1.19.2012

Do This?

It ended the way we thought it might end.  Better, even.  But that doesn’t make it hurt any less.  What does ease some of the pain, however, are your words and deeds.  Thank you so much for wrapping our family in such love, for sending all your sympathy.  Please, though, don’t express condolences today.  Please do this instead: Share a memory of Celia, or relate a lesson you learned from her.  Tell us about something nice, something simple but kind, that you’ve done for someone in her honor.  Give us, if you will, something to hold on to when we wish we could hold her.
J&A

15 comments:

Maggie said...

Jenni and Andy, as I was driving into work this morning, I was thinking about last Friday when Griffin and I sat down to watch the last speech that Martin Luther King, Jr. gave. He learned about him in school and was so excited to see him talk. He asked if we could meet him and I said that he was in heaven. But we could remember him and how wonderful he was and what he sacrificed for us. AND we could learn from him and live life the way he recommended.

Dr. King's last words struck me. His sacrifice made such a huge impact, even for people that didn't "meet" him. And even now, while in heaven, he is touching lives every day. His last words during his last speech:

"Like anybody, I would like to live a long life. Longevity has its place. But I'm not concerned about that now. I just want to do God's will. And He's allowed me to go up to the mountain. And I've looked over. And I've seen the Promised Land. I may not get there with you. But I want you to know tonight, that we, as a people, will get to the promised land!

And so I'm happy, tonight.

I'm not worried about anything.

I'm not fearing any man!

Mine eyes have seen the glory of the coming of the Lord!!"

I will remember Celia for her sacrifice for us, for her bravery, for her innocence and spirit. My children will be impacted indirectly by the lessons that I learned from her: to love and LIVE each and every day, to celebrate support systems and to HOPE.

Thank you Celia and thank you Betz family for this gift.

Groves said...

Maggie - perfect and true. So rich, so right.

Celia and Betz,

Dulcius ex asperis:

"Sweetness Out of Difficulty"

Also, Hupomeno:

"Patience; to bear up under pressure."

Celia put a face and eyes and smile and life to what I already believe, fully: that every human being matters and is valuable and loves and receives love and is beyond price. The way you love her, the way she loves you - I won't say "loved," because that relationship is not ended by death - is a picture I long to see the whole world mirror.

"I walked a mile with Pleasure.
She chattered all the way;
But left me none the wiser
For all she had to say.

I walked a mile with Sorrow,
And ne'er a word said she;
But, oh! The things I learned from her
When Sorrow walked with me." {Robert Browning}

It was not worth all this richness for you to lose Celia. I still hate Batten Disease.

But you can be very sure Celia's witness matters just as much as Dr. King's. I have no doubt he would say the same.

No forgetting,

Cathy in Missouri

Anne Caughey said...

Celia, and your family, have taught me to celebrate who Naomi is, not what she is not, and to see the beauty that is inherent in a life, no matter how capable or limited the person living that life may be. I struggle to hold onto those lessons on the days when Batten's gets me down, but I hold on to them none the less.

Beth Ann said...

I know the theme has been what Celia's fight with Batten disease has taught people. I also know that her fight stole the majority of her time with you. One thing I've always forced myself to do with my own loss, was to not forgot the times "before". Before disease, before heartache, before anger, before the loss. Some memories I have of Celia begin when she was still a bump in Jenni's belly. I remember attending Jenni's baby shower and learning that you planned to decorate the nursery in white, all white linens, lots of white clothes, white crib accessories, etc. I remember thinking "Oh boy, is white NOT the color for newborns :)" I also remember at that shower learning the story behind Celia's name and the great ladies for whom she was named. I promise she lived up to those who came before her and then some in her short life. I too, remember hearing the dog food story...and laughing. I remember stories of a little girl left to her own devices one afternoon and forced to eat Cheerios off of a semi-clean floor, so her Mom could read just one more page ;) And finally I think of a warm evening in June at a park when Celia sat in the grass and watched rambunctious boys run around her, stopping to talk to her occasionally. She was content to let them be the obvious spectacle, but secretly she was the real star, the sweet one they gravitated to. These are the things I remember about Celia.

