There's No Place Like Home

The day after Ellis left us we took Arlo home.  We spent the day making arrangements.  We made arrangements for Ellis with the funeral home and we made arrangements for Arlo's discharge from the NICU.  The day you bring your baby home from the hospital is supposed to be filled with Joy and it was, but, it was also filled with tears and Sadness.  It has been almost a 2 months since Ellis left us but the mix of Joy and Sadness remains.

When I say we took Arlo home I don't really mean we took him to our home, either of them.  For about a month we stayed in NYC.  I was still not recovered from the complications of HELLP syndrome and wanted to stay close to the hospital.  We, also, wanted to be close to Arlo's pediatrician.  So we made ourselves at Home in an apartment on the upper west side.  During this month Jason and Arlo and I (and Tashi, too) spent our days and nights getting to know each other. During this month we spent our days and nights falling in love with our sweet baby Arlo. I would spend hours staring at his tiny nose and fingers.  I drank him in, every bit of him.  We spent our days and nights mending our broken hearts.  We found ourselves talking and crying and remembering moments we had with our beautiful baby Ellis.  Sometimes when Jason and Arlo were sleeping I'd remember quiet moments I shared with Ellis, his hand resting on my chest while he slept skin to skin or his tiny mouth taking in formula as I fed him from a syringe, his eyes alert and looking up at me. I'd also think about those last moments we had together as I sat holding him in my arms and watched him take his last breath and weep quietly.  I remember thinking, "be present, nothing else matters more than this moment, right now." Being present, truly present is something, among many other things, Ellis taught me.  During this month we spent our days and nights healing, physically and emotionally, remembering and just being together.  I will be forever grateful for the time we had in that apartment in NYC.  It is where Jason and Arlo and I became a family.

Six weeks after we had left, we packed up all of our things and piled into my dad's mini-van and made our way back to Long Island feeling overwhelmed by the uncertainty that lay ahead.  When we arrived at my aunt's house I was reminded why we left our cozy little apartment on the upper west side.  My mom and aunt had arranged for my sisters and Arlo's cousins to come over and finally meet him.  In fact, the three weeks we spent there were filled with visits from loved ones I just don't get to see living overseas.  My Aunt Peggy made a special trip back to Long Island from Colorado just to come see us for an afternoon.  Growing up I always admired her and my Uncle Alvin.  They are the ones that planted to travel bug in me.  I loved visiting their home and looking at all the things they collected from around the world.  I remember thinking that someday I'd travel the world just like they did, and I do, and so will Arlo.  My sisters and mom planned a lovely "Welcome to the World" party for Arlo.  It was the baby shower I never had.  I was so touched by the work they put into it and I loved getting to show off my adorable baby boy to friends and family.  The best part of that day was that my Aunt Debbie flew from florida in a snowstorm in to surprise me.  She had done this to my once before three and a half years earlier when she showed up at the wedding dress boutique, both times I cried.  A few days before we left another aunt came to visit.  This time it was my Aunt Margaret.  She was unable to make it to the party because she had gotten 30 inches of snow 2 days before out by her and the Long Island Expressway was closed.  She drove 2 hours to come meet Arlo and share her story of loss.  Close to 40 years ago now she lost a baby who had a heart defect.  His name was Michael.  He is buried next to my twin sister Elizabeth who Ellis is named after.  Hearing Aunt Margaret's story of loss and healing was a gift.  I admire her strength and feel a strong connection to her.  I am so blessed to be surrounded by such strong women in my life, my sisters, my mother and my aunts.  This time at home has strengthened bonds that had become frayed by time and distance.  I have Ellis to thank for that.

Exactly two months after Ellis and Arlo were born we said our good-bye and boarded a plane headed back to India.  With us we had, 1 baby, 1 car seat, 1 dog, 1 crate, 4 checked luggage, 3 carry-ons, 1 diaper bag and 2 bags of duty free. About 20 hours after our departure we arrived HOME.  Bestie and her husbo were there to greet us with signs and hugs and helping hands.  We've been back about a week now and I can't express how good it feels to be back.  The love and support from our community is astounding.  

