And the tree was happy.

Bella and I are sitting on the couch reading books. She looked at a page from "The Giving Tree" and said "Happy!" Sure enough, happy is a word on that page. She was able to read all the words on that page, "And the tree was happy."

I remember a time when the thought of her reading anything was beyond imagination. I love how this kid defies expectations. That tree and I have a lot in common. The tree gives everything it has to the boy. Sometimes it feels like I've done the same with Bella. I'm not sure I've sacrificed in the way the tree has, but my life has certainly taken a different path because of Bella and the path has not been an easier one than it would have been if she was a typical kid. But the tree finds true happiness through her sacrifices and service and her giving. It really can be a happy life if we let it.

Still working on the puzzle.

Apparently I am a non-committed blogger. Forgive me. The truth is that a few months ago I wanted to add something to this blog and I couldn't figure out my darn password. I have something like 10 passwords I use for various places and I rely on my sieve-like memory for organizing them and I could not for the life of me get back into my blogger account. Silly me.

The pic is Bella on her first day of 4th grade. Isn't she something?

But the good news is that Miss Bella is doing well. She is happy and healthy and gluten free and seizure free. The gluten free thing is so much easier now than I thought it would be two years ago when we started this journey. Two years? Really? Wow.

I was re-reading my older entries and was struck by my own writing in the entry "Puzzling." I liked my metaphor about the work just to get the darn edge pieces done and being satisfied but still facing the daunting task of filling in the vast and overwhelming middle. We are making progress on the middle. Or at least I am learning to live with the fact that where Bella is concerned, the puzzle may never be completed, glued together, and put up on the wall. (Does anyone do that anymore? My grandma used to do that.) We will see a waterlily or a patch of grass here and there in her puzzle, but I don't know if I'll ever really figure her out.

I am still waiting for the other shoe to drop. I still live in expectation of another seizure, another diagnosis, something awful. I'm working on that. I still sometimes relive those moments where her connection to this world was wispy and tenuous and I am overwhelmed with the fierce realization of how life can be at once fragile and delicate but resilient.

If you came here looking for GF recipes, good luck. But here is Bella's latest favorite treat.

Crust Free Apple Pie in a Jiffy.

Peel and slice two large apples.
Mix with one Tablespoons all purpose gluten free flour, sugar (I eyeball it...maybe 1/4 c or so), about a tsp of cinnamon, and a shake of nutmeg.
Stir that all up and place in two microwave safe ramekins.
Microwave for about 2 minutes or until apples are cooked.
Serve with vanilla ice cream or whipped cream or whatever floats your boat.

This 'n' That

Here's a seizure-free Bella on Easter morning with her basket of GF goodies! Bella hasn't had any more seizures, thank God! She's having a bit of trouble with her seizure meds, but not a huge deal all in all. On the gluten-free-front, I think she got some gluten at some point somewhere. She had some major tummy issues last week. Could've been a bug, too, I guess.

I'll write more soon, but I just wanted to give an update to all those who have left comments or emailed me! Thanks to everyone for your good wishes, prayers, and concern. This is quite the ride we are on.

When Celiac Disease seems like not such a big deal after all.

Bella had a massive seizure 3 weeks ago. She has no history of seizures, this was her first. I found her in her bed at about 10 pm seizing. She was having trouble breathing. The ambulance seemed to take an eternity. Long story short, the seizure lasted 2 and a half hours. She stopped breathing.

Bella stopped breathing.

no.

While The Husband and I waited helpless outside the emergency room, I felt that no matter what other challenges and nonsense we've had to deal with regarding Bella's health and development, it was peanuts compared to this.

The doctors were having trouble stopping the seizure and Bella had stopped breathing.

Brain surgery? no problem. Massive developmental delays? we can deal with it. Celiac disease? please, it's like a non-issue. Anything but this. Please let her breathe. She has to breathe.

And she did. She was intubated for just a couple of hours. Then, mercifully, she breathed on her own. Her waifish little body was so, so tired though. It took a long time for her to recover from such an overwhelming event. She's now on seizure meds, which are GF of course. And I am on high alert. All the time. The questions involved in being Bella's mother are endless.

Is there anything on the ground that she can't see and might trip over?
Does that have gluten in it?
Did I give her her meds this morning?
Are the kids at school nice to her?
Why is her hand shaking?
Is she pale, or am I imagining things?
Is she going to have another seizure today?
How long do I have with this child?

I do not know how the soul of a mother withstands the loss of a child. I was forced to intimately consider the possibility a couple of weeks ago, and I felt something inside me crack that would certainly break if Bella was lost.

So fragile.

It's been awhile. I know.

I know it's been forever since I have updated this blog. Since about 2 people have ever even SEEN the darn thing, I assume the Earth has continued to spin happily on its axis despite this little oversight on my part.

