Right Track

Every parent hopes their child will grow up to be great.  And happy.  Definitely happy.  Not that they’re mutually exclusive, greatness and happiness, and not that the choice is ours, but if it were up to me, and if it could only be one or the other, I’d want him to be happy.
But there are so many things I want him to be.

We are vigilant, up to date on vaccine research, masters of nutritional information, purveyors of response to perpetual "what's that?"s, cognizant of our own deficiencies.  We make smart, sensible parenting choices.  We encourage him, waving our hands forward as if pushing confidence through the air to him with our “go on, you can do it"s!  At the slightest suggestion that he's disappointed us he often pours out apologies before he even seems quite sure what it is we'd like him to regret.  Our influence on his development is already apparent, simultaneously reassuring and unnerving.

Creating boundaries and enforcing consequences have proven to be more challenging than I anticipated.  Ironically, perhaps, his sister’s disease has made me less protective and more permissive.  I want Tucker to live fully and fearlessly (although certainly mindful of the difference between fearless and foolhardy).

Right now he is happy, and he is great.  And I hope we can help him continue to head that direction.

JEB

Read More

Celia Collection

CaleCamo Jewelry Designs is continuing the sale of their Celia Collection, to benefit BDSRA, through June 12.  Twenty five percent of proceeds from the Celia collection, and twenty percent from all other CaleCamo designs, will be donated to Batten research with mention of Celia in the comment section of online orders.

 Photo credit to Melissa Jones

Also, Maya's Curls Hair Bows and Accessories will continue to offer the Sweet Celia headband, from which thirty percent of sales will go directly to BDSRA. 

Read More

Awareness

Post Edit: We think maybe weather warnings trumped the Hospice special last week.  We haven't heard from NCH PR about a possible rescheduled time, but will share info as we know it...

Channel 6, ABC, filmed a segment at our house last month, focused on pediatric hospice care, with a promise to mention Batten Disease.  The piece is supposed to air during tonight's 5pm broadcast, if you're local and interested in watching.  We'll share the clip here too, as soon as it's available.
J&A

Read More

Take Me

"My watch baseball game... wook at all doze people!"

"Cheeez"

I took Tucker to his first baseball game today.  I think I saw a total of 10 pitches.  He thoroughly enjoyed himself though.

I remember my first baseball game with my dad - the Reds lost to the Braves.  Tuck won't remember this game but I will never forget it.
Andy

Read More

Open House

Be So Beautiful Children's Gifts, Maya's Curls Hair Bows and Accessories, and Melissa Jones Photography are hosting an open house on Friday, May 27th, from 11:00am to 5:00pm, to benefit the Batten Disease Support and Research Association.

Dresses and hair clips, like the ones modeled above by Celia and her cousin Vanessa, will be available at the MJP studio, located at 3872 Lattimer St., Hilliard, Ohio 43026.  Twenty to thirty percent of profits will go directly to BDSRA.  Additionally, a special piece of jewelry, designed by CaleCamo in honor of Celia, will be revealed.  The piece may be ordered on Friday, or online, with a portion of sales benefiting Batten research.

In addition to the Open House, sample and ready-to-ship items from the vendors may be ordered through the websites linked above - shop from home and mention CELIA to ensure a portion of the sale goes to BDSRA!

For more information, and a few more of Friday's promotions, click the "Current Fundraisers" tab at the top of the blog to see the event flyer.

Celie and I *just* met these ladies a few weeks ago, when they included her in a "twirly girl" photo shoot.  Erin, Juliet, Melissa and Shelly have helped our family raise TONS of awareness and have opened their hearts and shared their talents in amazing ways.  We are very grateful.
JEB
Photo credit to Melissa Jones

Read More

Poppy's

A trip, as told by Tuck:

I go to Poppy's house.  I ride the cycle and my throw rocks over the bridge.

 

I see a  rabbit.  I see a chicken.  I see all those dogs.  I see the horses.  

Poppy push me on the swing. 

I see the cows.  I see the red cow and the brown cow and the black cow.  I see the mama cow and the baby cow.  My say "moo."

 

I wear my lucky pants.  I help Poppy catch a big fish.  My touch it!  

My eat a popsicle.  I saw a butterfly.

 

 I saw a baby frog.

My go pee on the bridge.

 I wear my boots.  My play in my mud.  My get very dirty. 

I take a bath in Poppy's big red tub.  Big and red like Clifford!

 

Thank you, thank you.  We received so many messages from so many of you celebrating with us the good news of Celia and Tucker's little brother's health.  
We appreciate your interest in our lives, and your shared happiness for our blessings.
JEB

Read More

Dream Come Blue

We felt it all around us and longed to grab hold, but left it instead.  Hope belonged there, slightly out of reach, in the land of “maybe” and “we’ll see” and not in our hands or our hearts just yet.
Until today.
Today we cannot deny the glorious hope swelling inside. 
Today -finally- expectation, like oxygen, fills every breath.
Today we learned that our baby does not have Batten Disease. 
He is due in November.  And we could not be more relieved, or more elated.
Jenni & Andy

Read More

My Baby

She will not grow up, I think to myself.  I think it while I hold her in my lap, and when I crush her pills.  It crosses my mind when I tighten the waist of her too-big pants and when I brush her teeth.  She will not run barefoot through the sprinkler this summer, or make shadow puppets with a flashlight inside a dark tent.  It comes to me as I watch children her age climb the slide, spin in fancy skirts, lick drippy ice cream cones, perform favorite nursery rhymes.  It occurs to me, again, when I set just three places at the dinner table, and when I pause to watch her sleep.  She will not tease her brother or use words to tell me how much she loves me, or hates me.  She will not grow up, I think as I create small holes in the dirt and fill pots without a curious sidekick.

I think it, and then I whisper to her: You will not grow up, but you will always be my baby.

JEB

Read More

Big Top

 

Read More

Update: Hospice

Celia was released from Hospice last week.  She is still dying, but she has been more resilient than anyone expected.  Hospice staff had been unable to document significant decline over the last several months.  Interestingly, at her un-enrollment appointment last week, her temperature was unusually low and she was vomiting, but that dip was short-lived and she continues to maintain weight, to eat several blended foods, to wet diapers, to laugh occasionally, to sleep well.  There are only minor differences in the care that Celia will receive under NCH Palliative Medicine.  Tucker and I spent part of Mother's Day driving to various pharmacies to collect her prescription refills; we've been spoiled having medications delivered to our home for two years.  Nurse visits will be far less frequent, although we can call and ask someone to come at any time.  And when Celia does show signs of disease progression, she will be readmitted to Hospice immediately. 
This week we took Celia to the zoo, and she rested outside on her bench on the patio with us yesterday afternoon.  She is comfortable, and loved, and lacks nothing. 
Other than a crucial enzyme.

JEB

Read More

Not Much/Much

Sometimes I put on paper what I can't put on in person. Right now I don't have two words to rub together...
But I do have these two to share:

JEB

Read More

Under Control

Celia's hair, wavy and wild, is (relatively) under control, thanks to a gift from Maya's Curls Hair Bows and Accessories, one of several vendors who participated in the local sale last weekend to benefit BDSRA.

We realize, and are reminded daily - every time we think about Celie’s diagnosis, actually - that we have very little control in life.  And yet we’re still trying to accept that.  We spent years operating under the pretense that control is a commodity we could collect, a blanket we could stretch until it safely covered our entire lives.  It takes time to unlearn that kind of thinking.  Each unpredictable event is a chance for us to lament our lack of control.   Or, an opportunity to find strength in surrender.
JEB

Read More

Figments

JEB

Read More

May Flowers

and popsicle chin.

Read More