After months of heartbreak and uncertainty I finally feel like things are beginning to settle. I would have said that things are beginning to feel normal again but that's not really true.  Things are different now, we are different now.  There is a new normal, I suppose, one where the Joy and Sadness surround us and color everything, one where we will always feel as though something is missing while feeling so very blessed with what we have.  Forever changed, I am here at home drinking in every moment of motherhood, feeling at peace.  And so, the journey continues...

15 Days

We had fifteen joy filled days with Ellis.  We had fifteen days of forgetting to be sad and of cuddles and smiles.  We had fifteen days of grannies and aunties and pop-pops.  It was so much more than we could have ever imagined that we'd have.  To celebrate those fifteen days here are fifteen photos.

A Birth Story (The Short Version)

A couple weeks ago I woke up with a kink in my neck.  Throughout the day it got progressively worse so I called my OB.  She suggested that I take some tylenol and keep a heating pad on it which I did for two days only to have the pain continue to get progressively worse.  I called the OB again and it was suggested that I go to a local ER and get some percocet which I did.  I used it sparingly because I didn't want to drug the babies but the pain persisted.  Then after about a week of suffering I woke up in the middle of the night with stomach cramps.  I began vomiting and didn't stop for about 12 hours.  I actually hesitated calling the OB again but I just knew something was not right. Jason and I drove into the hospital on a rainy Monday night thinking that I'd be given some IV fluids and something for the nausea and sent on my way.  Instead, I was told that I had a very severe form of preeclampsia called HELLP Syndrome and that the babies needed to be delivered immediately.  I was just 34 weeks.  We had nothing packed and had only what we wore into the city.  About an hour later Arlo John Sullivan Coleman was delivered weighing in at 4 pounds 11 ounces and just moments later Ellis Cameron Sullivan Coleman was born weighing in at 3 pounds 4 ounces.  Surprisingly Ellis was doing just fine despite his size and hypo plastic left heart and joined my in my room shortly after I was sewn back up.  Arlo needed to be monitored a bit more closely in the NICU because he was having a tough time breathing on his own. Thirty-six hours later I was feeling a lot better and was sent to the maternity ward with Ellis.  Jason had been able to see Arlo several times and assured me that he was doing just fine in the NICU.  He just needed to work on breathing a bit.   After lots of visitors that second day Jason and I send everyone home to settle in for the night with Ellis.  My spinal was starting to wear off completely and I was beginning to feel some pain.  That pain that I had had for two week before the c-section had returned and it got progressively worse just as it had before except this time it was very rapid and much more severe than it had been.  After hours of trying to tell nurses that I thought something was wrong I was finally seen by someone who decided to do a quick ultrasound of my abdomen.  Suddenly things began to move very quickly and frantically.  They took Ellis away to the NICU, sent me upstairs to get a proper ultrasound and had several liver specialists to come talk to me.  It was, by far, the most painful thing I've ever experienced.  I was rushed off to the ICU for close monitoring and further tests.  As it turns out I have a very rare and life threatening complication of HELLP Syndrome.  I have a large hematoma on my liver.  So here we are eight days after the babies were born, eight days into my what is to be a very long recovery.  Arlo is still in the NICU and will be for a while.  He's breathing well and is now learning how to eat.  Ellis is still with us.  He's a little angel.  If we hadn't come back for him I don't know what would have happened.  Here we are eight days after the babies were born savoring every moment with them, loving them, taking it one step at a time.

Arlo John and Ellis Cameron

   

On Being Honest

I'm not a natural writer.  Most of my posts require me to dig deep.  In order to write effectively I must allow myself to open up and pour my heart and soul onto the page.  I write and rewrite until I feel that my words are conveying the message that my heart whispers to me.  It takes time and patience and trust.  Often it is difficult for me but it is always worth the effort.  I do it because it helps me heal.  I do it because I believe in the power of connection.  My beliefs, mine and Jason's, are above all, what define us.  It's the one thing that, no matter what, make us who we are.  This journey has helped us to strengthen our beliefs.  It has helped us to define the kind of people we want to be for ourselves, each other and to our children.

