Stitch by stitch

I want to follow up from a piece I had written recently that has been spreading like wildfire through the world. I want to take some time to really think about what was asked of me, and to reflect on my guilt that stemmed from that piece.

A few months back a beautiful soul whom I had met through my writing contacted me out of the blue. She had asked me if I could join her on a special project to help others find healing, to help them find the light in the tunnel. I agreed and didn’t think much of it again. When it came time to write I whipped out a piece full of truth, but it was unlike my style, it lacked my true insights. I wrote about how I have used yoga and love to find my own healing, but I gave no thought as to how that might sound to someone who is so deep in pain that what I suggest seems laughable. I was a disservice to my community, and for that I am sorry. 

Bear with me, this will be a long one, but I think we can all agree it’s been long over due.

I took a very long break from writing, I don’t know exactly how the decision came about, I think it was just that everytime I sat down to write, it felt forced, and I didn’t want to revisit the memories unnaturally. This project has stirred emotions inside of me, some that I have kept hidden for so long that even I forgot they were once there. It has made me truly think about what has happened in the last 2 years. 

I think back to this day 2 years ago and how naive I was; I didn’t know the storm that was coming, I could only see the rain that was falling at the time. I regret that weight gain, baby shower ideas and nursery decorations were my main stress.  Strangely, I don’t wish I knew earlier. 

Fighting for your child’s life seems like a natural reaction, but what do you do if you’re really faced with that as your only option? What do you do when your whole world is shattering around you and you’re trying so hard to catch the shards and hold them in place with your bloody hands? Your heart is screaming so loud that you cover your ears to protect yourself from the sounds, only to realize the piercing tone is inside. There is no escape. Your body feels like it will collapse at any second if you even dare to move another muscle; breathing becomes painful. You stare at the swollen abdomen below you, wondering how your body could betray you so badly; how could God betray you? You think about all the wrong you’ve done, wondering if this is your punishment; surely this is an excessive punishment for lying about having change to the bum who reeked of stale cheap vodka. You know you’re not perfect, but you try hard to be a good person, how could this possibly be real? You go to sleep hoping the nightmare will end. It didn’t. 

I spent the next 15 weeks fighting. Researching until my eyes were as dry as the Saharah, pouring through articles toggling between the medical journals and Google just so that I could understand what the hell I was looking at. I studied ultrasounds and femur measurements. I tore through every “See Also” of every skeletal diagnosis in search of hope only to come up with the same 2 answers, neither of them were good. I gathered an army of love and support, a luxury I so greatly needed to keep my head on straight. That’s when trouble began. The words were no longer loving, and the questions became accusations. I often found myself crying alone at night. That didn’t matter though, I had someone so much more important counting on me to stay calm. I fought on, my army by my side and a tiny girl with the kick that would put Jackie Chan to shame. 

Just because something is going to end before you want it to does not mean you should mourn it before it’s gone.

– Letters for my Ruby,  July 2014

 24 hours is a long time when you know it’s coming any minute. 48 hours felt like a week. It’s only fair to say that 16 days felt like an lifetime, but no one ever thinks that 16 days could  be a life time. The day my daughter was born, I was reborn. The day after she died the new seeds of life were planted into the depths of my soul. Those months of depression, the nights spent crying, right down to the planned suicide; that was the shell cracking. December 2014, the insides came out; I bared my soul for all to see. I declared publicly to find meaning, to find healing, to rebirth myself. I could not, and positively would not allow the darkness of my grief to consume what little light I had left. One little step at a time I began to find my way out, desperately seeking the sunlight. 

 That red glow in those dark tunnels kept me searching for the light. I would not let my daughter see me give up, even if she wasn’t with me I hoped she was still watching (that is if she wasn’t too busy being spoiled rotten by her family there). If I was forced to live without her, I wanted to make sure I really lived. 

Living without my Ruby doesn’t mean that I forgot she was here, it doesn’t mean I forgot about those 36 weeks with her. It just means that I am not going to waste the rest of my life sitting in the darkness when my sweet little girl is dancing in the sunlight. I’m going to dance with her, I’m going to laugh with her. I’m going to live my life out with her memory forever stitched into my heart. 

I never saw the storm coming, but I’ll be damned if I’m not going to go dance in the rain and keep looking for the rainbow. 
   
 

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July 18th, 2014- The story I’ve never told.

My beautiful baby girl,

Please forgive me, I’m shaking as I write this letter to you today.

One year ago today, you flew away on the wings of an angel, and from what I am told, this angel was a goofy, smiling guy who would make you laugh the whole trip to your final destination. I never did thank him for that.

I want to tell you the story of your last day here. I have been playing that day over and over in my mind for the last year; somehow it was the the most beautiful and most painful day of my life.

We stayed at the hospital the night before, i didn’t want to leave. I held you into the wee hours of the night, never wanting to let go. I tried so very hard to memorize every curve of your face, I wanted to remember how the weight of your body felt in the crook of my arm, how the warmth of your skin felt on mine. I told you I loved you a million times. Just as i had started to cry again, a single tear of mine had fallen onto your cheek. You opened your little eyes, so bright and full of calm peace, and I swear you smiled. I smiled through my tears, I didn’t want you to be afraid.

The next morning I woke around 6AM, I ran right to your bedside. I cried some more, I’m sorry, I really couldn’t help it. I went to go meet Aunt Tay, who insisted on coffee and food. I couldn’t stand being away from you for much longer, but at the same time I selfishly begged to not have to make the decision that needed to be made. How could I live with myself knowing that I told the doctors and nurses to stop? How could I stop fighting this battle, even though I knew we would never win? I took down the sides of your bed, pulled up a chair and i rested my head next to you and cried. I begged you to please just let go, I told you it was okay, and that I loved you so very much. Even when I thought I wasn’t crying anymore, a nurse would walk by and place another box of tissue next to my head. I just wanted this all to be over, I didn’t want you to have to fight anymore. I kept thinking that  was killing you. I know now that obviously that is not true, but that’s how it felt to me. I made some pathetic claim that i was going to get “real coffee” and took off, where I was going to go, I have no idea but I was running. If I wasn’t there, you couldn’t die. I ran down the stairs and out of the nearest door I could find and down the street, I am so sorry. I called a good friend with every intention of making them come get me, when they didn’t answer I realized how crazy my plan was. You were not going to be able to stay no matter what and I was wasting time running when I should be at your side soaking in every moment I could with you. When I returned to your side, I muttered some lame excuse how I couldn’t find a coffee shop nearby, and took my post next to your bed once more. I never did thank Barb for not calling me out on that.

