Harper's memorial

KERI'A: The pattern of life has been torn apart.  What was to be whole, is now broken.  Tearing a ribbon, a symbol for the fabric of life, expresses the tear in our heart.  In moments of sadness, loss, and despair, the gift of tears and the freedom to weep can be a blessing – an experience of the awesome and awful truth of life and death. 

Barukh Atah Adonay, Eloheynu Melekh HaOlam, Dayan Ha-Emet

Opening

Healer of the brokenhearted:

We mourn today; we grieve with You.

For the dream that could have been

For the glory of new life … that vanished like a breath.

We mourn that a sweet baby, Harper Wolinetz,

Will never knew the joy of simple life

Will not grow to fullness in the love of her parents Carrie and Lou

Or  her big brother Shea, her grandparents, aunts and uncles, and others.

Before she was truly here, she was gone.

How brief this brush with life,

How painfully short a stay.

If I were here, what would I say?

Lorraine Lehman-Jones

Yes it is true that I never got to see all that this world holds.
The flowers, the trees, grass - or a bright sunny day.
Not even the smiling faces of my loving family.
But in my heart I have seen all of these things, even in my short time.

It is also true that I never got to feel the many things that you take for granted ...
The heat on my face on a hot summer's day,
Finger paints and crayons I will never hold in my hands.
But I did feel the loving arms of my Mommy and Daddy cradling me gently.

I never got to hear all the sounds that make most hearts sing,
The laughter of a loved one, or the sweet song of a bird,
Songs on the radio and the words "I love you" are to me a mystery.
But the soft touch of my Mommy and Daddy's hands shouts to me all of this and more.

I will never know the joy of running through a field of flowers,
Never will I roll down the side of a hill, too dizzy to stand.
Hide and seek, tag and catching ball I will have missed,
But in my mind I will do all of these things and more.

You all may see it as me missing out on all these things by leaving you so soon,
But where I am going I will do, see and hear everything you do and more.
I will only think of good things - for in my short existence that is all I have known.

So don't cry for me, I will do all that you have wished for me and more. 

Too Soon   (by Mary Yarnall)

This was a life that had hardly begun
No time to find your place in the Sun
No time to do all you could have done
But we loved you enough for a lifetime

No time to enjoy the world and it's wealth
No time to take life down off the shelf
No time to sing the songs of yourself
Though you had enough love for a lifetime

Those who live long endure sadness and tears
But you'll never suffer the sorrowing years
No betrayal, no anger, no hatred, no fears
Just love - Only love - In your lifetime.

She is gone - David Harkins

You can shed tears that she is gone
Or you can smile because she has lived

You can close your eyes and pray she will come back
Or you can open your eyes and see all that she has left

Your heart can be empty because you can't see her
Or you can be full of the love that you shared

You can turn your back on tomorrow and live yesterday
Or you can be happy for tomorrow because of yesterday

You can remember her and only that she is gone
Or you can cherish her memory and let it live on

You can cry and close your mind, be empty and turn your back
Or you can do what she would want: smile, open your eyes, love and go on.

NAMING PRAYER

Comforter of All, be present for us in this moment of loss.  Stand with us as we stand with Carrie and Lou, who when looking forward to the miracle of life, have encountered the darkness of death. 

Whatever life is, life is unpredictable.  Our blessings and troubles often come without warning, and appear without a reason.  But life has the power to transcend loss and love contains the strength to overcome death. 

We pray that the life force of Harper, who could not survive in this world, be returned to the treasury of life.  May her soul journey to realms beyond imagining, and yet remain in the hearts of those who will always be her family. 

May her name be forever remembered among our people as:

Kinnor Miriam bat Shira v’Eliezer.

Barukh Atah Adonay, zokher y’tzurav l’chayim b’rakhamim.

To Harper, with love from Mommy & Daddy:

L - Usually, eulogies involve sharing memories about the person who lived and our experiences with them. But it’s hard to do that when you are remembering a baby who only lived for 17 days and who most of you never met.