Tommie said...

I only 'met' you all through your blog a few months ago. I will say, though, that finding you and reading about Celia and your love for her has changed my perspective on parenting. My younger daughter has 5p- syndrome, which just means that she's missing part of her fifth chromosome. But in the beginning, when we first got this diagnosis, I was sad. I worried about her and the life she'd have. But I realize that we're so blessed to know her and have her in our lives and she's fiesty and beautiful and lives life to the fullest. And I cherish every single day of being her mother. Your family taught me to do that. Celia taught me, a stranger, to love a little more, to speak a little kinder, to hug a little tighter. She made the world a better place for everyone who met her, whether face to face or through this great big thing called the internet.

Thank you for sharing her with us all.

Anonymous said...

"Being deeply loved by someone gives you strength, while loving someone deeply gives you courage."
-Lao Tzu

I never met Celia but I heard her story through her Grandma Jan. I have only worked with her a short while and that was time enough to hear of Celia's story many times over (that's how much she is talked of). And even though I am a stranger to her she taught me more about the appreciation of life and the love of family than anyone I have met. Through her Grandma's words a beautiful tapestry was woven about this little girl and I could see how the deep love of her family made her strong despite all she faced. And through those same words I could see how loving her so deeply gave courage to those that stood by her in the toughest of times. It is my hope that the Love Celia taught you to share for one another will continue to give you courage through the most difficult times.

Kristen said...

I had the pleasure of knowing Celia through working with her aunt, Kate. Although I never had the privilege of meeting Celia, the amount of love, support, and positivity surrounding her is a beautiful reminder of how life should never be taken for granted. The amount of perserverance expressed by Celia, your family, and those who knew and loved her is inspiring. My husband and I thank Celia and your family for keeping our blessings in perspective and reminding us of our appreciation for each other and life. In honor of her life, we donated to BDSRA and Nationwide Children's Hospice and wish you all the wonderful memories you shared with Celia.

Anonymous said...

Celia inspires me to clearly draw attention to rare diseases in the biology courses I teach at a prestigious liberal arts college. One of my students may just be the one to find a cure for Batten Disease in the years to come.

Sarah said...

Celia taught me to hang onto moments of beauty, to love as deeply as possible, and to let others know how much I cherish them. Because of Celia I hold onto every single second I work with "my" kids at a camp for severely disabled children, and I try to make every moment of theirs as filled with happiness and peace as possible.

Thank you for sharing your beautiful girl with us.

Ninja Cate said...

In honor of your wishes, we made donations to the BDSRA in honor of several family members in lieu of material gifts. We also printed out some of our favorite Celia blog pictures and gave them along with our abridged version of her-and your-brave story. Even though Zoey has only known her through my reading your words and pictures, we find her living deep in our hearts as though she were our own family or dear friend. Celia has taught us bravery in the face of all foes, grace under all circumstances, and undying, unyielding, unwavering, unconditional love. It may seem silly-not to us at all-but Zoey and I have been snow talking non-stop since Halloween and we have had yet to see a flurry. And yet, in the late hours of January 15, it was a cold night, and the flurries didn't just dust the earth-they enveloped it and all that was upon it. It is now late 1/19, and there are over 2 feet of snow on the ground. The trees look cosmetically dusted, the snowmen and snow angels are pristine, and as a result of the road conditions there has been a true and genuine peace and quiet in the air. And we think its Celia. Rather, we know it is Celia We have had more peace, quiet and beauty thrust upon us than we know what to do with, and I think that there is no coincidence there. We'be been calling it "Celia's snow" and singing thanks for it and praying it stays as long as it can.

The march after my dad passed on-on march 13 to be exact-we just happened to get 16 inches of snow while Sara, Mary Elizabeth, and Rosellyn were visiting. We ran outside and said "It's dad!" And we loved and rejoiced in his presence. I only mention this because we have felt the same thing with "Celia's snow," and I hope that our being able to see her beauty and love and your beauty and love brings even just a touch of comfort to you all.

