Counting our love

There have been so many numbers involved in this entire process and we have literally been counting and measuring everything from the most literal to abstract ways.  Mary Grace was almost 31 weeks when she passed. I think it was 9 weeks total of this heartbreaking journey or 61 days.  She lived for 18 minutes.  She was 6 lbs, 4 ounces when she was born on a very special day, the 24th of April.  Her day is so significant to me because it is the same day of the month as my birthday September 24 and her sister is also the 24th…of August.   The boys in the family are 28’s- Tyler’s birthday is September 28 and William is December 28.  Mary Grace’s due date was June 28th, and she was going to be a planned c-section as my third, so it really made it less possible to keep her on the 24th, because we likely would have ended up delivering her before then.  
   Everything happened so fast this week or weekend (not sure how many days it’s been- lost count),  and it was very much about numbers.  We went from counting and measuring symptoms, labs, amounts of fluids- physical signs, not exactly knowing or expecting what might happen next.  The numbers that were being counted and measured suddenly began to spiral to scary levels and we found ourselves going from “hurry up and wait” status to just plain hurry.  I was rushed to surgery Friday night.  
   We never knew if we would get to meet Mary Grace, but we did.  They were some of the most amazing 18 minutes of our lives.  A common thing new parents think when they find out they are expecting a baby is along the lines of “oh my gosh, I will be in charge of another human being for the next 18 years!”   Then you realize it’s not just eighteen years that you have a child, it’s forever!   So eighteen minutes or eighteen years…whatever the difference, she is our forever daughter.
   Our whole family, who we have been counting on in every way for these past nine weeks, were here with us at the hospital.   Numbers continued to dominate this weekend, as Saturday I was taken to the ICU for 24 hours.  We are still at the hospital and have completely exhausted ourselves physically, mentally, emotionally, but as a family we have definitely counted on each other and we will just take it one day at a time to regain some strength and healing.  Thank you to all of of you who are out there thinking of us and caring for our family. 
  

I see you

This is my first blog post and update~Tyler

Last night our little baby Grace had to be taken out of her mommy because of complications it was causing for Meredith.  She passed peacefully while laying on her Mommy with zero pain which while I am extremely thankful for that, I’m not ready to thank God for much at this particular point in time.  We now are dealing with complications and Meredith is in the ICU. The doctors have told us it is just cautionary, and while it appears she’s feeling better, I am extremely skeptical of anything any doctor tells me.  We are doing our best to not freak out till there’s anything to freak out about and this morning I woke up to my little baby girl in her bassinet next to Meredith in her bed.  Now all my energy and desperation has turned to Meredith, but I want to share this about Grace.

I’ve never written a blog or been a good writer period, which would be a good reason for someone like me to never write a blog…but as I lay here Saturday morning looking at Grace lying next to Meredith, I see the the two most courageous women I’ve ever known.

While it brings tears to my eyes and pain I’ll next be able to describe, I am thankful I was able to tell my daughter “I see you.”  I was able to tell her that I’ve always seen her and she’s beautiful.  I see you coming home with us when Mommy’s better. I see you laying in your crib in your nursery while William stares at you in wonder and Avery tries to steal all your toys.  I hear you crying all night (something anyone who’s had a child eventually hates the sound of, but right now I would give any and every limb of body to hear).  I see William and Avery kissing you and hugging you and both of us telling them to be very gentle over and over again.  I see you crawling and then walking so fast because you want to play with Avery.  I see your beautiful dark hair and green eyes, and for some reason you can’t stand Frozen which is fine by me.  I see you being the calm one, but I also know that wouldn’t happen.  I saw Avery as being the calm one but her brother corrupted her, and Avery would get to you too.  I see you running and playing.  I see you loving soccer and I would have to spend a lot of time researching the rules of that really boring game, because I would be one of your coaches.  I see you and Avery fighting over the bathroom when you’re both older and ratting each other out to me (just like Meredith and her sister, Katharine, did when they were kids…or so I’ve been told).  I then see you and Avery  becoming the closest of friends and defining what sisterly love really is. Just like Meredith and her sister Katharine show me all me time with the love and support they have for each other.  I see William telling me your new boyfriend is not good and he wants to beat him up which I have to tell him that’s not going to happen, though in my mind I would like to do it myself.  More than anything I see you as part of our family which you are and will always be.