The hours ticked away and I grew antsy waiting for everyone to arrive. I don’t know if antsy is the right word, but that’s how it feels when I replay it. I didn’t want you to suffer anymore, I didn’t want to watch the minutes tick by knowing that in just a few hours you would be gone. My heart ached so badly. Barb and I decided to get you dressed in that beautiful pink tutu while AK took photos. I still could not believe that even the shoes fit your little chubby feet (sorry about that, you got them from me). You looked so beautiful, Ruby! You seemed to be really questioning what in the world we were doing to you, especially since it was the first time you were dressed, ever. One by one we let each person come in and see you before we brought you into the family room. My heart broke with each tear in their eyes, you are so very loved Ruby. Lindsey brought a little pink sock monkey for you, explaining how she loved them when she was little and really wanted you to have one, we put it with PePe in your bed. That monkey now joins me on my travels, it’s the closest thing I have to you.

The time kept ticking by and I grew more and more anxious, I didn’t want you to suffer anymore. I didn’t want to let you go, but i knew if I didn’t do it soon, I was going to change my mind about everything and demand that you be put back on full support; I couldn’t do that to you anymore. I was going to move you into the family room before Grandma and Grandpa got there, until Aunt Tay was my voice of reason and reminded me to calm down and wait for them, I’m so glad she was there.

The family room is where we held many meetings with your doctors and nurses, your surgeons, with your family, where I went to cry when I didn’t want anyone to see me break down. It was the only room big enough to contain just a fraction of the people that so adored you, and even then it was fairly crowded later on. Originally I had thought i didn’t want anyone to see you leave this world, I didn’t want anyone to remember you that way. I still feel guilty that I asked these people to be there, I can only hope that their dreams are not tainted with the images that my mind likes to show me when I just can’t handle it all.

Barb and I decided it was time, I followed everyone into the family room and waited for you to join us minutes later. I remember crying and smiling at the same time, I remember thinking how adorable you looked wrapped up in that yellow polka dot blanket; it was my favorite one out of all of them. Barb took you out of the bassinet and laid you in my arms for the last time. You still had a regular ventilator hooked up, but it was beyond clear that it was barely helping you. I remember seeing the color in your skin change ever so slightly, I knew it would only be a matter of time before you left.

Karen took pictures and everyone came over to give you kisses and hold your hand as we chatted about how you were such a ham for the camera. You were wide awake and looking around the room, this would be the last time I saw those beautiful eyes. Barb and I looked at each other and decided it was time to take out the tubes; it was time to let you go. You stayed in the crook of my arm as she removed the tape that had blocked those beautiful sweet little lips all that time, I still remember the curve above your top lip, it looks just like mine. You were given the medicine to keep you relaxed and sleeping, I didn’t want you to feel pain or to fight for air.

These are the moments that replay in my mind over and over again late at night, the moments I wished so badly I didn’t remember. I held onto you just a little bit tighter as I watched you fade away. In the moment it felt like an hour, but I know that’s not correct. I remember watching the color in your face fade away, I was so scared. I wanted it to stop, I wanted to yell at Barb to help you, to make it stop, but I knew i couldn’t do that; so i just kept watching your face. I remember telling you it was okay and trying to soothe you, even though I knew you could not feel anything (Barb told me beforehand some of what I would see was just a natural reaction and to not be afraid, that you were not feeling any of it). I remember crying the whole time just willing you to let go, I couldn’t bear to see your body still fighting what we already knew was a lost battle. Ruby, I’m so sorry it had to be this way. I never wanted you to hurt, I never wanted you to suffer, I truly thought I was doing what was right for you, as much as it was killing me.

I will never forget the moment I knew you were gone. I held you so tight Ruby, I don’t know if I was still hoping for a miracle; that maybe somehow someone would spare me of this pain and you would suddenly gasp for air and cry. I wanted so badly for this all not to be real. But it was.

For the first time, I passed you to some of your family, I knew they had waited months to hold you, I just wish it wasn’t this way. It was so beautiful to look up and see so many people standing in that room with us, Ruby. Just about ever person that had met you in those 16 days was in that room, I saw tears in the eyes of people that had only just met you, and on the faces of those that had dreamed of your face million times. They loved you so very much baby girl, I hope you know that.

I always read stories of parents keeping their babies with them for quite some time after, just to be with them. Somehow, in my heart, I knew you were not there anymore, I couldn’t feel you. I knew it was time to give you back to one of the women who loved you almost as much as I do. Barb wrapped you back in your blanket, and just like that, you both disappeared down the hall. I knew you were safe with her, I knew she would take good care of you, as she always did. She was our Angel of Boston.

Walking out of that hospital was one of the most difficult things to do that day; it had become our home for the last 16 days. Leaving the hospital with nothing but a bag of your blankets was so surreal. Having to tell people the whole way home that you were gone was so painful, saying it out loud over and over again made it hurt even more. I don’t remember saying much of anything the 4 hour drive back. I just wanted to get in bed and never come out. I slept with your blankets for weeks after, sometimes i even kept your hat inside of my bra for the day. When it really hurt, I would press my hand to my chest where your hat was in hopes that it would make the pain a little less sharp.