One of the things that Jason and I believe in and value is honesty.  From the beginning of this journey we have been honest about what we are going through.  We have been honest with each other, our friends and colleagues and with ourselves even when it wasn't most convenient.  When our insurance company required us to disclose any fertility treatments used to achieve this pregnancy we were honest knowing that it would mean the pregnancy would not be covered according to their policy.  Prenatal care in India is very affordable and although unfair we accepted it and moved on.  Now that we are in the US and in need of some very specialized health care we are facing tens of thousands worth of hospital bills complicating and already complicated situation.  This week we learned of a kind of medicaid for pregnant women.  It was suggested to us that we apply so on Monday we spent hours waiting to see someone that would tell us if we were eligible to apply.  As we sat there among other women and families also waiting to apply Jason and I couldn't help but wonder if we were doing the right thing.  Having some financial assistance would really help alleviate a lot of the stress we are facing right now but we certainly don't feel entitled to it.  We wondered if we would be somehow taking something that someone else needed much more than us.  We are so very blessed in so many ways.  In the end, we answered all their questions with the utmost honesty because that's the only way we know how to be.  We explained our situation in the hopes that maybe we are eligible for some assistance but knowing we probably won't get it.  We won't know for another 4-6 weeks so until then we must proceed paying out of pocket.  If we are eligible and do receive assistance we will find a way to give back and help other families in need.

When all is said and done our savings will probably be depleted and our bank account empty but we will be rich in our hearts.  We will come out the other end of this with integrity and we will be able to share this defining event in our life with our children.

This is who we are, Babies.

This is what we believe.  

On Being Thankful

This is something that I normally live and breathe and, yet, here I am on the day set aside for giving thanks unable to.  All I feel is sadness just like those first few days after we received the diagnosis. I feel so unlike myself.  I was able to hang onto a few moments of joy in the past month.  I can say that I am thankful for those moments.  I am.  But.  All that seems to be gone now.

Now I feel as though I'm lost in a world that's not my own.  Because my parents were left homeless from hurricane Sandy we are now all at my Aunt Pat's house. And yes, I can say that I am thankful for the roof over our head and a bed to sleep in. I am.  But.  We are all so on top of each other, my aunt and uncle and cousins and my mom and dad.  I feel so unlike myself because the soft protective space I keep around myself is gone.

I'm hanging onto the hope that we'll adjust, Jason and Tashi and me.  We're resilient.  That's another thing that I am thankful for. I am. But. I have cried myself to sleep every night I've been here, I've cried silently each morning I've woken up here and throughout the day big hot tears come without warning.

Today, as I try to get through this day, I have to find something that I'm thankful for that doesn't have a but.  Maybe it will be a collection of small things.  Maybe it will something bigger.

Today I need to hang onto a shred of myself, that part of me that knows how incredibly blessed I am.

Update: Black Friday

No, no I did not go shopping last night and I plan to stay in my jammies as long as I can today.  And, yes, I am thankful for that.  I am.

The black cloud has lifted.  And that I am also thankful for.

Yesterday was a really nice day.  The weather was beautiful.  I haven't seen blue skies like that since this summer.  Tashi (and Jason) had a great time running around with all the kids in the back yard.  I enjoyed seeing my nieces and nephews.  They are all getting so big and have such distinct personalities.   I am looking forward to spending more time with all of them.  I am thankful that I am here and can do that.  They are treasures.

The thing is, as my wonderful husband pointed out, I am still incredibly blessed and have so much to be thankful for and although those things feel so far away they are not because I carry them with me in my heart.  

Farewell

I feel like I'm standing on the edge of a cliff cold wind blowing in my face Jason's hand in mine with the warmth of the sun on our backs.

I'm so scared of what we are facing.  I want to stay right here.  I want these babies to stay right where they are, safe and healthy.  I want to stay in this place where we're joyful.