I know we’ll never be the same and while I try so hard to find anything positive about this, it doesn’t happen.  The only thing I find is the deepest regret, sadness, and helplessness that I couldn’t help you and that I will never see any of these things.  Coming to terms with that, accepting that, and coping with it is going to take us time.

I love you Meredith & little Grace- love, Tyler

  

Mirror, mirror

Mirror, mirror

     Tonight, I returned to the hospital under my doctor’s orders.  It appears that the sadness in my heart and the physical symptoms of my body are finally beginning to mirror those of sweet Baby Grace.  The condition actually is called “mirror syndrome”, and it’s related to preeclampsia.  I still don’t know when her day will be be, but it could possibly be very close now depending which way my health goes.   My symptoms this week have been pointing towards this, and we’ve been at a doctor’s office pretty much everyday this week.  
    Returning to the hospital tonight with bags packed and a huge pregnant belly suddenly reminded my of the joyful births of my son and daughter.  I was so excited and nervous but playing it cool the first time around, such a pro the second time.  I imagined this time would be practically a piece of cake.  Life is never what you expect, right.   Mary Grace will always be our daughter, and we don’t love her one ounce less for teaching us all these hard life lessons. 

 
  

Pregnant Prison

Pregnant Prison

  “Pregnant Prison” is a phrase I first heard  when I was locked up in the HRP (High Risk Pregnancy) ward.  I spent my first 5 or 6 days connected to a lot of machines and wires, so I could barely turn my body from back to side without someone running in the room to adjust everything.  Once I got off the monitors, I could “roam freely” but only within the steel doors of the ward, because otherwise an alarm somewhere in the hospital would go off if I went “off the grid” and they lost the input from my cardiac electrodes.  I took “laps”around the HRP ward sometimes to keep my bp and heart rate up and just to break up the afternoon, but I never saw another patient!  Almost every room was full, but there was never anyone out and about; they were all on bedrest.  I got pretty stir crazy, so when I was granted permission to attend the support group for moms just outside the confines of the locked steel doors-woo hoo, I was in!  
  A small circle of women arrived in a fleet of wheel chairs, and I could tell that some of these ladies were veterans to the ward…one had been here since Thanksgiving!  The vets really had it down, sporting bedazzled pajamas that read “mama” or wild yet cozy leggings and turbans that covered their “hospital hair” fashionably.  A sassy-mouthed little spit-fire rolled up in a caddy of a hospital bed.  For most of them, it was not their first time in “lock up”, and they had a lot of good info that I listened to with greedy ears…which of the hospital meals were edible, what you could order off menu, and other insider tips.  My drugs kicked in partway through the social outing, and I ended up losing my privilege as the only ambulatory guest at the party and was resigned to a wheel chair.  Bummer, but I think I held my own in the meeting regardless and managed to kick in a few good bits despite my “newcomer/short-term status” of only 8 days at the time.  
   Medically, for baby Grace, things took a turn for the worse; the mood and activity level in my hospital room changed.  A sign went up on my door, they quit cleaning the room.  No one came to dole out prenatal vitamins and the other meds administered went down to a “comfort level” after Grace’s condition was deemed terminal, completely untreatable.   After we double-triple-quadruple-etc checked our terrible diagnosis and outcome, we decided to leave.   Some of my best nurses came in to say goodbye and give me tearful hugs or supportive words.  I didn’t know when I would be back, but I was told it would be soon.   
    