Ruby, it took months for that sharp sting to fade into the ache it has become now. Every now and again something bumps that scar and the sting returns, but you are the reason I keep going. I would gladly go back and do it all over again if I had the chance, you are worth every single second of this last year. I am so very proud to say I am your mom, and despite what so many say, it is I who is the lucky one to have YOU  as my daughter. You could have picked anyone in the world, but you chose me, and I couldn’t be more honored to carry on your legacy. You taught me how to live with my heart wide open, you taught me that fear is nothing if you have the light of love guiding you. You taught me that absolutely nothing is impossible, and even if it doesn’t go the way you want, by no means does that mean you failed. You gave me life Ruby. I hope I can make you proud.

I miss you baby girl. I love you forever.

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16 Days of Pure Love- A Poem to Ruby

A Poem to Ruby
A love that holds no bounds
Is surely a treasure to be found
By a precious little stone
Named RUBY
She popped into our lives,
Grabbed ahold of our hearts with both hands;
And we will never be the same
Because of where our queen bee land

Every time we think of her
There is a little sting
A bitter sweet memory
Of a precious little stone
Named RUBY
Who always let anyone know exactly how she felt
All the unfair cards she was dealt

We see her cry with madness
We see her sleep in peace within loving arms.
A little babe
Named RUBY
You are forever in our hearts and minds
Of your like we will never find

Rest your weary body dear one
The fight is over
Sleep in peace our dear RUBY,
Until we meet again.

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16 Days of Pure Love- The Visitor

My sweet Ruby Roo,
I don’t need to tell you how much you are loved and missed, you know that. I don’t need to tell you how amazing your Mommy is, you know that too.
I will tell you how grateful I am to you for showing us all what real unconditional love is. That love is the reason you stayed with us for 16 amazing days.
Remember one year ago today, when I got to be alone with you? We talked about a lot of things (I talked, you listened) I told you that we would all be ok when you left us, because we knew it was best for you. I told you about the special person that would come to take you away to a place where you could be happy and healthy. The day he came to get you we were all so very sad. Aunt Lacie and I knew he had come because we could smell his cologne. I told you when the guy with the big smile that smelled really good came for you, it was okay to go with him and you did. Thank you for trusting me.
I’ll never stop loving you forever and ever. AK

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16 Days of Pure Love- Since the Day I Met You.

To my dearest Ruby,

I can’t believe it’s been a year since you’ve been gone. I remember this exact date last year I was preparing to come meet you at the hospital in the morning with Heather. I remember feeling anxious/worried of not knowing what to say or saying the wrong thing. But I was also so excited. I hadn’t seen your mom in quite some time and I missed her so much. As soon as we got to the hospital your mom greeted us and she hugged me and we both instantly started crying. I don’t know if they were happy tears because we were seeing each other and that you were alive, or if they were tears of sadness of what we both knew was impending.

Regardless, as soon as I saw you all of the sadness disappeared.You were so beautiful, Ruby. I couldn’t believe how small you were. I was so nervous to touch you but your mom reassured me that it was ok. Your mom and dad had your station decorated with stuffed animals and blankets. They were so proud of you. Even a year later, your mom organized a team to march at the March of Dimes walk. There were so many Ruby red shirt wearers marching in your behalf. Not to mention, she raised an incredible amount of money in support of you. You were and are still so loved.

I felt very touched that your mom asked me to write this letter to you. I hope that somehow it reaches you. I hope that you read all of the letters from your family and friends and somehow keep giving strength to your mom. Sometimes I feel worried about her because it’s hard for me to comprehend how someone can persevere through this type of pain. Your mom is someone who has endured many devastating experiences, but has never given up trying to find happiness. She reminds me a lot of my mom. Someone who is extremely resilient and would do anything for the happiness of her children. I know that Kelsey would have been that kind of mother to you.

Most importantly, I want to thank you. Thank you for continuously reminding me how precious each day is. For giving me hope that even when every one is telling you something isn’t possible, it is. For all of the times I got caught up in the stresses of life and you and your mom reminded me of the things that are important. For every time I felt defeated and looked to you and your mom for strength. So here’s to you Ruby Roo: happy birthday my beautiful angel.

Love,
“Aunt” Allie

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16 Days of Pure Love- The littlest All Star

The first time I really got to talk to your Mommy a lot about you was on a trip to Boston to visit Aunt Taylor. It was before we knew for sure that you were a girl. Mommy always knew that, though. We laughed a lot in the car and throughout the day about our childhood memories. You see, Ruby, we caused some trouble when we were young. Nothing major. A few broken bones, a few heads caught in doll houses that we got out with butter and drop kicks, a few scrapes, bruises and scars from coming down hills on bikes and skateboards with alarming speed. Things like that. We joked (teased) about how you would likely be a hell raiser, too. We did a lot that day. A lot of walking around. Mommy was a trooper, she said it was good to walk. She told us the names she had picked out for you if you were a girl. Ruby. I loved it. My first thought, of course, was that you needed a nickname. Immediately I started calling you Rubiks Cube. These things just come to me. Later, we would joke about how well that nickname suited you and that I knew you before I even knew you. It was a great day in Boston for us all to catch up and see each other. That was also the day I met Max for the first time, but that’s a story for another day.

When we left Aunt Tay that day, I obviously never thought I would have to go back to Boston to see you. However, it seems we were right in our teasing about you being a hell raising Rubiks Cube. In the weeks leading up to your birthday, I constantly thought about how amazing your Mommy is. I was proud to know her, to be part of her life, and to be her family. I was proud of her strength and her ability to fight so hard for you. I was also pretty angry. Our family has endured some really hard times. I was angry that something so difficult was happening again. I kept that anger inside and tried to let hope and pride in your Mommy take its place.

RUBY ROO IS HERE!!! That was the text I got from Aunt Lacie right after you were born. I pretty much flipped out. There were a lot of phone calls after that with Aunt Lacie and your Aunt Karen, who were lucky enough to be in Boston with you and Mommy that day. I couldn’t believe it. I mean, I could believe it because I know your Mommy and I know how hard you were fighting, but still, I couldn’t believe it. It was really hard to be 3 hours away that day knowing everything that was happening. I couldn’t wait to see you!