Tim Steadman Photography

Tim Steadman Photography

Tim Steadman Photography 

   

Tonight we leave the comfort of our home and our community and head off into the unknown.  

For the past month we have been living somewhere in between.  We have been focusing all of our energy into where we are now, surrounded by people we love, doing what we love, being pregnant.  We have so much to be thankful for, so much to celebrate.  

Tonight we say good-bye to our Delhi family.  

Many of our nearest and dearest.

Our beloved Yangzom

We have been so overwhelmed by the outpouring of love and support we have received from everyone here in Delhi.  We love you all so whole heartedly.  

Thank you. 

Thank you for your kind words.  Thank you for your prayers. Thank you for your warm embraces.  Thank you for letting us be safe and comfortable in this space.  

Because of you we leave here with our hearts full, full of love and peace.  Because of you we leave here lifted up. Because of you we leave here strong.

Tonight, with love and light we say farewell.

Life In the Now

For the last few weeks Jason and I have both been in a weird place.  Some days are OK and others are not.  Every day we do our best, whatever that may be.  On Friday, I had been invited to join a few dear friends and colleagues for a final happy hour before my departure.  It was just what I needed.  I belly laughed for the first time in a long long time.  In fact, I laughed so hard that I actually peed myself a little.  

As I was sitting there thinking about how my next blog post would be about holding onto these moments of joy, about being so grateful to be surrounded by such incredible people Jason was experiencing something that was equally profound, yet in another way entirely.  He shared his experience with me  later that night.  And now I share it with you.  

**This is my first guest post, enjoy.  jason**

Living in New Delhi, and teaching where we do, we are often given the
opportunities to do and participate in amazing things.  One of those
opportunities presented itself on Friday when we were visited by His
Holiness the Gyalwa Karmapa.  He is the head of the Karma Kagyu, one
the major schools of Tibetan Buddhism. This is the third time His
Holiness has visited our school and I've been fortunate to see him
speak twice.

Friday was a rough day for me.  Our impending departure is creeping up
on us, my pile of work seems to be increasing instead of getting done,
I was tired and I was having a "sad day." In fact, it was the kind of
day that people don't expect me to have. I surprised three colleagues
when they asked, "How are you?," and I gave them an answer they didn't
expect. "I'm sad today."  Their reactions varied from respectful
silence, to sympathetic smiles and hugs. I suppose that's why I went
to see the Karmapa that day.  The primary message of Buddhism is peace
and in particular, finding peace in yourself. If nothing else that
day, I was hoping to absorb some positive vibes.  And then I started
thinking.

I had asked a question about the increase of self-immolations among
Tibetan protesters and the response was that these protests while
courageous may be misguided because all life is precious, especially
those of the  precious few Tibetans. Needless to say, this gave me
pause relative to the choices we are facing.

While my mind was racing, the Karmapa had been asked another question
and was talking about how his most important job is to eliminate
suffering in the world.  Up until that point I was trying to frame a
question about preparing peace in yourself in the face of one of
life's most traumatic circumstances, but then suddenly, I didn't have
to. My mind calmed, my sadness left me and I had found what I didn't
know I was looking for.  These two comments by a Buddhist monk had
neatly summarized the decisions Kate and I have been struggling with.
We have decided to celebrate the lives of our babies, and minimize
their suffering. Then, another question spurred the third framing
thought for the day. The Karmapa was talking about the importance of
living in the moment and appreciating the "now."

I finished listening to the talk and I was invited to dinner with the
Karmapa. At dinner, we had informal discussions where His Holiness
alternated between offering advice, describing his life and keeping us
all laughing by cracking jokes. Grateful for that moment in the "now,"
I looked around the room and saw my school director, who has
graciously arranged for us to return home, my principal and my
assistant principal who have been amazingly supportive and
understanding and a room full of friends who have pledged to do
anything to help us. Anything - including giving us space, sympathy,
hugs and the peace that will enable us to know that we're doing the
right thing for our family.