Lost Words, Found Beauty

It’s taken awhile for me to post this. It seems I’ve simply lost my words over the last 11 days. You see, my closest and dearest friend’s brand new baby girl was diagnosed with Trisomy 18. If you want to know all the details, just read them. I’m not going to hash it out here. It’s not my story to tell anyway. But my friend’s child is not expected to be some miraculous survivor.

However. There is beauty in all of this. So I will try to scrape some semblance of written sense together to explain where that beauty is tucked around all the horror, settling all of us down.

I’ve found beauty in this child. I just returned from spending 3 days with her. I cupped her tiny head in my hands, fed her a bottle, and sang to her in the wee hours. Her tiny black eyes met mine, he fingers curled around mine, she rooted and snuggled and wrapped herself around my heart for warmth. I’m in love. Utterly and truly in love.

I’ve found beauty in her parents. They know they were chosen to care for this child, they know they are meant to do this and that they can handle it. They know her time is limited and it is their job to make her existence as comfortable and meaningful as possible. And, with their daughter home surrounded by family and bundled from one set of loving arms to another, it is both of these things

I’ve found beauty in the love that keeps knocking on their door and calling their phones and texting and emailing and Facebooking near and far. Love pours in constantly and at every hour. Selfless, unconditional love. People want to know her daughter. They leave food. They take their girls to the aquarium. They sit on their couch and love the new baby. They love them and love them and love them all. This tiny, sweet girl has created more love in 11 days than I have seen in my 38 years of life.

So, I’m left speechless and without my words. Because I can’t make much more sense of this than that. But maybe you can say something for me. Maybe you can leave words of love and support here for her. Could you do that? Could you tell her how amazing she is? Could you bolster her any way that you can? Could you share a favorite poem she should read to her girl? Anything really. I just ask that it is positive, that you celebrate this child’s life and bring love to her world.

In the meantime, if you want to see how another family found beauty and joy during their time with their child also diagnosed with Trisomy 18, please watch this.

16 comments ↓

#1 Corina on 11.30.11 at 6:32 pm

There is nothing to say to take away the harsh reality of the situation. May love and light surround you. May you find a blessing in each eyelash, create memories as you have them. May you rage when you need to rage, and find strength and grace in the quiet hours. You are amazing, and you are loved, even by those who only know of you.

#2 Victoria Miller on 12.01.11 at 6:08 pm

How blessed your friends and their precious child have you in their life sharing in the bittersweet beauty of these days together. Love will get you all through, and it appears your community has that in abundance.

Every child with Trisomy 18 . . . no matter how fragile their life, or brief their days, forever changes our world.

Sending prayers for gentle and peaceful days,
Victoria Miller
Founder
Trisomy 18 Foundation

#3 ilinap on 12.01.11 at 7:04 pm

You remind us all of what is so beautiful in this world and what we take for granted. So happy this baby girl feels such love and so happy that your friend has you.
ilinap´s last [type] ..The Little Boy Who Touched My Heart

#4 Allie Martin on 12.01.11 at 7:12 pm

Children are our heroes and every child is a miracle. A miracle has no label. Love and nurture your miracle, let your friends love and nurture you.
You are supported and people you will never meet already have your back. You will persevere, yes you will. Yes. You. Will.
All my love. You are not alone, I promise.

#5 Sarah on 12.01.11 at 7:15 pm

I love her so much and have never met her…I think of her every day and know that her life is good because of all the love you’ve described. There is no doubt in my mind that this little girl feels safe and secure, all her needs met. Her parents and all the people supporting them are amazing.

#6 Jen L. on 12.01.11 at 7:56 pm

What a wonderful outpouring of love for this sweet, sweet little girl. Sending so many prayers and such love to this dear family. No matter how long she is here, her legacy has already been created. Bless her and her sweet spirit.

