3.19.2009

Decoded

We've been accused, lovingly, of blogging cryptically. Maybe we haven't shared the whole truth. We certainly don't intend to sound whiny or to elicit sympathy, and perhaps that's why we avoid some factual postings. But we do realize, for those readers who don't get to see Celia, our entries may be misleading. Allow us to share more specific details, and feel free to ask pointed questions. If you're reading our blog, we imagine you love Celia, are praying for her comfort, and hold our family in your thoughts. You deserve information.
The teacher in me wants to state things positively, like "Please walk" instead of "Don't run," and to focus on what Celia can do rather than dwell on what she can't. In an effort to be honest, I'm resisting that urge here...

By appearances, Celia is not a normally developing two year old. She drools. A lot. And she waves her arms around randomly, has trouble focusing her eyes on things, bobs her head.
She doesn't walk, doesn't stand, doesn't crawl, and has difficulty sitting unsupported.
She doesn't have much purposeful movement; she can't grasp a toy or take your hand or feed herself or put her pacifier in.
She doesn't talk, and when she does make noise it often sounds like she's frustrated or sad.
She often seems irritable or agitated. Her body is stiff, which makes things like getting dressed stressful for her.
She aspirates on thin liquids, so must drink things that have been artificially thickened. We have to mince her food, because she does not chew. We now have a suction machine at home.
She takes multiple medications - 5 mLs of this, 8ccs of that, a quarter tablet of something else to relax, a pill for pain... and we have "emergency meds" in the cabinet were she to have a really scary seizure.
She is now under the care of Children's Hospice.
She still has trouble sleeping, so someone sleeps with her. On average she might go to bed at 10:30,wake several times through the night, and wake for the day at 9ish. She's fairly lethargic during the day. Often she's happy to rest in a bean bag or on the couch, but she prefers to rest on someone.
She doesn't see very well. We suspect she knows people close to her her by their voice and scent.
She is like a 30 pound infant...

Please don't misinterpret this list as us complaining. We try not to complain, try to enjoy our time with Celia. Most days, enjoying her is effortless. She's pretty enjoyable. Like the rest of us, Cel has good days and not so good days... Caring for her can be challenging, but we're up to it. Watching her regress, thinking about what could've been, is depressing, but we can handle it. And for those of you reading, your interest and support and love help us more than you may know.Sometimes we hesitate to post pictures of Celia, unless she looks "normal." It's hard to capture a "good" photo of her these days. Even though she's still stunningly beautiful....

JEB

14 comments:

The Wendels said...

You are truly amazing parents and spouses. We look to you as role models in our family.

Friend Family said...

God could not have blessed Celia with better parents! You two are truly remarkable!

Christy said...

I love reading your blog. Thanks for sharing about a day in the life with Celia. I know it's hard.

Alison said...

I know that was difficult to share and appreciate you letting us know. You two are amazing parents. Celia and Tucker are in loving hands.

courtney said...

Hi knew you when we were in grade school I think our sisters were in gifted together. Have been praying for celia and your family. Your writing is beautiful and eloquent. I don't think you could ever be accused of complaining. Your strength is amazing and your love for your beautiful little girl is evident. You are a wonderful mommy.

The Vehorn Family said...

The love of a parent is stronger than anyone could ever explain. Still, if we needed an example, I think the Betz family would be more than qualified for the part.

Poppy John said...

Again, you two are such "perfect"
parents! Have I ever said...
LOVE to all 4?
Just curious.

rht said...

Celia is often determined to roll over, to sit up, to help hold her cup... when she's worn out and snuggles in against you and makes those "I'm-sleepy-settling-in-unk" sounds, she invites you to share a special peaceful time... watching her awaken, and yawn and stretch is one of my favorite things to do. Celia perseveres with fortitude... just like her loving parents.

johncwelch said...

Lots of love and hopes for good health, happiness and as many of those gorgeous smiles as Celia can give from Down Under!

Looking forward to seeing you guys this fall for Buckeye football!

All the best,
John W. (Trauma Boy)

Beth Ann said...

Sometimes the truth hurts. But we are stronger and relieved of some of our burden when we share it with others. As amazingly strong and stoic as you all are, it's okay to "let it out" sometimes. I am in awe of your strength each and every day.

Joce said...

There can be no doubt as to why people love Jenni & Andy and their families....
Ditto for all the chimes that come to this post.

Tsquared417 said...

Simply said...you are an inspiration and amazing to me. Thinking of you all very often and praying for peace for all of you.

The Talbert Family said...

Lots of prayers still going up for you all.

angela said...

Your writing is so eloquent; your openness is demonstrative of your strength and character. Celia and Tucker have two outstanding parents! Please know that you are in my thoughts and prayers.