A couple of days later, I was in the car with Aunt Karen on my way to meet you. We got an upsetting phone call from Aunt Lacie. I’ve never seen Aunt Karen drive so fast. That anger that I had been trying so hard to hold down came back. I made sure to stuff it in when I got in the hospital because I didn’t want anyone to see me like that. I know my role in this family. Stay strong, keep people laughing, let everyone come to me and talk, keep it together. So, I did. The anger was still there, though. When your Daddy said, who wants to come see her, I jumped up and walked right out the door to the NICU. Everyone kept talking about how much of a miracle you were. I knew that, obviously, just because you were there and still fighting after everyone counted you out months ago. For me, you were a miracle for another reason as well. The second I saw you, every bit of anger I felt was gone as if I had never been angry before in my life. I touched the little piece of your crazy hair that was my favorite and I knew that you would give me the strength to get through whatever happened next and the strength to be there for your Mommy and the rest of our family.

It amazes me how much I learned from this tiny little being in the short time you were here. It amazes me how the song I picked out for your celebration video comes on the radio when I need to hear it most. I will never forget the miracles we experienced with you and the inspiration you have been to so many people. I am so lucky to call you my Rubiks Cube. Thank you, Ruby, for being your tiny, wonderful, amazing self.

P.S. Aunt Lacie and I caused some trouble in the hospital over the next few days the way that we all did when we were little. She actually scared a nurse into leaving the room after coming out of the bathroom wearing a silly outfit. If I thought she wouldn’t kill me for posting the picture, I would definitely do it.

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16 Days of Pure Love- One more Day

If I had one more day with you I would read you a Boston baby classic: “Make Way for Ducklings” by Robert McCloskey.
Make Way For Ducklings.
Mr. and Mrs. Mallard were looking for a place to live. But every time Mr. Mallard saw what looked like a nice place, Mrs. Mallard said it was no good. There were sure to be foxes in the woods or turtles in the water, and she was not going to raise a family where there might be foxes or turtles. So they flew on and on.
When they got to Boston, they felt too tired to fly any further. There was a nice pond in the Public Garden, with a little island on it. “ The very place to spend the night,” quacked Mr. Mallard. So down they flapped.
Next morning they fished for their breakfast in the mud at the bottom of the pond. But they didn’t find much. There was no place there.
Just as they were getting ready to start on their way, a strange enormous bird came by. It was pushing a boat full of people, and there was a man sitting on its back. “ Good morning,” quacked Mr. Mallard, being polite. The big bird was too proud to answer. But the people on the boat threw peanuts into the water, so the Mallards followed them all round the pond and got another breakfast, better than the first.
“I like this place,” said Mrs. Mallard as they climbed out on the bank and waddled along. “Why don’t we build a nest and raise our ducklings right in this pond? There are no foxes and no turtles, and the people feed us peanuts. What could be better?” “Good,” said Mr. Mallard, delighted that at last Mrs. Mallard had found a place that suited her. But—“Lookout!” squawked Mrs. Mallard, all of a dither. “You’ll get run over!” And when she got her breathe she added:” This is no place for babies, with all those horrid things rushing about. We’ll have to look somewhere else.”
So they flew over Beacon Hill and round the State House, but there was no place.
Then they flew over the Charles River “This is better” quacked Mr. Mallard. “That island looks like a nice quiet place, and it’s only a little way from the Public Garden.” “Yes,” said Mrs. Mallard, remembering the peanuts. That looks like just the right place to hatch ducklings.”…
Happy birthday, Roo!
Love,
Aunt Tay

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16 days of Pure Love- 4th of July

The Fourth of July Without Fireworks

To me, this was the day the World wasn’t on its axis. It was as though it was just floating in space and not following the rules of the universe. It almost seemed fitting for the experience we were about to have.
We did a lot of waiting that day. There were more questions than answers and there were questions we didn’t want to ask. There was hope and fear, the feeling of being terrified and showing love and support all while feeling like running away.
No one knew what would happen next. What did ‘next’ mean anyway? Live in the moment? Hope, pray and hold tight? Think about other things? I still can’t answer that question. It can’t be quantified.
What I do know is that I put on the bravest face I could. I knew I needed to be strong. I took the role of the currier, the lactation consultant and the funny one. Inside, I felt so empty, incomplete and invaluable. Was I even doing the right thing?

The answers to those questions lie at Bringham and Women’s Hospital. There was this incredibly precious, adorable, delicate, beautiful baby girl giving the NICU nurses hell! She is my very first niece. In her two days on Earth, she has changed my outlook on life. Without even knowing it, she made me stand tall when I felt like collapsing, smile when I wanted to cry and celebrate the little moments in life that we so very often take for granted.

This was the day that we would learn how strong and brave she really was. With a brave face, I attended a meeting with my sister, some extremely close family and a team of amazing specialists. They told us things that we pretended not to hear. We hoped for things we did not want to think about and we waited.

Today, one year ago we took the longest walk from B&W to Boston Children’s Hospital with the biggest entourage of family and doctors. It felt like we’d never arrive. The doctor said, “Do you want to give her one more kiss?” I was so oblivious that I didn’t even think that they were talking to my sister. I jumped in front of everyone and touched that tiny hand. We paced a place that is usually busy. That day it felt abandoned. They only doctors present were with our Queen Bee. Every time we heard a creak, a door open or a voice, we jumped from our chairs. The waiting room was somber. I had to move. I took a walk that lead to the cutest gift shop. I began to browse. I looked down and there at my feet in a little basket was a stuffed bunny, Ruby from the cartoon, Max and Ruby. Kelsey HAD to have her. She didn’t know it yet, but the purchase needed to be made. During on of our long talks, Kelsey lamented about how she wanted an Alex and Ani daughter bracelet. Low and behold, this adorable gift shop also had the jewelry line. I walked as quickly as I could (without losing my direction) to Kelsey. I proudly presented her with these two treasured keepsakes. It made the moment a little less sad, however brief it was. I was successful in making Kelsey feel joy. Score!