During our discovery phase of those last few awful days in the hospital, we were overwhelmed emotionally.   We were at one point informed that there were “choices”, but the next day that was retracted and we were told that in this state there is only one way that this can go.  We didn’t really know how we felt about all of that, except that it added a new element to the word “pregnant prison” for me.  A small amount of research turned up the 2 out-of-state options, oh scratch that- one was a doctor that had been murdered in church 2 years ago by a pro-life extremist.   The other was a man who works behind 5 sheets of bullet proof glass, a barb wire fence and rides around with armed marshals.  Hmmmm, okay.  We were told our sweet girl had such low function in her heart, that survival through the next days or weeks would be unimaginable.  Thank goodness we did not have to make an unimaginably difficult choice like that.  I’m a mom, and it didn’t sound safe in more ways than one.  But it’s always good to know that you have “choices”, right girls?  I would just hate to think that a lawmaker somewhere who has no medical background and knows nothing of my personal health circumstance would be the one calling the shots when it comes to my baby and my body.  Surely these tragic circumstances are left to be decided between grief-stricken families and their informed medical teams, right?  Nope.  I just want to let you know that it is not the case.  When you are born with a uterus and the ability to become pregnant, you automatically surrender all decision-making to the lordly knowledgeable lawmakers of your state.  You will be imprisoned in one way or another: either sentenced to jail for taking matters into your own hands or sentenced to the physical pregnant state of your body regardless of a terminal diagnosis for your baby, regardless or your sanity and regardless of your health, until it becomes absolutely certain that you will die from your condition unless there is medical intervention.  Some lawmakers are pushing for more extreme versions of this scenario (Terry England http://thinkprogress.org/health/2012/03/12/442637/georgia-rep-compares-women-to-animals/ ) and feel that women, much like cows and pigs should also carry stillborn fetuses throughout duration of their pregnancy (even if it means infection and death to the mother)….you know how passionate pro-life advocates can be to “save the life” of a terminally ill or deceased baby. 
   For the record, the bill in GA is called HB 954, and I will point to it stamped on the belly of my shirt the next time a co-elevator passenger merrily tells me it won’t be much longer until my little bundle of joy arrives!  For my out-of-state or out-of-country friends, check your laws: they are probably not as different as you might assume.
  Baby Grace’ specific situation and the way it came about is very rare, and what we are left with is the kind of ethical/medical hypothetical situation that’s barely even dreamed up in debates.  I calculated the odds of our medical happenstance once and it was beyond 1 in 6 million, and might be less than that now.  I am in a new kind of pregnant prison now, one of solitude.  I belong nowhere.  I have become the new pariah of legal/ medical nightmares and social awkwardness.  If I call for a second opinion medically, I get the feeling no one would come near me with a ten foot pole (crank caller, crank caller).  The OB office wouldn’t squeeze me in one day when I called with quite alarming symptoms and no support group yet represents the loss or status that defines me.  This sucks.  I am so frustratingly physically limited by my swollen physical state, migraine headaches and other symptoms, that I have to rest most of the day so that I can muster up the energy for the things I enjoy most like being with my kids and family.  Guess I’m not feeling so upbeat or strong today, sorry guys šŸ˜¦ 

  

The painful path

  I never expected to find a lot of the things I’ve encountered in the path that I have travelled in my life.  I might describe myself as a free spirit, but with a bit more attention to the steps necessary to get there.  My dad has always said that I like my “ducks in a row”; and my husband and I probably connected initially on a big energy excitement level, but ultimately I became the “details person” out of default.  It’s ok with me because I like to have control of the details, so maybe I’m a contradictory control-freak-free spirit. Hah.  People also describe me as both soft spoken, but perhaps strongly opinionated or possessing leadership qualities.  Lastly, although I really hate the spotlight, I am comfortable writing and sharing about myself and my experiences, as terrible and nightmarish of an experience as it is.