#7 Robyn on 12.01.11 at 9:27 pm

Our favorite bedtime song:
I love you a buschel and a peck, a bushel and a peck and a hug around the neck, a hug around the neck, and a barrel and a heap, a barrel and a heap and you make my heart leap over you dear, over you. I love you a bushel and a peck. You bet your pretty boots I do, boop boop! xoxoxo

#8 Liz Rose-Cohen on 12.01.11 at 10:01 pm

Caroline,

I am so thankful for your telling of your friend’s story. Here’s a song for her. It’s a lullaby from my grandmother.

Love to you.

Liz

At evening when I go to bed,
I see the stars shine overhead.
They are the little daisies white,
That dot the meadows of the night.

And often while I’m dreaming so,
Across the sky the moon will go.
She is a lady sweet and fair,
Who come to gather daisies there.

At morning then when I arise,
There’s not a star left in the sky.
She’s picked them all and dropped them down,
Into the meadows of the town.
Liz Rose-Cohen´s last [type] ..So why DOES my black son wear pink shoes?

#9 Christy Geller on 12.02.11 at 5:16 am

I found out my son would not live at 18 weeks and carried him and his twin to term. He lived for 7 hours. They were the most bittersweet hours of my life, among the most treasured, that I got to know him at all I consider myself lucky. In his eulogy the priest said he taught us more about love in those 7 hours than some will in a lifetime. This is a lesson I would not wish on my harshest enemy, but if you have to go through it, I wish you strength and love for the journey. No mere words or touch will save you a minute of pain, but maybe a thousand words and touches put together will…

#10 Beth on 12.02.11 at 7:26 am

I love her and her family so very much and wish I could be there to hold her and hug each of them in turn. Every night right before bed I say the same thing to each of my children…
(Trace the shape of star in one palm) A star for you to wish on,
(Trace the shape of the sun in the other) The sun for warmth and light,
(Trace a moon on their forehead) The moon for you to think on,
Sweet dreams and a kiss goodnight (Ending with a kiss goodnight).

#11 Ana on 12.02.11 at 8:33 am

I do not know this family, but I know a friend of a friend… I am touched forever by this story of love… I can only say that I am in awe of the amount love shown in this story, I pray for strength and courage for the family. They are truly amazing! I have one son who is 13 and every single day of his life and even before he was born I have sang to him the same words from the book “I’ll Love You Forever” It goes:
“I love you forever, I like you for always, as long as I’m living, my baby you’ll be”…. Even now, this story adds more meaning to the song… God Bless you always.

#12 Erika on 12.02.11 at 10:06 am

Shannon, you are strong and beautiful and courageous in a way that leaves me breathless. You’re daughter is a blessing and is already touching so many lives. You are SO loved and supported from Central Florida. May you find peace and understanding through all of this.

Thinking of you and your family!!!!!

#13 Aimee Giese | Greeblemonkey on 12.02.11 at 10:16 am

I am so sorry to hear this. But what a beautiful post for your friends.

#14 Dallas on 12.02.11 at 11:45 am

So much love to Shannon and family. I carry them in my heart. A beautiful Celine Dion song I thought I would share:

My Precious One”

My precious one, my tiny one, lay down your pretty head.
My dearest one, my sleepy one, its time to go to bed.

My precious one, my darling one don’t let your lashes weep.
My cherished one my weary one it’s time to go to sleep.

Just bow your head and give your cares to me.
Just close your eyes and fall into the sweetest dream, cause in my loving arms.
Your safe as you will ever be so hush my dear and sleep.

And in your dreams you’ll ride on angels wings.
Dance with the stars and touch the face of god
And if you should awake I’ll send you back to sleep.

My precious one, my tiny one, Ill kiss your little cheek
And underneath the smiling moon Ill sing you back to sleep

#15 Pat Riesenburger on 12.02.11 at 9:50 pm

There truly are no words, but you did a helluva job conveying the love, the tragedy, the gift, the bravery. This family is in my prayers.

#16 Jane Heisey on 12.14.11 at 9:45 am

Thank you for sharing this beautiful story with us, which you’ve communicated so well. I will also keep you and this family in my prayers.

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