Here comes a doctor in green scrubs. He’s walking too slowly. He looks somber and my heart begins to race. He says, “We got it!”
Ruby’s surgery was a success.

walked back to the family room and B&W. We didn’t want to be far away when you were moved back to the NICU. I recalled a song that a friend of mine played that encouraged her when her sick baby championed through his little life. Wonder, by Natalie Merchant. I began to sing the song in my head. I had to hear it right then and there.

You’re one of the wonders. God’s own creation. The doctors can offer no explanation.

At that moment in time you were one of the wonders. Every time the double doors opened, we jumped. We waited for them to tell us that you were safely back in your isolette. You were finally back. Even though you didn’t belong to me, I wanted to rush in and hold you. I knew I couldn’t and I felt selfish for wanting that. I wanted to touch your downy soft baby chick hair. I wanted to look at your chubby leg rolls and see your sweet face.

That night it rained. It stormed and the sky lit up with lightening. I remember standing outside and for once not being scared of the storm. If you could weather the storm inside, I could deal outside. I stood just a few steps from an awning and let the storm wash over me. I needed a few minutes to break down. I didn’t want anyone to know how weak I felt inside. I had to cave privately.

During that time alone, I lost everything that I put out. I lost my strength, my humor and the ability to be brave. It all poured down my cheeks as the sky lit up with lightening and the thunder echoed through the tunnels of the hospitals. In that moment, as far apart as we were in life, I firmly believed that my mother sent whatever strength and peace she had to watch over Ruby and keep her with us. It was dark,dreary and wet. The sky was supposed to be lit with beautiful fireworks to celebrate the freedom of America. It didn’t happen. The celebration was quiet. The sky stayed dark. Whatever energy that was supposed to be expensed in celebration was channeled to a place where it was needed more. I’ll never forget the Fourth of July without fireworks. I’ll always remember the sights, the sounds and the smells. All it takes is something small to cue the memory. And I’ll ALWAYS remember how it felt to lay eyes on the most beautiful, precious angel in the world. I hope grandpa and Bobby give your sparklers and Nana has you decked out in a red, white and blue, sparkly tutu, with tiny pigtails and lots of bows and I hope you try to giggle and run away as she tries to chase you! I’m sure Grandma June will be giving you all the treats you desire. I love you sweet girl. You changed my view on the world and I will forever be gracious for all that I have learned about love and life from you. Happy Fourth of July in heaven. Sending all of my love to you on this memorable day.

Aunt Lacie ❤️

Now we have to take that long walk back. We wait for her arrival back to the B&W NICU. All of the hope, worries and fear are put aside. We can all breathe.

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16 days of Pure Love

I have a special surprise for your first birthday my Love! I have letters from some of your friends and family to share with you. I’ll give you one for each day baby girl, and I will not read them before you do.

Happy Birthday precious angel.
Just stopping by to say hello and happy 1st birthday. Sending you kisses and hugs and lots of love.
You are missed so much and loved more than you could ever know. In the short time that you were here with us you touched so many lives.
I was one of just a few who actually got to hear your voice. It was a beautiful sound that had your mom and I laughing and crying at the same time. It was such a wonderful end to our midnight ride to Boston. And what a trip that was. I prayed all the way that you would wait til we arrived before you entered this world and gave your mother instructions on what she was to do if you decided not to wait. But you cooperated and I was so grateful for that. I never did thank you for that. So…thank you!
Grampa was so happy when he got to see you and you made his day when you grabbed his finger and just held on while you stared at him. Such little things that became precious memories to hold on to until we see you again.
We both love you and miss you and think of you everyday. We know that someday we will see you again. Until then fly high precious angel. Watch over your mom and know that you are loved and thought of always and forever.
Happy Birthday Ruby.

Love love love you
Gramma and Grampa

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Who you’d be today

6/26/15- My beautiful Ruby Echo,
One year. One whole year since you turned my life upside down. One year since you filled my heart with so much love that I was sure I was going to explode. It’s been one whole year since I first saw you, all wrapped up in those blankets. You were so small in the reality of it all, but I never noticed, I just saw my whole heart lying in that bed. You had me from the very start, my body, my heart and my soul. All that I am, all that I aspire to be, it’s all for you.

7/2/15-

Today is your birthday Ruby, and I want to celebrate here on earth with you, and for you. Today marks the first day of your 16 days here on this earth. The most beautiful and crazy day I have ever experienced. I miss you so much baby girl. I wish I could hug you one last time, even if just for a moment. Happy first birthday angel, mommy loves you so very much.

I made a wish on a star for you, just in case wishes can come true.

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Mother’s Day 2015

My precious little girl,
I have a lot to say to you today, so please try to follow along.
I miss you so badly right now, this week always stirs emotions. I find myself wondering tonight what you skin felt like against mine, the way you always peeked out of one eye to see who was visiting before you drifted to sleep again. I find myself looking at the photos your nurse took for us, you tiny little butt and the oh so adorable rolls in your thighs. I smile thinking how much you were like me, even down to the way you slept, or played with your hair when you were tired. I remember the nights I just held you while you slept, I never wanted to let you go. I remember how terrible I felt the night I put you back to bed early to avoid the night game traffic at Fenway; you were so upset, and I felt my heart shatter the whole way home. I am sorry I didn’t hold you longer, you always did so well when someone was holding you, I should have stayed. Why didn’t I just stay? I hated how much time pumping took away from us together, but I only wanted what was best for you.

It felt like this week took forever to pass, and all I wanted was for it to be over. I hated each time someone said “Happy… Have a good weekend.”. It hurt every time. Or when they tried to cover up what they thought was a mistake. It’s not a mistake, I’m still your mom. You still don’t listen to a word I say and always did the exact opposite. I still tucked you into bed and read you stories (which you hated- I learned the hard way, I’m sorry), I still washed little baby blankets, and took a million photos of you sleeping. I still love you with every fiber of my being. I am still a mother.
It’s been almost 5 years to the day that my mom has been gone, I’ve told you about her before. I still ache to call my mom when my ache for you gets to be too much. I still remember the last time I saw her, it haunts me to this day. I know that’s not how she wanted it to be, but I had to see her one last time. I miss her laugh, I miss her smell, I miss that stupid song she used to sing to me, I even miss her raunchy humor- as embarrassing as it was. I wonder all the time if she found you right away, if she hugged you before she even told you who she was. I wonder if she is laughing at how I really did have a daughter just like me. I often dreamed of sitting you in my lap and telling you stories about her, I had no idea that she would be the one to tell you all about me. I secretly hoped that one day I would be able to tell someone how you did “mad baby” too, and quietly prayed that you wouldn’t cut your hair like I did.