Bella is doing pretty well. Well sorta. The GF thing is humming along and it is just how we live now. She got into some pretzels at her little brothers birthday party, and she definitely reacted. But otherwise, things are good. Well sorta.

She's got this anxiety thing going on that I just can't figure out. After school, all she wants to do is watch a daily marathon of Full House episodes. Seriously. I have had my fill of those wacky Tanners. She sits on the couch giggling at the show and hugs her knees to her chest and rocks back and forth. The rocking concerns me. She's been to a psych and they put her on some anti anxiety stuff that did absolutely diddly-squat. We'll keep on it and get it sorted out.

On the food front, I have been increasingly grateful to the kind folks at Ian's and Amy's. Ian's GF chicken nugget meal and Amy's GF Mac 'n Cheese are really fantastic to have around on those I-couldn't-possibly-cook nights. I do cook quite a bit, and I'm getting pretty good at providing Bella with a wide ranging menu that the whole family enjoys. I will try to post more recipes and successes/failures in the kitchen.

A Very Bella Birthday

Miss Bella turned 9 recently. Realizing that my eldest child is NINE YEARS OLD is a bit of a surreal experience for me. Like it makes me more of a grown up or something ridiculous like that.

Our first attempt at a gluten free birthday party was a smashing success. We had burgers and dogs (no buns for the gf kids) along with lots of fruit and chips and homemade potato salad. GF/CF candy in the pinata. The food was a non-issue, which is just what I wanted.

Bella asked for a Strawberry Shortcake birthday cake. We compromised and I did a strawberry shaped cake with a store bought (7 dollars! what a rip) Strawberry Shortcake decoration on top. I bought a large regular sheet cake because we had 40 people there--big family--and making gf cake for that many people would cost a fortune. Plus I just didn't want to bake that much.

But bake for my Bella? Of course. Strawberries she wanted, strawberries she got. The cake was delicious and many gluten eaters tried it and loved it. It's kind of homemade looking, but whatever. I think it's darling.

Puzzling...

So if I could just put in a little request to the universe...let's just get this kid figured out and be done with it. I am totally over the surprises and puzzles and lack of answers. K? Super.

Bella gets this weird bloating. She gets lopsided. It is not normal. It's only when she has to poop. It's different from the pre-GF bloating. Her torso and her hips get all cattywampus (how do you spell that anyway?) and she can't stand up straight. Lopsided. My kid gets lopsided.

She's also been woozy. Twice now in the last two weeks she has gone white as a sheet, including her lips. She breaks into a sweat and she gets all floppy and almost passes out. Almost. This has happened a few times before in the last year, but twice in two weeks? Oy. Blood sugar? Anxiety? Or it could be (but really, the universe wouldn't do this to me...right?) the rearing of the ugly head of her Arnold Chiari Malformation, which was surgically treated 3 years ago.

I've asked the lovely folks on my yahoo groups related to CD and ACM about the crooked bloating and the almost fainting, and they have come up with myriad possibilities, some benign, some a hassle, some I just don't want to think about. But of course I will think about it. Because that is what I do. I think about this gluten free, speech delayed, still-in-pull-ups-at-night, brain surgery veteran, low vision, woozy and lopsided darling child. So often I have wished that I could just be her for a few minutes. To feel what she feels and know what she knows. It would tell me so much. Give me clues in this puzzle that is Bella.

Bella is truly a puzzle. She is one of those 5000 piece puzzles of something like Monet's Waterlilys where are all the colors are pretty similar and once you dump that sucker out on the dining room table you know you are committed for quite a little bit of time. Put the teakettle on, throw something in the crockpot, turn off the phone and try to find the edge pieces kind of puzzle. With that kind of puzzle you're thrilled to turn them all face up and just find the corner pieces in under an hour. By the wee small hours of the morning, after you've said screw it and turned from tea to coffee, you might have the whole perimeter assembled. There is a sense of accomplishment in sorting out those edge pieces and the with the last snap into place you feel like you've finished. But it's just the beginning. It's just the edge. It gives you a hint as to the colors and the shape and if you're dealing with a Monet or Big Ben or the Muppets or whatever. But it's not the whole picture. The whole picture is a jumbled mess of intricate, interlocking pieces that make your finished edge victory seem like a cruel tease. There is so much left to do. But it's 4 in the morning and you've got to get some sleep. It is hard to go to sleep with that puzzle just waiting for you on the dining room table.

I am so ready to see the big picture. I am growing weary of going to bed each night thinking about the pieces. Sure, I have help. The husband will frequently look at the puzzle and comment or make suggestions or say how nicely it is coming along, and once in a while a good doc will stroll in and snap in a single piece to a cloud or find that missing blade of grass I've been struggling with for an hour, but when all is said and done, this puzzle is mine. And I just want it to be done. For me, but mostly for Bella. She deserves for us all to see the whole picture.