.

  

  

  I mentioned in a previous post that my therapist once made me write out a detailed timeline of the events that occurred in order to create Tommy (and his brothers).  If you think this blog post is long – you should see the timeline.  It is filled with conversations, decisions, lab reports, diagnostic findings, cycle updates, specialist referrals, and days at which our hearts broke the most.  It almost seems an injustice to summarize a fertility journey but it would take years to explain.  And this is only one example of what it takes to create a life.  I have met so many women along this journey who have it so much worse.  Women who are in the process of getting divorced because the weight of this journey destroyed their marriage.  Women who are left with no option to have a biological child of their own.  Families who have cashed in their 401Ks in order to pay for one more IVF cycle. Families who have spent years enduring the hardship of fertility treatment and are now spending thousands of dollars and years of time waiting on an adoption opportunity.  The stories are endless and each one is more complex than the next.

  Infertility is unfair… as is any other disease.  It is not natural – it is not beautiful – it is not fun.  It takes away the joy of creating life with your partner.  It turns an act of love into a science project.  It makes you hate your body and resent it’s failings.  It causes you to lose friends, feel hurt by your family, and pull away from the world.

  I sit here today saddened by what I’ve had to endure – beyond thankful for what it provided me – and insanely fearful of possibly re-entering that world should we ever chose to do so again.  Take the time this week to reach out to a friend / loved one who is going through infertility struggles and simple give them a hug.  Ask them if they would like to talk about their experiences and be open to what you hear.  Ignorance is not bliss and awareness is key.

   

   

  Posted in Uncategorized | 0 Comments

• I’m Sorry I Couldn’t Save You

  Posted at 2:51 am by saramarieobrien, on April 11, 2016

  A few weeks ago, this image popped up on my newsfeed and I was thrown into an instant spiral of emotions.

  

  (The image was posted from a community page I follow called A Bed For My Heart – for anyone that has experienced pregnancy loss, infant loss, child loss… run, don’t walk, to this page.  It’s amazing).

  I can make a simple assumption that it’s human nature to want to save someone, that no one in their right mind would ever chose to lose a loved one.. especially their own child.  I can make a verified assumption that along with loss of a child – often comes guilt.  The feeling that you could have done more, should have done more.   So while I read the sentence “I’m so sorry I couldn’t save you” and it speaks what my heart is screaming – it instantly brings me to one of the most horrific, traumatizing moments of our journey.  A moment when all of these assumptions were challenged and I was bullied at my absolute weakest.

  I’ve mentioned in previous posts that our twin boys suffered from a rare syndrome called Twin to Twin Transfusion Syndrome (TTTS).  In any multiple pregnancy where two or more babies share a placenta (often in the case of  identicals) – the babies run a risk of acquiring TTTS.   Oliver and Greyson were identical twins (one embryo split into two) and while they each had their own environment (amniotic sac), their umbilical cords connected to the same placenta (Tommy is their fraternal twin so he had his own amniotic sac and placenta) When the doctors first informed us of this set up (2 identical twins + 1 fraternal twin) we were warned of the 10-12% risk of our pregnancy suffering from TTTS and what would occur if it did happen.  Essentially an imbalance of blood supply occurs between the two babies – instead of the placenta dividing the blood supply and nutrition equally between the two babies, the blood vessels direct all the blood to one baby (recipient) and the other baby is deprived of all (donor).  If TTTS is caught early – there is an amazing technique called Fetal Laser Surgery where a doctor actually severs the connected blood vessels in hopes that each baby can maintain their own supply.  The surgery obviously comes with enormous risks and depending on the outcome, health of the baby, stage of TTTS – it is not always successful and often one or both twins will not survive.  Unfortunately, in the case of triplets when you have an ‘innocent bystander’ – the surgery is often too risky to even consider.  So – from our initial ‘welcome to the world of a triplet pregnancy’ consult with doctors, we were warned that God-forbid we fall on those rare 10-12% odds – the mortality rate of our boys would be about 90%.  Since there is nothing that causes TTTS (other than bad luck and a shared placenta) – we prayed that this wouldn’t be an issue for us and our doctors reassured us that from week 12 in our pregnancy they would start monitoring for any sort of imbalance between Oliver and Greyson.

  Mac and I joke now that we will never go to Vegas because odds haven’t worked in our favor.  At 23 weeks, our boys wound up in full Stage 4 Twin-to-Twin Transfusion with zero warning.  Oliver was the recipient – he was already in heart failure and his entire body was filled with excess fluid (hydrops).  When they first pulled up the ultrasound and scanned him – I didn’t recognize him as the same baby I saw a week prior.  There was a 1″ dark outline around every bone and organ.  His brain was surrounded by fluid.  His heart was surrounded by fluid.  His belly was big, round, and his organs just seemed to float within.  When they moved the ultrasound machine over to scan Greyson, he was the polar opposite.  He had zero amniotic fluid (they compare it to being covered in Saran wrap) – no fluid in his belly and a nearly invisible bladder.  They checked on Tommy – who was showing no signs of distress from his sick brothers – and they ran a million tests on me to see if there was a reason this all came on so quickly.  When all of my tests came back normal, the incredibly tough conversations began.  “What now?”