I am jealous that she gets to spend tomorrow with you. I’m jealous that you get to spend tomorrow with her. What I wouldn’t give for just a moment to see you both, together.

But I get to spend the morning with some of the people that mean the most. I am debating wether I am going to turn my phone off when I wake up. I think I need to make time to just be in the moment. I think I need to spend some time with Grandma, who graciously tends to our hearts this time of year, knowing that we straddle two worlds on Mother’s Day.

I’m starting to understand that since my moms passing I have always straddled. I celebrate the absolutely amazing women in my life, while hurting for the one that is gone. My heart physically hurt for these women who have also lost their moms, and I was always sure to let them know they were not alone. Maybe this was preparing me for you? Just maybe, this developed sympathy and compassion was to shape me for your arrival to this world. Maybe it is what got me started on this path of healing though helping others? Maybe it is the strength I found in the hands that hold me up that keep me going now?

I received the most beautiful flowers I have ever seen the other day, the lillies are the size of my face and are so fragrant you can smell them rooms away. I was caught off guard. You see, Ruby, the card they sent was from you, and since I wasn’t expecting anything like this it brought me to my knees. In that moment, it all came crashing in on me, Mother’s Day as a bereaved mother, May 12th marking 5 years since I heard the words that shook my world off it’s axis. I spent the afternoon sitting quietly outside, and for the first time I did not fight what came natural, I cried. I cried for the 23 year old girl sitting in the passenger seat of a car just begging to drive fast enough and far enough away to go back 12 hours in time. I cried for the moments I sat by your bed just begging someone, anyone, to just help you. I cried for the moments I didn’t allow myself to cry because there just wasn’t any time to stop and get emotional. I cried for the pure love that I felt in that moment, for someone to think of me enough to make such a beautiful gesture. For someone to remember that I AM a mother. Whoever this person is, THANK YOU. I finally remembered to stop and breathe again. Love knows no boundaries.

I love you sweet girl, I miss you beyond words.

Love always,
Mom

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March 21st, 2015 One year.

My little Roo,

I’m sure you know by now, this week starts the 1 year marks for what I can only describe as the most beautiful and the most painful year of my existence. One year ago this past Wednesday, Dr B told us that your legs were small and I laughed at him. I made Daddy stand up to show him that neither one of us were above 5’5″. I told him of course you were small! He kept his cool and explained that it could be nothing, it could be dwarfism, we would take another look in Vassar this week to see. I googled it and found it could also be a soft marker for Down Syndrome, I accepted that. Sure I was scared and a little sad that some of the dreams I held for you would be different, but I love you so much that as long as you were here I was going to be happy, no matter what. Aunt Gabby talked to me for 2 hours that day about my fears, she tried to keep me calm and reason with the storm I was brewing from day 1. We talked about my fears that something wasn’t right, all pregnancies can’t be this paranoid, every pregnant women does NOT check for signs of blood EVERY TIME they wipe. I was terrified, but SO excited that I was right!! You were my little Ruby Echo, my little REY of sunshine. My life was for you, my heart would beat just for you, I would gladly give my life for yours. Little did I know I would try my hardest to bargain for just that deal.

March 21st, 2014. 7 am in Vassar hospital. I checked in with a bit of a struggle because my name was not on the patient list for the day in the main lobby. We got upstairs and realized we were there before the tech, so I slid down the wall and sat on the floor in my grey yoga pants and blue sneakers. The tech finally came 10 minutes later shocked we were so early and brought us into her room while she fired up the machine. I remember looking at her diplomas, she was well skilled in her field judging on this fact alone, she also got married while finishing her studies as her name changed on certificates. She married an Italian.

First words from her mouth were
“Wow! This is one feisty baby!”
I laughed, that was the second time that was said this week. She confirmed we knew the sex and told her your name as she took photo after photo. The whole thing was projected on a large screen tv to my left so that Daddy could watch too. You moved away from her, kicked her wand, pushed on it with your hands, and started doing flips, we have a photo of you mid flip. Picture after picture, it took a total of 15 minutes before she excused herself to grab the doctor.

The fiery red head came in looking very disheveled, introduced herself and explained that she would take a series of photos before she would explain everything to us. That’s exactly what she did for 5 grueling minutes, she took more photos not saying a single word. I was starting to get nervous. She finished and pushed herself away from the machine and looked directly into my eyes. It was bad.
“The baby has shortening of the limbs, the long bones are bowing, the spine is curved and not fully ossified (turned to bone) nor is the skull and the rib cage is very narrow. I believe the baby has a form of dwarfism called Achondrogenesis. It is a lethal form that will not allow enough room for the lungs to develop. Most likely the baby will pass before birth or during delivery.”

My brain started spinning. My heart was in my throat and was threatening to come out if I opened my mouth long enough.
“Without lungs you can’t breath, without air she can’t live.” “Correct.”

