Words of Hope

I was reading some scriptures the other day and I read this one that had never been particularly meaningful to me before. It's Mosiah 16:8 "But there is a resurrection, therefore the grave hath no victory and the sting of death is swallowed up in Christ." (If you're wondering where this Mosiah is, you can check this out http://www.mormon.org/book-of-mormon/)
I love how that's worded - the sting of death is swallowed up in Christ. It's exactly how I feel. People wonder how it is knowing my daughter is going to die young and I never know what to say exactly. I know I'm going to miss Cicily terribly. I know I'll be happy thinking about how she's no longer bound to her painful, ill-functioning body. But I know that her spirit, the essence of who Cicily is, will one day be reunited with her body as she is resurrected. And her resurrected body will be perfect and she will be able to tell me exactly what made her sad that one day when she was 4 years old and couldn't explain it to me. (I've imagined our long talks - Mom, what were you thinking making me use those glasses - they didn't help a bit, etc. And hopefully - Mom, thank you for making my dolls do goofy things to make me giggle, etc.)
So at times when I start to worry about how I'll miss seeing my Cicily smile and how it will sting a lot to not have her in our home, I think about that sting being swallowed up in Christ. I know Jesus Christ died and was resurrected. I know it was not an easy thing for Him to do. He did it for us. It makes me feel like I can face the not easy thing of having my Cicily gone from me, because, "the grave hath no victory...the sting of death is swallowed up in Christ" for me and for my Cicily.

Change of voice

Hi, it's me - Cicily's Mom. I also go by Janalyn, but I like being known as Cicily's Mom.
When I started this blog for Cis, she was a baby. I just felt like her little story should be told. I always considered this blog to be Cicily's blog; never mine or our family's. I thought maybe when she got older she could start making her own blog entries and writing her own story. Since she likely won't be doing that, and I feel like some of my story as Cicily's Mom should be told, I'm going to talk more about myself and what it's like to be Cicily's Mom. (Some of you may wonder, doesn't she already do that? Well, I probably do more than I intended, but now I'm giving myself full-on permission :) )

Chicks!!!!!

For Christmas this year Cicily, Maya and Sophie got chicks! Cicily loves animals and has been a huge fan of her cousins' chickens for a while. We decided a new pet that Cicily would love and that could give us eggs to eat wasn't such a bad idea. So the girls got 5 baby chicks Christmas morning - Brunhilda (Bruni), Freedom, Liberty (Libby), Gingerbread (Ginger), and Peach. Bruni is Cicily and Maya's favorite. She's the brown one featured in all the pictures below. The chick will just sit on Cicily's shoulder while Cicily snuggles her, it's quite surprising behavior from a bird! Now that the chicks live outside in their coop, the first request after Cis wakes up and the last request before she goes to bed (and multiple other times during the day) is to go outside to see the chicks.

Chick on the head used to be a favorite of Cicily's when they were small enough to perch on her head.
Cis with all 5

The shoulder snuggle

Swinging with Bruni

Appreciation

Thank you to everyone for your thoughtful comments about Cicily's new news. We always love to hear how she has impacted someone's life. Thank you for the prayers, they always help us handle the rough days with more perspective.
Love to you all! Janalyn

I've been avoiding this - MRI results

So the week before Christmas Cicily's favorite neurologist had a heart to heart with Chris and I about Cicily's MRI. Basically it doesn't look any different. There's still no white matter, which is what we expected. The Dr. showed the MRI film to 12 or so colleagues and they all agreed you can't get less than zero! She said if we're seeing a decline in Cicily's abilities, then that's the path we should expect her life to continue taking. Cicily will most likely not live into adulthood. There are no definitives with this type of brain situation. But, the doctor felt it would likely go one of two ways. Cicily will get really sick - a bad pneumonia - and her body won't have the strength or control to heal and recover. Or, her body will slowly lose more and more function. This would mean she'd gradually lose the ability to crawl (which is somewhat happening), sign (also happening), sit, hold up her head, digest food, and so on, and ultimately breathe. As the doctor put it, she'd at some point "stop being Cicily". I hate that phrase, but want to type it instead of say it so I don't cry. I can sometimes talk about her dying in person without crying, but I hate the thought of seeing her "not be Cicily". I can't imagine her living too long without being able to smile, laugh and enjoy life with us. But, there's no way to know how long or when this would all happen.
We were expecting all of this news. Chris and I had both independently thought of aspects of Cis' funeral and what it would mean to not have her around. It still sucks to hear it and discuss it all with a doctor. It's also kind of relieving to have some sense of how Cicily's life may turn out as it's been a huge cloudy mystery since the white matter discovery 2 years ago.
I think back to how I pictured her life shortly after she was born: "By the time she's 20, you'll never know all she's gone through, she'll have a 'normal' life. It's ok if she can't talk 'on time', at least she'll still walk when she's 'supposed' to." Then when she was 3: "Well, she doesn't have white matter, but she'll just take longer to talk and walk than we expected. At least she learns as fast as other 3 year olds." Now that she's the ripe old age of 4: "She's going to die, possibly slowly and painfully. At least she smiles and sincerely enjoys life (at least - for now).

best friend

Cicily has been so lucky to have her nurse Kelly to come play with her and take care of her for the last year and a half. Kelly has spent many hours reading Cicily books, swinging her on swings, carrying her around the house and parks, suctioning her trach, cutting guaze, doing her beautiful hair. . . and most importantly loving her. Kelly is too skilled as a nurse, however, to limit her talents to just one lucky girl! So she recently accepted a job at a hospital. We're sure Cicily will miss playing with Kelly almost every day like she has done. We never expected when we decided to have a nurse in our home taking care of our Cicily that she would become part of our family and love Cis like Kelly does. You will still be welcome to come and play with Cicily anytime you want to Kelly!

Kelly and Cicily at Cis' 4th birthday party

A day at the park

Getting worse

Cicily is scheduled to have another MRI of her brain on Dec. 2nd. Chris and I, Grandma DeEtte, and some of Cicily's therapists have noticed an increase in "shakiness" in Cicily in the last 9 months or so. She doesn't have enough fine motor control to sign as well as she once could. She is too wobbly to sit on any kind of chair without support. She still crawls, but in a more sitting posture and gets tired of crawling more quickly. Those are a few examples.
So, Cicily's neurologist (well, our favorite neurologist of the 6 or so she's seen) agreed it would be a good idea to have another MRI done. Maybe somehow eventhough she had no white matter to start with at 2 years old, it could somehow get worse?? Who knows!
We're anxious to see if the MRI shows any change in her brain in the last 2 years.