  A little background: I wanted to be a child psychologist, so naturally I majored in psychology….worthless major that it is in terms of undergraduate study.  I realized quickly that it qualified me for few jobs and even fewer that paid actual money.  I did manage to get a paid position straight out of college, and although it wasn’t the best setup for me; it did introduce me to a world I never knew existed.  In a sense, it was exactly what I had always wanted to do as my vision of child psychology, and I took a lot of steps to become trained and more skilled to do the work.  I worked with families who had babies and toddlers who often had complicated medical histories and severe disabilities.  It’s heavy work, carrying the weight of other’s tragic circumstances.  So heavy in fact, that it can be isolating and lonely if you don’t build networks and supports in for yourself.  
     I’ve attended babies’ funerals and been the helpless person who had tears in my eyes and no adequate words to express how much I cared for the child and their family.  There are never any words.  There are actions, and sometimes I regrettably did not adequately express all the feelings in my heart for those families, but I have never forgotten them.  I think that those actions are what diffuses some of the pain, like a ripple in a pond….I learned that through the support of my colleagues and mentors.  I also noticed that my bond was strongest with the parents who let me share in the recognition of their child’s strength, perseverance and personality.   
  I would say that my professional experience and education give me insight, but by no means prepare me to face what we are going through.  I am not sure if I ever placed myself exactly in any of their shoes, but how could you possibly know what someone else feels like?  I never knew their whole stories.  I usually came in later; and what is kind of miraculous and human about it is that they were almost never living in the past.  Most of the families I helped were very much in the present moment and even celebrating their tiny wins.  It’s not about “fixing it” for someone, it’s about being there.
Sometimes all you can do is show up, support and listen if they want to talk.  I don’t always want to talk, but I also don’t want to be ignored either.  Everything is not normal, and it’s not really okay either.   We will go on because that is what you do when you love and are loved.   Please be patient with us while we fight for our sanity and allow for pieces of our hearts to break.  
   
  

    

Hope

“Hope is a good thing, maybe the best thing, and no good thing ever dies.”

-Andy Dufrane, Shawshank Redemption
    
    Hope is a theme that has come up a lot over our medical journey of the past 7 weeks.  We started with all the hope in the world, and then had to face some harsh realities.  I felt guilty at times after I lost my hope and explained the finality of our situation to family and friends, but hearing the “what ifs” from people who didn’t have all the information was frustrating and painful.  It felt more reassuring to prepare for what we did know and accept it.  We purchased a grave site, we designed a headstone, and we took time to think about all the ways that we could honor our soon to be lost baby with memories that we could collect in our short time with her.  As horrible as that is, it gave us a little view of the future.  I have always been someone who squirms a little bit when I cannot imagine the future, although I have taken many leaps in my life that showed no visions of the future.  I’m proud of all those moments that I leaped, and even prouder of where I landed.  
     I never could imagine my children before they were born, and I always said when asked if we were finding out the sex of the baby, “yes, there are enough surprises for me.”  Our first child was born with a full head of beautiful copper colored hair.  He looked like he had gone to L.A., and gotten it highlighted and styled for his birthday arrival.  He had a fiery little attitude to go with that gorgeous head of hair.  His birth was also not what I expected; it was a lot more arduous, long and medical than I expected for an uncomplicated pregnancy.  
  Our second child came to be in a more happy- go-lucky manner.  The first pregnancy was a more focused and calculated effort, while the second was not.  We had just moved from Northern California to Boston practically on a whim for my husband’s work, when we found out that she was going to be joining our family.  My head was still spinning from landing in a brand new city and living in a sea of boxes.  I never had time to imagine what she would be like, I was simply trying to get my bearings.  We lived in a 2 bedroom loft-like condo in “Southie”, and I was a little nervous about the logistics of making room for one more.  I set up for her by putting a bassinet attachment on my side of the bed and a place in every corner that I could put her down, so I would be able to handle a newborn and a 19.5 month old wild toddler.  As fate would have it, she was like her brother as a newborn in that she never let me put her down, so she lived in a pouch strapped to my chest for 2+ months.  I had a great little moms group that I met with frequently at local playgrounds and houses that were my lifeline during these times.  I accepted every offer of help from neighbors and friends that I got, and we survived those first couple of months as a family of four.
   For some reason, I decided to throw my husband a surprise party 1 month after our daughter was born, and I lured an unsuspecting (but very capable) babysitter over that we had used a several months ago.  I hadn’t even even told her that we had a new baby!!  When she arrived, I said, “our situation has changed…. we have 2 now!”  My instructions for the new refluxy infant were kind of vague, along the lines of, “we just met her and are still figuring her out, but you may just want to hold her most of the time we are gone.”  In my defense, I will say that I’m pretty sure we had already bathed and put our toddler to bed.  I guess we just needed a break so bad (laughing).  
   I have strayed pretty far from where I started out, thinking about hope…..Hope and perhaps control over your fate.   Many new parents feel frustrated by their lack of ability to control their new way of life and soon learn that everyday is a little bit about “letting go”.  (Please don’t break into song).  How do you learn to live with what you cannot control?  I guess you must just live it, and enjoy the parts that are enjoyable in the present…and make memories maybe.  I definitely don’t have all the answers to this one.  Sometimes it feels hard to keep on living, especially when there is no end in sight to the pain that you feel in your heart or body.  I think the little things become really important during these times, and are worth treasuring every time you encounter them.  I hope that didn’t sound too depressing…it’s hard to know what to hope for these days.
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New Life