I realized at this point I had started to cry, it was sinking in despite my desire to unhear what was just said to me. What were they saying?? I zoned back in to hear the doctor discussing options.
“We can do an amnio to confirm diagnosis, but I’m almost positive that’s what we are seeing. You can schedule the appointment for Monday, you can decide then if you want to have an early delivery. You can terminate the pregnancy now and try again immediately. You have until 24 weeks in New York State to terminate, but the amnio results won’t come in for 6 weeks. If you rush the results they might be in by the times you’re 26 weeks, in which case, we can use a loophole and go to 26 weeks for termination. This is our Geneticist, she can answer some of your questions.”
I was stunned. ” Book the amnio for Monday. I just want to go home.” And like that we were out the door on our way home.
I cried the whole way. Not understanding what was happening. Blue lights flashed behind us, the cop returned with Daddy’s license and asked if everything was okay, directing his question at me: sunglasses on, sobbing, looking down in my lap. I sent a message to Grandma telling her that the doctor doesn’t think you will have enough lung development to survive after birth.
“So what does that mean?”
“It means she is going to die before we can ever take her home, IF she makes it to delivery.”
I sent another message to work with the same explanation, followed by a message telling them I will be in at 11am to work on my clients. I had 4 people that I really loved coming in and I wanted to be normal. I wanted to pretend this wasn’t happening. Daddy begged me not to, but as soon as we got home I went up and got dressed for work.
“You’re really going?!” “Yes. Call me if you need me.”
I googled most of the day. Everything I found came up with the same answer:
“Incompatible with life.”
How can they say that?! How can they know for sure that some miracle isn’t performed? How can science not be far enough that we can crack a babies rib cage open and put in a metal plate to help their lungs have room?! How can they not be able to do something?!!
I went home. I took the longest way possible. 2 hours of driving with music blaring, occasionally interrupted with phone calls, which I ignored. I couldn’t talk. I sat in the driveway for at least an hour and even then only made it to Gabbys front porch. The geneticist called.
“How are you doing? Do you have any questions? Well I have some bad news, your insurance will not cover an amnio and just for the skeletal panel, which doesn’t guarantee that it will be detected since these types of things are so rare, will be just over $3,000. The doctor would need that money up front to do the testing. If you don’t do it, you could always send the body to Cedar Siani in California for testing but that will take up to a year before they send the cremains back to you.”
“I’ll talk to Larry and we will just keep the appointment for Monday just in case.”
“You’re handling this a lot better than I had expected. Are you sure you don’t have any questions for me?”
“Nothing you would actually be able to answer, my questions are more for the universe.”
I talked to a few people to say that I was “okay”. Really what I meant was “no I didn’t kill myself today”.
I just couldn’t handle it. I searched for doctors on the Little People Of America website, found one in Boston and one in NYC, I would send them emails later, and whoever called me first is where we went.
I spent the rest of the day in bed, headphones in. Gabby came to check on me and sat and talked a while, she sent Daddy to get food, which I didn’t bother eating. I sat staring out the window in the dark. Hoping to wake up from this nightmare.
I wasn’t sure if I should listen to the doctor and just “terminate and try again”. The more I thought about it the more horrible it sounded.
You were quiet most of that day/ night after the doctor. Barely moving. I stared at the ONE photo they gave us, my little Roo, mid flip. You looked perfect and beautiful to me, they had to be wrong.
I went to bed hoping to never wake up. I begged for whoever it was, if they were going to take you away, they had to take me with you. We both barely slept that night.

So today I planned this event. Today marks one year of your diagnosis. One year ago today I was told for the first ( but not the last) that you were not going to live the life I had planned for us. I started a team for the March of Dimes in your honor, we have raised $2,500 up to this point. We have 26 members signed up to walk beside us in your honor. Today we have 5 women all donating every penny they make at the shop to March of Dimes in your memory.
I bit off more than I could chew. This week has been nothing short of painful and exhausting. I want so badly 12am March 21st to cancel the event and stay home in a dark room by myself, like I had originally planned. I push myself to be stronger than I really am. But here’s my secret, and you mustn’t tell anyone Ruby,
I’m not as strong as they think. This is hurting me in ways I can’t even describe, my chest aches and my eyes burn. I force myself to stand up and keep pushing on because I can’t let you down. People need to know what it’s really like to lose a child. They need to know what it’s like to be told their child is “incompatible with life”. They need to know that a parent’s pain is so very real. I need to show them that even though doctors didn’t think my child was worth the life I gave you, to me, you were worth every beautifully heartbreaking moment. You gave me 16 beautiful days to show you as much love as humanly possible before I finally found the strength to let you go. I don’t regret for one second a single moment of the time you and I were together. You were most certainly compatible with life and love, you just didn’t need as long to finish your life’s work.
Fly high my beautiful little angel, mommy will join you eventually, but until then, keep dancing. I love you more with everyday that passes.

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February 19th 2015, Hope.

My sweetest little Roo,

I’ve missed writing to you these last few weeks. I’m sorry I had to take a break, I was struggling greatly recently and I wasn’t sure what to do this time. Losing you has been the hardest thing to navigate, I get lost sometimes and must turn back to find you, to find myself. I feel peaceful tonight, I have a small smile on my face as I write. I remember how beautiful you are, and the overwhelming love I felt when I finally laid my eyes on you that evening of July 2nd. I learned so much in the time you and I were together. Tonight I want to tell you about on of the most important things: Hope.

Maya Angelou once said
“Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope.”
Hope is a choice. Sometimes it is simply hope that gave me the strength to keep pushing on. I hate using the word “strength”, I feel like strength is also a choice you make to face a difficult decision. To me, the choice was never mine to make, you were happy and for all intents and purposes, healthy, you were just small. Hope allowed me to stay calm when I wanted to run screaming. I made the choice to be hopeful and cautious all at once. I prepared for the worst and still hoped for the best everyday, because that was the only way I could keep going. My hopes changed as time passed, I finally understood what hope was. I started by hoping they were wrong, that maybe the doctors were wrong. After my extensive hours of research and multiple doctors visits, my hopes changed to more simple ideas. I wanted to meet you alive, I wanted to hold you and look into your eyes, I wanted to dress you just once in ballet slippers and a little tutu. I wanted to see the look on Daddy’s face when he held you for the first time, I wanted to study every curve and every freckle, I wanted to have just a little bit of time with you. Those were my hopes.