C - We can tell you about how Harper liked to hold our hands, how she sounded like a dog’s squeaky toy when was content and like a bird when she was crying, or how exciting it was for us on those rare moments she opened her eyes.  We can tell you how we began calling her “bean” in utero – not the most original baking baby name - and never stopped because the nickname suited our tiny little one. Or how glad we are that she got to meet her grandparents and so many other friends and family in her short time on earth, or how grateful we are that we were holding her and loving her at the end.

L - But what we’re really left with, more than two and a half week’s worth of memories, are the lessons Harper has taught us. So many people have reached out to us to tell us how our little Harper bean has touched their own lives. And it’s important to us that something positive comes out of Harper’s life and her death.  We began to realize that on the day after her birth, when we were still reeling from her diagnosis.

C - We wanted to share with you some of the positives our Harper bean gave us and then invite you to share her impact on any of you.

·       L --Harper brought us closer together.  We have had so many honest, raw conversations in the past three weeks and realized how truly in sync we are about what we want for our family, what we truly believe in, and what’s important to us. In a 17 day whirlwind, we went from imagining our daughter’s wedding to confusion about her gender to thinking about raising a child with major disabilities to realizing we were destined to lose her very soon.  From planning to care for her to dealing with her death, we have been amazed at how we thought and came to similar ideas and wishes.  And how we have been able to support each other through every tearful moment.

·       C -- Harper has also brought our families closer together. We’ve heard from nearly every living relative we have. Our parents have talked more in the past weeks than they had in years. Our sisters and Uncle Mark have provided childcare, shoulders to cry on, and perfect ridiculous presents when we needed them. And this has driven home how important family is to us – we hope there will be more children in our family’s future.

·       L- Harper has restored our faith in the kindness of humanity.  From the NICU staff, the hospice staff, Shea’s daycare teachers, NIH SLOS researchers, guy working at Cosi who went next door to get ingredients from Starbucks when Carrie really needed a Frappuccino, and everyone who has readily handed us a tissue when we needed it – we have encountered so many people who have been there to help us every step of the way and have themselves been touched by our little bean.

·       C- Harper has reminded us of how fortunate we are in our friends . So many of you have reached out – some with comforting words or hugs, some with assistance, some with cookies and food. Some we hadn’t talked to since high school. We heard stories of love and loss that we never knew. We were reassured time and again that we would get through this and that our friends would be with us all the way.

·       L -- Harper has taught us to be more patient and kind. I find I get less pissed off when someone cuts me off on the beltway or inconveniences me. Maybe they are going through something in their lives. Maybe they’re just a jerk. But I have to give the benefit of the doubt. I’m nicer to strangers.  A kind word can make a day.

·       C -- Harper has opened our eyes to a world of disability and needs and community. Before April 18^th, we had never heard of SLOS, nor did we much experience or exposure to dealing with a child with serious special needs. From the very first day, the SLOS family reached out to us with support, kind words, useful information, and virtual hugs. They never let us feel alone in Harper’s diagnosis and the smiling faces of their children made us smile during some very dark times. As one SLOS parent said very early on, “You are part of our family now and we are here for you.”

·       L -Harper has showed us what really helps in times of crisis. When our friends and family have been dealing with difficulties, we joined the masses in offering sympathy and support, but have hesitated to take action for fear of intruding. Those who stopped at our house unannounced, sent food unrequested, showed up to plant our garden or clean our house, called to say they were thinking of us:  thank you. Every day was overwhelming and we had no idea what we needed in any given minute or hour – your actions meant the world to us when we were paralyzed with our own grief. In the years to come, we are now better prepared to help our own loved ones get through times of grief.

·       L -- Harper has reminded me to take care of myself: Like many, I’ve known for awhile that I need to take better care of my physical and, especially, mental health. Going to a counseling session which I could never quite find time to do was a first step, and I intend to see it through.

