Sunday, February 7, 2010

Memorial, pt 1

For those of you who couldn't be with us yesterday at Jane's service, this was what I had to say. Well, this is what I wrote, but I did stay pretty close to the text, and I only lost it four times:

Hi, invisible readers. It's wonderful, and overwhelming, and just a little strange to see you all and speak with you directly. Standing behind a podium, doing public speaking... this isn't exactly my strength under the best of circumstances, so please set your expectations low so I have some hopes of meeting them.

Jane's story is a brief one. Her timeline is almost exactly one year long -- I became pregnant with her in the end of January 2009. The timing is so neat, so close, that it's hard to believe that this past year actually happened. Of course, it did. Seeing you all here is proof of that, if I were looking for proof.

She was born, as you know, 13 weeks early. We skipped the entire third trimester. I'd been on bedrest with her for seven weeks before she arrived and every single day was manageable, until July 22. There had been nothing to do in all that time but wait for a sign that we couldn't wait any longer. Every day during my confinement at the hospital (and isn't that archaic term just the most perfect word for being stuck in bed for weeks?) I was strapped to a monitor so we could check on Jane's well-being, and every day (and night) she was just fine until suddenly, on the 22nd, she wasn't. Her heart never faltered, but she wasn't moving, and then I started having contractions, and then there I was, being wheeled into the operating room for an emergency c-section. Jane was delivered at 1:40 in the afternoon, 13 inches long and weighing a whopping 1 pound 14.5 ounces.

And this is where my appreciation for technology begins. Jane's life was saved in her twelfth minute. I still don't know exactly what went down in the place off the surgical suite called the Panda room, but I do know that the actions taken then gave us six months in which to know and appreciate and love our girl.

For two weeks we drove to the hospital every day, and every day spoke to a good percentage of everyone we know to update them on Jane's progress. On August 6th, when Jane was fifteen days old, I started Jane's blog. People have been saying some awfully nice things about it, but honestly? I started it because I'm lazy. I was tired of making phone calls and writing emails to everyone so I just dumped all the information in one place and left it up to you folks to stay informed.

And, unexpectedly, you did. Lots of you. This is where my appreciation for technology really takes off. To my unending surprise, people I love, people I barely know, people I don't know at all, became invested in Jane's story and her welfare. What might have been a private family struggle became a community experience. It was important to all of you, and to many others who couldn't be here today. I'm not going to name names (Mom), but some people have said some very nice things about my writing, but I think the reason Jane's story was so compelling is that Jane herself was such a PERSON, you know? My words were extraneous. She pulled you in with her clear gaze, she sized people up. She had opinions, our girl, and never shied away from making them known. For a baby who couldn't vocalize, she spoke loud and clear about how she felt about her world through her eyes, and her body language, and through the monitors. Jane told her own story -- I just wrote it down for her.

Because you did follow along as her story unfolded, I don't have to tell you about the many ups and downs of Jane's life. About the obstacles she surmounted, the expectations she confounded, the hopes that ultimately were dashed, because you were all there with us, every day, companions on our strange and unfamiliar road.

Thank god Al Gore invented the internet!

Seriously. Because we are lucky enough to live in the time and place we do, you are all familiar with Jane's skepticism, her directness, her deep love of Birdie and her pacifier addiction. Most of you were never able to meet her in person, but you've seen her delicious thighs and outrageous cheeks, the knee dimples and Big Boy hair flip. You cheered us through her accomplishments and agonized over her declines. You became a part of Jane's community. You became part of her story. You lovely people from Dartmouth-Hitchcock became family.

But in the end, when the end finally came, Jane was far away from most of her family. In the end, it was just Jane, and Tom, and me, and my incredible sister Jenny and brother-in-law Kevin.