New Life

You know how people say that when you die, your life flashes before your eyes?  Maybe it’s the part of me that is Grace or the fact that I’ve finally slowed my life down enough to reflect, but I have been flooded with memories and experiences lately.  I think it might also be because of the huge amount of people that have reached out to me and Tyler over the past 6+ weeks.  I’m pretty much terrible at getting back to people right now, but I did want to say how much we do appreciate the messages and cards.  I really enjoy these words of support and reminders of fun trips, travels, friends from the past and childhood memories.  
   Although we don’t get to watch as baby Gracie makes these lifetime memories, perhaps getting more in touch with our own pasts makes us feel more alive.  When I go through all the memories…aside from thinking, “wow that was forever ago, I’m old!”   I think about how many good people we know and how many new memories we can still make.  Tyler and I are constantly saying, “oh, I talked to this person today, and we should really re-connect with them.”
  We moved away from Atlanta for about ten years, and had a great experience and met so many people.  When we came home, it was kind of a whirlwind with a 23 month old and a 3 month old.  It was hectic, and we pretty much slid into home and scrambled to get it together for the next year or so.  Once we had gotten on our feet, we already had sort of a routine and weren’t as proactive about reaching out to our old friends….and everyone is always so busy!  
   Times like these are really truly awful to go through, and there really is no way around that.  Re-living a little bit of the past does bring out some new feelings of hope and a vision for the future.  It’s really easy to get caught up in the day-to-day and really miss out on some bigger picture stuff when you aren’t in the right frame of mind.  I don’t think there is anything more painful to your soul than losing a loved one, someone who should be in your everyday, someone that you saw in your future.  Remembering is a way that we honor people who have passed away and the memories we have of them; but what if most or all of the memories haven’t been made yet?  What if you are mourning the loss of a future life?  Our only physical memories to look forward to with her are bound to be very painful, and that’s a tough thing to face.   
   When I have the energy for anger or making plans, I hope I can remember to go forward with force and go after the things that bring me joy.  Maybe I get to keep part of her tough-girl fighter spirit in me always.   What I’ve mostly shared here may be reflective and more on the “beautiful” side, but there’s plenty of the opposite too!  I may share or I might save it for my fighter-Grace jet pack to get me going again when I need a turbo boost.  There’s a whole lot of spit-fire coming from this one, and the world should know about this girl!
“We must lose ourselves in order to find ourselves; thus loss itself is gain.”
 ~ Meher Baba