·       C- Harper has made us appreciate her big brother, Shea. We have always agreed (and I think this overcomes even parental bias) that Shea is a great kid. He’s happy. He’s kind. He’s easygoing. But the past weeks would have been 100x harder without him. To give us big hugs. To force us to roll on the floor of our new basement laughing. To tell us how he would hold Harper’s hand until she was better. To ask mommy to stop crying. We always took his great health for granted, but knowing there was a 25% chance SLOS could have happened to him makes us more thankful each day for our Boo who we love.

 L - We never imagined the first social event about Harper would be her memorial service. But we are typical proud parents in boasting about our little girl’s extraordinary accomplishments. In a mere 17 days, she has given us a lifetime of lessons on love and loss. 

C - As we both celebrate and mourn Harper, we wanted to give any of you who wished the opportunity to share if our little girl impacted your life, too, in a meaningful way. 

El Malei Rachamim – Hebrew/English text

El malei rachamim           God filled with mercy

sho-khein bam'romim  who dwells in heavens’ heights

ham-tzei m'nuhah n'khonah tahat kanfei ha-sh'khinah,

bring to perfect rest under the shelter of your Presence,

b'ma-alot k'doshim u't'horim / amid the ranks of the holy and the pure

k'zohar ha’rakiya maz-hirim / who still shine like the radiance of the sky,

et nishmat Kinnor Miriam bat Shira v’Eliezer

the soul of Harper daughter of Carrie and Lou

she-halkha l'olamah,  / which begins its journeys in other worlds.

b'gan Eden t'hei m'nuhatah.   //

Ana, ba-al ha-rahamim,    Please, God, source of mercy

hassti-reha b'seiter k'nafekha l’olamim, // shelter her in the shadow of your love forever

u-tzror bi-tzror ha-hayim et nishmatah, //  and bind among the living her precious soul

Adonai hu nahalatah,  v'tanu-ach b'shalom al mishkavah,   //

and may she find peace in her resting place. 

v'nomar amen.      And let us say:  Amen.

MOURNER’S KADDISH

Yit-ga-dal v'yit-ka-dash sh'mei ra-ba.  B'al-ma di-v'ra chi-r'u-tei, v'yam-lich mal-chu-tei, b'cha-yei-chon u-v'yo-mei-chon u-v'cha-yei de-chol beit Yis-ra-eil, ba-a-ga-la u-vi-z'man ka-riv, v'im-ru a-men.

Y'hei sh'mei ra-ba m'vo-rach l'a-lam u-l'al-mei al-ma-ya.

Yit-ba-rach v'yish-ta-bach, v'yit-pa-ar v'yit-ro-mam v'yit-na-sei.  V'yit-ha-dar v'yit-a-leh v'yit-ha-lal sh'mei d'ku-d'sha -- b'rich hu.  L'ei-la min kol bir-cha-ta v'shi-ra-ta, tush-b'cha-ta v'ne-che-ma-ta, da-a-mi-ran b'al-ma, v'im-ru a-men.  Y'hei shla-ma ra-ba min sh'ma-ya v'cha-yim a-lei-nu v'al kol Yis-ra-eil, v'im-ru a-men.

O-seh sha-lom bim-ro-mav, hu ya-a-seh sha-lom, a-lei-nu v'al kol Yis-ra-eil, v'im-ru a-men.

Tears in Heaven - Eric Clapton

Would you know my name 
If I saw you in heaven? 
Would it be the same 
If I saw you in heaven? 
I must be strong and carry on 
'Cause I know I don't belong here in heaven 

Would you hold my hand 
If I saw you in heaven? 
Would you help me stand 
If I saw you in heaven? 
I'll find my way through night and day 
'Cause I know I just can't stay here in heaven 

Time can bring you down, time can bend your knees 
Time can break your heart, have you begging please, begging please 

Beyond the door there's peace I'm sure 
And I know there'll be no more tears in heaven 

Would you know my name 
If I saw you in heaven? 
Would you feel the same 
If I saw you in heaven? 
I must be strong and carry on 
Cause I know I don't belong here in heaven