  I knew from my own research and hypochondriac questioning that I had zero options – but I wanted every single expert to tell me so.  Our MFM group (maternal fetal medicine) consisted of approximately 8 doctors and there was not a single doctor that didn’t visit us the first few days of our hospital admittance.  They were stumped at the severity of our case, the quick onset of the disorder, and the lack of solutions.  Our boys looked so sick via ultrasound that Dr. I and Dr. M didn’t think they would survive a day or two.  Surgery was off the table because of the state Oliver and Greyson were in and no one was willing to put Tommy at risk.  In a rational state of mind – this makes sense.  But my mind was far from rational.  I was a 23 week pregnant mom who had just had a baby shower for her three boys, spent the previous weekend setting up their nursery, stayed awake at night trying to figure out if my new triplet stroller would fit into the elevator at preschool when I would have to take Riley to and from school.  How was I going to sit in a hospital bed and just wait for my boys to die without attempting to save them?  How do I make that decision and then live with it?  I stayed wide awake for 3 days straight in the hospital agonizing over this and finally on the 4th day I was on a mission to conquer this battle.  Maybe my doctors weren’t top experts?  Maybe someone else out there in the world would say that my boys had a fighting chance?

  It was about 9pm when I logged onto Facebook from my hospital bed.  I held my phone under my covers in fear Mac would see the bright screen from my phone, wake up, and tell me to stop googling and torturing myself – that I needed to still take care of my mind and body – that I was still carrying three babies and needed to sleep.  I started searching for TTTS Support Groups on FB and found a few that seemed active.  I wrote a quick post on two of the pages begging for help – that I was a triplet pregnancy, with two boys in Stage 4 TTTS, and that my doctors were currently advising me to take a non-aggressive approach (aka: sit and wait) in hopes that our fraternal twin would survive.  The comments and feedback were almost instantaneous and I had a hard time keeping up with all the new information being thrown my way.  In summary – about ten different people directed me to a man named “Michael” who was one of the founders of a TTTS support network.  Before I knew it – I was receiving messages from Michael himself telling me that all three of my babies have a chance and that I need to get in touch with the #1 doctor who specializes in Fetal Laser Surgery because he will save my babies.  I sat up – yelled for Mac to wake up – and I filled him in on my late night FB conversations.  A minute later I get a message from Michael with Dr. Q’s (the #1 fetal laser surgeon) personal cell phone number and an urgent message to call him immediately as he’s expecting my call.  I threw my phone to Mac as it was already ringing Dr. Q’s line and sure enough, the doctor answers.  Mac fills him in on our scenario – and much to our dismay – without being able to review our medical files, ultrasounds, lab reports – he agreed to our doctors’ approach and said “there isn’t anything we can do”.   So there we had it – the God of all doctors in the world of TTTS said we were doing the right thing by not intervening and risking Tommy’s life.  That if we did the surgery – we would lose Oliver and Greyson based on their health alone and we were giving Tommy a lesser chance at life.  A no-win situation.  I logged back onto FB and wrote a quick update to my post – thanking everyone for their quick support and guidance in helping us locate Dr. Q, but explained that unfortunately this isn’t a situation that can be saved and Dr. Q believed our doctors were doing everything they could.  I fell asleep that night – feeling defeated but the tiniest bit proud of myself for putting up a fight, doing some extra due diligence and considering the odds.

  The next morning, around 5am, I awoke to an inbox full of Facebook messages from Michael.  I hurried to read in hopes that maybe he had some other unknown solution or superhero to connect me with.  But instead, what I read shook me to the core.

  “Sara – do you even want your children to live?  Or are you just choosing death for them?”

  “Sara – how dare you reach out to our group for support and then not choose to save your babies”

  “Sara – do you know how many people out there are so thankful for doctors like Dr. Q and people who can save their babies lives?  Do not ever use our resources when you don’t even want these babies”

  “Sara – do not ask for help again.  I’ve said my peace”.

