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.
 Edit  

 

   

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
  

A beautiful heart; A broken heart

  


Children can have a way of saying the most profound things at the perfect moments; whether it is a comic relief or just simple and beautiful, sometimes it’s just so right.  When we first told our two and four year old that they would be getting a baby sister, I would say they were probably more interested in what was for dessert than this news.  However, later as things moved along Little Wildman would proudly say, “my mommy has a baby in her belly…and I have a robot in my tummy!” He kissed my belly and said sweet things that melted my heart.   

   After my hospital stay I returned home sporting an even larger tummy due to the time that had passed and the extra fluids that are present along with the diagnosis we received of fetal heart failure.  My sweet little Wildman looked at me as he was getting into the tub one night and said, “your belly is FULL, mommy!”  He also continued on to say something about the baby as he entered the tub, and I knew that I needed to say something to him as he knew that plenty of unusual things had been happening in our family and our routines were completely changed.   I had consulted the pastor at our preschool already, knowing that I needed to be prepared in some way for this conversation to start.  I followed the advice and kept it rather simple and functional: I told him, ” about the baby….the baby is is very sick, and her heart is not very strong.” He looked perplexed and said, “her heart is broken?”
“Well, yes- her heart is broken or not working like it needs to, but mommy’s heart is fine.  Your heart is working, and daddy’s heart….sister’s heart, etc,etc.”.   He was quiet again and put his hands over his heart and said, “I have no heart.”  “You do have a heart sweet boy!  You have the biggest heart and it is so strong, because you love so many people and they love you,” naming off people in his life that are present and full of love for our kids.  He splashed around a little more and then said, “I have a Transformer heart” with kind of a muscle pose…so we moved on that night to other topics of four year old interest.
   Talking to a child about such a serious topic is challenging and tricky, but he clearly understands that something is going on.  I imagine we will continue to revisit this topic in little understandable chunks, and I may need a lifetime to process it myself.  One thing we know is that we would like for our children to know about their sister and for it to have a positive impact on their lives in some way.   I imagine an idealistic version of them playing on a sunny day and releasing purple butterflies in honor of their sweet little sis.  We are so very fortunate to have these  sweet and joyful children in our lives, and I don’t want this experience to bring them deep sadness or worry.   I believe that Grace can teach her family and those who learn about our story a deeper understanding of how important kindness is.
    

Time

Time.       April 2, 2015

The weeks have literally flown by although it also seems like we are standing still gasping for another breath.  Since learning of our baby Grace’s serious and terminal heart condition, we have travelled along a path that began with: shock, hopeful/ nervous positivity, devastation, denial, horror, despair, bargaining, acceptance etc.  It’s not a linear path, and once you go through a phase it doesn’t mean that you won’t revisit it many times.  When we made the decision to come home from the hospital almost a month ago, it was predicted that our timeline would be very short- days.  Those days have turned into weeks, and now the weeks are almost a month!  Going back to the doctors’ offices can be painful as we only hear the words of good people telling us terrible things.  Many of our doctors have tears in their eyes when they wish us well, but are completely unable to do anything for us.  
Good god she is the toughest little fighter, and it makes me angry that the world will never see her strength.  Her diagnosis is 100% fatal and the complications that have continued throughout her heart failure are also 100% fatal on their own.  Even if a tiny heart was available for the heart transplant she would need, she would be too sick and fragile to receive it. I am the only reason she is alive.  There are no safe and legal options to bring her peace, and I am sorry to say that the greatest miracle would be for her to never feel pain but only know love and warmth. 
   I do cling to words that I read or that bring me comfort right now.  So many of you have reached into your souls and offered profound support and empathy.  I do feel that by sharing some of the burden of our load, we feel a surge of strength.  So thank you for listening to our story or reading it here, and thank you for any tear you may have shed for baby Grace.  We ARE her loving family, and we WANTED her here with us.  These certainly are the moments that break God’s heart.

There comes a time when the world gets quiet and the only thing left is your own heart. So you’d better learn the sound of it. Otherwise you’ll never understand what it’s saying.

An update 2 weeks after we left the hospital

An update from March 16, 2015

Dear friends and family,
    We wanted to thank you guys for your support during our difficult time.  We appreciate all the meals, help, cards, phone calls/texts etc and for your patience as we pull ourselves together to take one step at a time.
  I’ve been home from the hospital for 10 days after the 12 days I was there since the start of everything, and that has helped us start to feel a little better although we know that some of the hardest times are still to come.  We continue to followup with a lot of doctors, and nothing has changed for the positive.  There are a lot of supports out there for people who find themselves in similar situations and we have connected with some of those groups that can be there for us when the time comes.  Tyler and I have faced some of the most gut-wrenching decisions we have ever had to make as we plan to lose a child, something no one ever wants to think of…ever.  We already love her so much and our hearts break that we never will have the chance to know her better, but to us Mary “Grace” is real and will always be a part of our family. 
  We sometimes feel positive enough to see a glimmer of the future when we may start our healing process.  In the meantime, we welcome you to share about your lives and continue to reach out to us. 
Thank you all so much and we love you,
Meredith & Tyler 

Where is My Mind?