These days I have different hopes. I hope to make a difference, I hope to help more families, I hope to make a big impact in honor of my little girl. Maybe it was that you were the biggest baby in your room, maybe it was my mommy goggles, or maybe, just maybe, it was your great big personality coupled with the great big lessons you came here to teach us all; I never saw a baby with dwarfism. I saw a little girl here to deliver a BIG message. I saw a beautiful angel touch down and stitch these lives together with the strongest of threads before flying away again.

I launched my campaign for the March of Dimes. I set up a team back in August, knowing I wanted to make a difference, I wanted to give back in your honor. To me, it’s just that, an honor, to say “I’m Ruby’s mom!”. It is an honor to tell your story of hope and of love to everyone. It is a true honor to know that so many people want, and are, joining this event. That SO many people love you, simply for the message of hope and strength that you brought to us. In your honor, I want to bring light to birth defects and genetic disorders that take away the hopes and dreams of families. I want to help fund research to better understand the monsters you and your friends had to fight. I want to live to see the day doctors no longer say “if you terminate now, you can try again right away.” As if our children could be replaced so easily. I want to help the woman I remember sitting on the sofa outside of the NICU doors nervously waiting for someone to tell her something about her baby after she was rushed away from him for emergency medical treatment. I want to help the beautiful strong momma I remember in the pumping room with brand new twins born at a terrifying 25 weeks. You are all so loved.

Ruby, I know you have been a busy little girl, I hear of your visits all the time. I know you’ve stopped by to say hello before you’re off on your next adventure again, your signs have never gone unnoticed. Keep watching over everyone little Roo, you’re doing a beautiful job. Mommy is so proud of you and I can’t wait to hold you again, only this time, I’ll never let go. I love you to the moon and back again.

Love always,
Mom

Janary 13th, 2015

Ruby, I havnt found the strength to write for so long, I’m sorry.

The holidays were so very difficult for me. With each passing day of the joy around me I felt my heart shatter. None of this is fair. I want to scream. I tried to go into stores, and usually failed miserably, leaving as quick as my feet would carry me. I instead put thought and effort in making a few things for close ones. Even that had me thinking “what’s the use?”. I stayed home. I avoided celebrations just for the fact that I couldn’t handle it all. I couldn’t pretend all was well when my heart hurt this badly.

We both know I’ve managed to shove it down long enough to get through the day, but sometimes it just feels like an impossible task. Like today. I didn’t even care about being at the dentist, it’s was a welcome reprieve from the ache in my chest today. I should have cancelled the appointment and just stayed home for the day in my bed, but I pushed on like I’m “supposed to” and I went. But why does it feel like I’m expected to just move on? Everyone else’s lives kept going, mine feels frozen. How can anyone possibly expect me to just move along like I don’t feel dead inside on days like this? Why is it that because I don’t openly show just how messed up I really am, everyone thinks I’m all better? How can something so traumatizing be so beautiful? How can I stop secretly blaming myself for your death? How can I explain that just thinking about calling someone when I’m like this drains me of any energy that hasn’t been expended in my day long tears?

I’m hurting baby girl. Today for some reason, hurts like it did in July. How did I step back?! When did I fall? I don’t remember. I don’t remember seeing that big black hole. Was I dancing too close to the edge, or did I deceive myself in thinking I actually made it out? Is this punishment for 2 weeks ago? I’m sorry I didn’t tell that client your story, I’m sorry I kept changing the subject, I just couldn’t do it that day. I couldn’t tell the rehearsed story, feel the sad pitiful eyes on me and say the same rehearsed “no it’s okay you didn’t know.”. Not that day. I’m sorry I didn’t tell that Jehovah’s Witness where to stick his opinion when he told me your death was a punishment, it seemed pointless to argue with him, but I prayed that he may someday hold his first child and remember my face.

I know I’ve written a few letters that I ended up removing, and I promised to keep writing, which I have no intention to break. But I think I need to step away from the light for a while here too. While my writing is healing for me, the aftermath seems to be anything but that. This is my last public letter for a while. I can’t say forever, I don’t know what the future holds, but the here and now is not a good place. I’ve become too concerned about offending people, and for some of those people, too concerned about making sure I offend them. I am sad and angry. I developed severe issues that I don’t like to open up publicly about, and I’m starting to get the feeling like I’m talking to a wall.

Maybe taking a step back is what I really need right now. Living on after the loss of you is beyond devastating. I hurt in ways that even I can’t put words to. I fell again baby girl, I’m sorry. The logical side of my brain is there I can hear her, but the emotional side, the part that is missing a 14 inch piece, doesn’t care. That deep dark part of me that blames myself for your death doesn’t care that the logical side knows I did everything I could possibly do. The fact of the matter is you’re gone and I’m still here which means I didn’t do everything I was supposed to do. I know I said I forgive myself, but I was wrong, or maybe I wasn’t ready to, I can’t forgive myself for letting you go the way you did.

I have graciously shared you with the world for so long now, but right now I want to hold you as close as possible. I want, for just a little while, that you be mine and mine alone. This pain is so deep, and yet, I love it. This pain is all I have left of you, and I fear to let it go means to let you go. Maybe I’ll put those fancy new notebook to good use for a while. I want to write about July 18th, but I don’t think I’m ready to do it here, not yet. That day still burns in my heart, I so badly wish I could forget those images, I so badly wish I could go back and change how that day went. I forgot to tell you so much. I wish just one day I could have you back. I don’t care if it’s in the NICU again, or if it was one of the last few days I was pregnant. I just want you back for one more day.

I love you so very much Ruby, you were and still are my entire world. I tried baby girl, I really did, I’m sorry I couldn’t save you. I’m sorry. I tried to do everything in life to save you, I vowed to do everything to protect you, even in death. I will embrace these feelings, I will guard your memory. It’s all I have left.

I love you Ruby Echo. You are the most amazingly beautiful thing to ever happen to me. No matter how much it hurts now, I know the things you taught me in your brief life, and the things I learned in the wake of your death are just shaping me to be the best parent I can be, when the time is right of course. I learned to live with my heart wide open, even if it hurts me. Keep dancing baby girl, Momma will join you when my work here is done.

Love forever and always, Mom

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