  I pulled myself out of my bed, left the my hospital room (which I wasn’t allowed to do without the assistance of a nurse or Mac), walked down the hall to where the showers were, ran inside with just enough time to throw up in the toliet and laid on the floor in full nervous breakdown.  Shaking, screaming,  truly believing that a nurse would find me dead because I was convinced that I would never catch my breath again.  All of the thoughts I had tortured myself with – the judgement I placed on myself in a helpless situation – was now being told to me from a complete stranger.  Someone who didn’t know me – who had never been pregnant with triplets – who didn’t know how f’n hard I tried to become pregnant and stay pregnant – and for sure as hell didn’t know what absolute torture it was to be told that I have to sit and wait for two of my three babies to die inside me.  I stayed in that bathroom until my legs stopped tingling and I felt like I could physically walk back to my room and tell Mac what had just happened.  While it infuriated Mac to the point of tears – the harder part of it was I watched his face change just as my soul had.  There was now a greater sense of doubt and fear.  This bully was making us question our decisions – making us wonder if we would face more judgement from people we DID know – and most painfully, if we really were just letting our helpless sons die.

  Our team of doctors came in for their morning rounds and we filled them in on the nights’ events.  While they rolled their eyes and shook their heads in disgust at the statements Michael said – it was obvious to them that we needed reassurance and quickly.  They committed to getting us second opinions from all over the country and even one specialist abroad.  And that’s what they did.  The following day – a team of 9 came into our room and laid out all of the options they gathered from a TTTS specialist in Texas, one in California, and one in Belgium.  Not one doctor said that we would walk away from this pregnancy with three babies and every single doctor kept their priority on Tommy surviving.  A lot of the conversation was around the health of Greyson and Oliver – there was no way laser surgery would reverse their medical condition – but would it give one of them a chance to survive along with Tommy?  The general consensus was that neither would survive the laser surgery, and if one did – they would not survive life post-delivery.  The hardest part of these conversations was that I have never been afraid of a sick child.  I was never fearful of having a child with abnormalities, challenges, delays – I have always had a strong belief that if God intended me to raise a child that needed extra assistance that that would be my purpose on Earth.  If I were pregnant with just twins and in this situation, you better believe I would be on an operating table having laser surgery and fighting for whatever shot I had at saving my baby.  But now I’m being asked to make a completely selfish decision that will impact the health of my children.   If I were to have laser surgery and wind up in labor – the survival rate of a 23 week old baby is 10 – 30%.  The risk of blindness, deafness, cerebral palsy are extremely high.  So by having this surgery, I would be putting Tommy’s life in danger but potentially giving a fighting chance to Oliver and Greyson?  Once again – how does any person make this decision and feel good about it?  Our team of doctors sat in our room for over two hours going over the numbers, the outcomes, the hypotheticals, the what-ifs, and for majority of the conversation I felt like I was drowning.

  We asked for the doctors for a short break so we could discuss all the information provided and right after they stepped out – Mac went to go fill up his water bottle.  I am forever grateful for this moment because he happened to overhear the two top doctors talking about our situation and they both quietly agreed that if it were them in our shoes – they wouldn’t take on the risk of surgery and would proceed with the ‘sit and wait’ approach in hopes that Tommy would beat all odds and survive.  Mac interrupted their conversation and they all returned to my hospital room with a clear direction of what our plan needed to be.  Back to square one – we would continue to monitor the babies hearts until they stopped beating and pray that Tommy wouldn’t be affected by the change.  I was exhausted, defeated, and sad at the confirmed reality that there was nothing I could do to save their lives.

  Shortly after this torturous week I was able to sit down with my therapist and tell her about the chain of events.  Her jaw dropped to the floor when I told her of the messages I received from Michael and her first question was “you do believe that you’re not choosing death for your children, right?” and I couldn’t answer her honestly.  Did I know deep down that I wasn’t an evil person wishing harm upon my unborn child – of course.  But I was so shaken by these disturbing message that I had very quickly lost perspective and self defense.  She worked with me tirelessly – session after session – to remind me that I didn’t choose this, that I didn’t give up on my sons, that I would have done everything in my power to save them if I could.  To be honest, it’s still a work in progress.  It angers me to this day that some stranger could have such an affect on me – but he hit me at my lowest.  At a time when I needed someone to say “You’re doing everything you can.  I know how much you love your children and how much you love these babies.  I know you want to save them.  They know that” – I heard the opposite.  And I was in no position to be my own cheerleader.

  Even writing this blog gives me anxiety in fear of judgement,  but it’s just one more step in the process of healing.  I tell my two angels a million times a day how much I love them and I whisper that sad sentence…”I’m sorry I couldn’t save you” to them every single time I visit the cemetery.  I’m hopeful that in time, I will be rid of all guilt associated with losing my boys.  And I’m desperately awaiting the next time I cross paths with someone who needs a cheerleader instead of a bully – so I can fill them up with kindness, empathy, and love.   Every single human being deserves that.

   

   

   

   

  Posted in Infant Loss, TTTS, Uncategorized | 0 Comments | Tagged Bullies, Infant Loss, Triplet Pregnancy, Triplets, TTTS

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