I didn't say much about what happened when I wrote about that day, but I think I should now. Jane's time at Boston wasn't what we'd hoped for. She became very ill shortly after arriving, but she was slowly recovering. And then on Sunday, she was nearly undone by something as insignficant, as lowly as a mucous plug. Something she could have coughed up just two weeks earlier nearly killed her. And this is where my gratitude for technology reaches its apex. Thanks to the heroic efforts of the team at Children's, we were given three more days with her, days of the most fragile, tenuous hope. Days in which we waited for a sign from her about how it was going to go. And on that last day, when it was clear that she was slipping away from us, we didn't have to wait for signs anymore. My sister and I bathed her, and I dressed her. And at last, the machines were turned off. There was no frenzied crisis, there were no desperate acts or shouts for help. For the only time in her life, Jane was surrounded by quiet. And it was good.

There was no dramatic last drawing of breath. Her heartbeat, which had scarcely faltered throughout her life, simply faded away, like the last chord of a song.

I don't think of Jane's life as a six-month struggle for survival. I just don't see it in those terms. Her time was not spent fighting. It was spent growing, and learning, and watching, and doing the things a baby should do. She lived and it was my great good luck that I was part of her life. Jane spent her days surrounded by machines and monitors, but she lived a good life. She played, she nursed, she held me with her gaze and with her hands. She played pat-a-cake and Row Row Row Your Boat with Thea, and listened to the Beatles with Tim and had dance parties with Angela and Meg. She LOVED her sister Sarah. No matter how she was feeling, she always did better when her sister was there to help take care of her and hold her hand.

Our Girl Jane's life mattered to more people, had a further reach, than many people attain in the hoped-for three score and ten. And for that, I'm incredibly grateful.

So! "Jane was here", the concept. Want to hear about it? A very good friend asked toward the end what she could do to help, if I wanted or needed anything. And I told her that the thing that would make a difference would be notes or postcards from people who had been watching all this unfold and whose lives had been touched by Jane's. Not sympathy cards, just a hello. Sarah is a BIG FAN of Horton the elephant, so what I was thinking was sort of the reverse of the Whos in Horton Hears A Who -- not 'We are here!" but "Jane was here, too!" Does that make sense? I just was hoping to hear from a few people that Jane's story had reached them, and mattered. We've heard from over 400 people so far. All over the US, and Canada, Germany, London, Paris, India, Norway... Jane's story reached farther than I ever imagined. From all over the world, we've heard the YOPP that tells us, yes! Jane was here. And what I keep hearing from you is that she will always be part of us all, forever Our Girl Jane.

And now, my sister, Jane's Awesome Aunt Jenny, is here to read a bit from Horton Hears a Who.


Anonymous said...

That is beautiful, Tia. You done good.

mommatosena said...

THANK YOU! for posting what you shared. I was still yesterday @ 2pm and just sat and thought about all that you have been through. All that you will go through and hoping that you were surrounded by love and managing to get your words out without falling apart. I knew that your courage and grace would carry you and you were proudly and loudly sharing your and Jane's story.

I am greatful to know that you all had a quiet time at the end without the frenzied cries for help. To know that Jane had her beloved champions with her and just faded away feeling loved and comforted.

She will always be a part of our lives and the gifts that she has given us are numerous.I do believe that our Angel Elijah was there to greet her and I know that your forget me nots will blossom with your love and bring you the joy that ours do. A tangible indication that your Jane was here.

Hugs and love as you continue your journey of healing and realizing the new normal. May you all find strength and peace in your family and friends love and know we are all still with you loving you from where ever we are around the world.


Kami Buchanan said...

Amazing! I have never commented before but I have been reading. I found your blog on the day you announced Jane had passed away. I went back and read almost all your stories of you precious girl. You are an amazing writer and a wonderful mother. Jane was here and I was able to know her from your words. Thank you and God Bless you! Lean on God during this time and may he continue to bless you and your family.


artandsoul said...

Dear Tia -

Thank you. For everything. For this beautiful life that you have graciously shared. This glorious child that I get call "Our Girl Jane" and her journey here on earth.

Thank you for showing me again how amazing is the human heart, particularly the mother's heart. Yes. The mother's heart. Your mother's heart is so important to us all.

That is what your writing shares - your heart.

