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