March 27, 2015

Where is my Mind these days?  I honestly couldn’t tell you.  Sometimes it’s hanging in there pretty well and other times….well you can imagine.  I remembered this song, and there are two versions of it: the Pixies and Sunday Girl.  The first is more conducive to say screaming your head off and hacking at a wall of jungle & the second is quite beautiful.  

I found the Pixies version edited with Fight Club images and it reminds me of Tyler and myself in college when we were obsessed with that movie. Okay… who am I kidding #1 is Tyler’s version.  Life seemed so raw and emotional back then, almost fifteen years ago.  Since we’ve grown together, it seems like we did in fact settle down and become more tamed, responsible and reliant on routines.  This experience has changed us forever, and perhaps thrown us back into the most raw emotion we’ve ever yet experienced of love and anger.  We don’t have “the luxury” of indulging in our darkest emotions the way we might’ve back in those days because there is so much more that we have now.  We have two of the happiest and most uplifting children that we want to love and protect and we are aware of the love and support that we feel from our family and friends.

#1: for Tyler (Fight Club ferocity) – best played LOUD! https://www.youtube.com/embed/ufERJEdcfAY?autoplay=1

#2: for Me (I never heard this version until the other day when it played on my episode of the Good Wife)

https://www.youtube.com/embed/m–lZP1c28g?autoplay=1

“Where is My Mind”
Oh – stop
With your feet on the air and your head on the ground
Try this trick and spin it, yeah
Your head will collapse
But there’s nothing in it
And you’ll ask yourself
Where is my mind? [3x]
Way out in the water
See it swimmin’
I was swimmin’ in the Caribbean
Animals were hiding behind the rocks
Except the little fish
But they told me, he swears
Tryin’ to talk to me, to me, to me.
Where is my mind? [3x]
Way out in the water
See it swimmin’
With your feet on the air and your head on the ground
Try this trick and spin it, yeah
Your head will collapse
If there’s nothing in it
And you’ll ask yourself
Where is my mind? [3x]
Way out in the water
See it swimmin’
Oh
With your feet on the air and your head on the ground
Oh
Try this trick and spin it, oh oh
 

 

Living with Grace

Living with Grace

March 6, 2015

My dear friends,

I truly do not even know how to say these words, but as you might know Tyler and I and our families are amidst the darkest days we have encountered in our lives.  After a routine doctor visit almost two weeks ago, we were informed of our baby girl’s dangerously high heart rate.  I was sent to the hospital immediately (where I stayed for almost two weeks).  The condition of our baby’s heart was rare (>1%), but considered treatable with drugs.  I pushed myself to the limits physically taking cocktails of cardiac drugs that are designed to slow the heart rate (both baby’s and mine).  After 9 grueling days with an expansive expert medical team, we finally got her heart rate under control and converted to a normal range; and what was expected next was that an almost immediate improvement would be seen in the strength of her heart and ability to pump out the accumulated back up of fluids.      Unfortunately the weakened state of her heart did not improve and even worsened over the next 24-48 hours, leading the doctor to the conclusion that it was actually her weak heart that caused the SVT/ arrhythmia.    This is an even more serious and truly rare condition, cardiomyopathy  that cannot be treated In an unborn baby.  We were told that our baby girl will not survive under any conditions.  She may live another few days, weeks, perhaps even months, but would not survive through the pregnancy or outside of the womb.  If a miracle occurred, she would live to her birthday only to endure the most invasive of medical procedures to attempt to sustain her life (heart transplant, breathing tubes, feeding tubes etc).   I am 24 weeks pregnant.  We have no choice, but to wait day by day as her heart continues to beat until one day when it doesn’t, at which time We will return to the hospital to deliver her.

 

We are of course sick, devastated and feel completely broken.  We are struggling to digest this reality and attempting to live our lives under the heaviness we feel in our hearts.  It’s a minute by minute, hour by hour, day by day situation.  Our families have been tremendously supportive, and each time we share our sad news with a close friend- we in someway feel human and connected for a brief moment.  Tyler and I are leaning on each other in a way that I never even knew we were capable of, and we find some strength to carry on together as we look to our happy, healthy children.  We treasure these little joys even more than we could have ever have imagined, and know that they are such a true blessing to us.

 

We thank you for keeping us in your thoughts and prayers during these dark, dark days.

 

Meredith