And I thank you for that. Jane was here.

And Jane continues to be here, in my heart.

Hugs and love,


Me? A Mom? said...

Beautiful. Touching. A fitting tribute. Every time I hold Violet at the NICU, I think about Jane and your family. Thank you for allowing us to be a part of her life.

Anonymous said...

Thanks for sharing. I was so disappointed to not make it to the service so I'm glad that I could read what you had written. Just lovely! I was loving on some new babies in the NICU Friday, Saturday, and Sunday nights so I couldn't make it but I was thinking about you. I'm not surprised at all by the outpouring of love you all have received...You all are just incredible. Jane's missed but I'm glad that I got to know her and hold her in my arms when you couldn't be there. Keep in touch. I have a feeling this isn't the end of the story. I can't wait to see the flowers!

Meredith said...

Tia, thank you so much for posting this for all of us to share, those of us who couldn't be there in person. Just, thank you. For all of your words, and for letting us share this all with you.

Much love to you all, Meredith

Karen said...

Tia, Thank you for sharing this with all of us who couldn't get to the memorial. It is beautiful. I believe it was my great good luck to watch and experience Jane's life from afar. I spent a few minutes at 2 PM yesterday just thinking about Jane and how she affected so many people...she was a wonder and you're right, she will always be a part of us. Thank you for sharing her with us.

Laura Herbert said...

I wish we could have been there to hear you read these heartfelt words. Jane's story is amazing and as I sit here reading your blog (crying my eyes out, I should mention), I am reminded that every minute counts, with every person we meet in life. I am so thankful to have met you and I know my life is better for knowing Jane's story. The love and support you have received from all over the world is nothing short of amazing and is truly uplifting to know how wondeful people are. Thank you for sharing Jane's story.

Cate said...

beautiful. thank you.

Grace said...

I was thinking of you all as we drove in the opposite direction on Saturday, but it's through the power of your words as I sit here at the computer on Monday morning and cry with you and everyone who was at the service, that I really feel the impact of Jane's life and all that she meant (and means) to so many people.

Jane was here.

Kelly said...

That is so beautiful, Tia.

Thank you for sharing it.

Tasha said...

No only has Jane touched my life, but you have too Tia. God bless you all.

Arnold, Worcester said...

Jane was certainly here, down in the chilly basement where the computer is, where I came so often to read your posts and, by so doing, became part of Jane's privileged group -- a true community. I was proud to be among the first to stake my claim as a regular reader, anonymous and picture-less profile and all. Thanks for sharing this with us, Tia. Jane Was Here, and she is missed dearly.


Jennifer said...

Another invisible reader here. My heart aches for you and your family. I've been praying for you - may you find peace in the quiet moments and may God wrap his arms around you all. Jane was here!

Darla said...

Jane was here, in my heart just as you and your family are as well. This was such an incredible story with incredible people. Thank you for sharing your journey. Jane IS here as she will always be. I hope you continue to write you are amazing at it.
Much love from Texas,

Uma Krishnaswami said...

Tia, this is your India postcard speaking. My father found his way from life days before your sweet Jane did. I read your blog through my own days of grieving, so different and yet in some ways it all felt linked to me. Thank you.

Sally said...

I'm so sorry from Turtle Island. If you ever need to talk to someone my mother Mary Haynes runs a bereavement group for parents who have lost an infant. My parents lost my brother Jeffrey. Feel free to email me for her contacts. My email is

Sally- Hardwoods

Brookelyn Bridge said...

Jane was in Montana
(I would love to send you a postcard, but do not see an address anywhere)


A Brave Little Soul

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?"

God paused for a moment and replied, "Little Soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," she asked. "God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunate​ly most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle - for the good of all humanity."

​Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go!! I would love to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!!"

​God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help create your miracle; however they will also share in your suffering. One of these souls is very special. Your sister, Sarah, will be so strong for you…making many sacrifices and endlessly loving you. Two other very dear souls will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you."

God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed."

Brookelyn Bridge said...

found it