Whenever we see snowflakes now we will say loudly , "It's Celia!" and remember how spectacular she will always be.

Thank you, thank you, thank you for so bravely sharing her life and your lives with the world. The world truly a better place after having all of you in it. We send our warmest hugs and warmest love.... Wish we could be there....

Ninja Cate said...

In honor of your wishes, we made donations to the BDSRA in honor of several family members in lieu of material gifts. We also printed out some of our favorite Celia blog pictures and gave them along with our abridged version of her-and your-brave story. Even though Zoey has only known her through my reading your words and pictures, we find her living deep in our hearts as though she were our own family or dear friend. Celia has taught us bravery in the face of all foes, grace under all circumstances, and undying, unyielding, unwavering, unconditional love. It may seem silly-not to us at all-but Zoey and I have been snow talking non-stop since Halloween and we have had yet to see a flurry. And yet, in the late hours of January 15, it was a cold night, and the flurries didn't just dust the earth-they enveloped it and all that was upon it. It is now late 1/19, and there are over 2 feet of snow on the ground. The trees look cosmetically dusted, the snowmen and snow angels are pristine, and as a result of the road conditions there has been a true and genuine peace and quiet in the air. And we think its Celia. Rather, we know it is Celia We have had more peace, quiet and beauty thrust upon us than we know what to do with, and I think that there is no coincidence there. We'be been calling it "Celia's snow" and singing thanks for it and praying it stays as long as it can.

The march after my dad passed on-on march 13 to be exact-we just happened to get 16 inches of snow while Sara, Mary Elizabeth, and Rosellyn were visiting. We ran outside and said "It's dad!" And we loved and rejoiced in his presence. I only mention this because we have felt the same thing with "Celia's snow," and I hope that our being able to see her beauty and love and your beauty and love brings even just a touch of comfort to you all.

Whenever we see snowflakes now we will say loudly , "It's Celia!" and remember how spectacular she will always be.

Thank you, thank you, thank you for so bravely sharing her life and your lives with the world. The world truly a better place after having all of you in it. We send our warmest hugs and warmest love.... Wish we could be there....

Kirstin Stenberg said...

I carried your Celia in my heart yesterday, and today. She was there with us when I interacted with my children, and the reason I left the house a disaster so that I could just enjoy being in the presence of my girls. I spent my free time re-reading every blog post, and poured over every sweet picture, trying to experience all I could of all you shared with us.

Your family is on my mind, and in my thoughts during this difficult time.

Debi said...

Beautiful Celia,
She stole my heart from the moment I saw her with her auburn ringlets and the smile of an angel.
I loved her trust and love and strength and acceptence and love for her family that was expressed with words and actions and ultimatly without words. Love flowed out of her being because she was surrounded by love.
She taught Tucker and Tollie about love and compassion and inclusion and hope and to appreciate each day. I loved the pictures of Celia and Tucker together and most recently, Celia and Tollie.
She taught mommy and daddy to trust and walk by faith and love and hope in the face of uncertainty. The hearts and lives of her family and friends, near and far have been changed for the better forever because of her life and light.
I will never be the same after knowing Celia. She has given me a deeper compassion, greater faith and an awareness of the treasure of each day.
We rejoice in the gift of the life of Celia Eleanor.

Debi said...

Love and hugs and prayers,
Debi

Meg said...

I had the pleasure of meeting Celia at one of the Annual Walks.. the one at Alum Creek. I met your story through nurses at OSU and ever since I have been a silent follower.. Jenni your writing has touched my heart since the first blog post I read.. and that was years ago. I want you to know I will always keep Celia's story and life with me wherever I go. I have learned so much that writing a comment is hardly sufficient to express it all.. but please know that following your journey has blessed my life.. Celia has blessed my life. I will leave you with one of my very favorite quotes that brings me such peace. Thank you for sharing Celia with us.. they claim 'don't hog your journey, it's not just for you'.. and the Betz family journey has taught me so much.

“If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.”
- Winnie the Pooh

Sending you love & prayers..

Meg Sonnenberg