Sunday, January 27, 2008

This is me, pretending I don't care.

This food thing. It's getting me. I don't know how to not care about it. I care. I care so much it makes my head explode. But I bite my tongue and out on my blank, couldn't-care-less face.

Food. It is fundamental. You breathe, your heart beats, you eat. It is how life is maintained. And my kid doesn't want to do it. At all.

I've talked a lot about this recently, some on-blog, some off-blog, some in person. I've had a million rapid fire thoughts on it all. And after all that processing this is my number one worry; she simply does not WANT to eat. She has no use or desire for it. The thought of it is actually so terrible to her in most situations that it activates her fight or flight reflex. Food causes this reaction.

If it was a sensory problem, we could tackle it in OT. But it isn't. She is refusing even her SAFEST foods. Because she just does not want it.

If it was low oral tone, again, we could tackle it in therapy. She could do oral exercises to make it easier to eat. But it isn't that eating is too hard, it is that she has no desire to even try. She doesn't even want to slurp up baby food.

But the one thing I cannot fix, no matter how much effort I put into it, is the fact that she just doesn't want to eat. No amount of therapy can create an appetite or innate desire for food.

Therapy can tackle outward issues, but it isn't magical cure.

I know, I know. She is getting her nutrition and that is what matters. She is taking her bottles and the Pediasure is doing the work she is unwilling to do. And she's happy with this arrangement. But I'm not.

Feeding children is what parents do. Mothers' bodies are actually physically designed for this purpose. It is literally coded into our DNA. And yet, here I am, not able to feed or encourage my child to eat. I know this is the right choice, but it doesn't make it feel any better. Even though it is such a natural thing I understand that medically, it isn't always possible. I understand it. It doesn't make it any more pleasant to experience. I know it isn't anything we've done. I know that pushing it makes no positive difference. Logically, I know we have done and are doing everything we can, but emotionally, it feels like I'm failing her at some basic level.

There is more to it, but I'm just not quite ready to walk through it.

This morning, she asked for bread. We gave it to her. She took a bite, dropped the bread, and pulled the bite out of her mouth and tossed it. And we did.not.react. 0 calories.

Last night, at the in-laws, she ate two chicken nuggets. 80 calories. Something.

Friday, she ate one bite of pretzel and stuck her fingers in some parmesan cheese and licked them off. I don't know how many calories that is.

Thursday, she ate three nuggets (unless she fed parts of them to the dog, which might be a possibility, let's pretend like it isn't though). By far the most she has eaten a long time. 127 calories.

You might think, "Oh! Look at that! She likes nuggets!" and you are right. But Thursday at dinner, we made her nuggets again and she didn't touch them. We could (and have tried to) serve her favorite foods at every meal. It's a no go. She plays at eating, nothing more. When it strikes her fancy, she'll give it a go. Otherwise, there is no need for it. Physically, she has no need of it. And you can't sustain life like that.

In 5 days, she has eaten:

2 potato smiles
5 nuggets
1 bite of pretzel and a finger full of powdered cheese

207 calories out of the roughly 5000 she needs in 5 days. 4%.

I look at that and think "That's great!" and then a half-second later, I think, "How in the world is that great?" Most kids (not ALL) eat that 3 times a day, 7 days per week. She is eating 4% of what she needs, on a SUCCESSFUL week. And we are pleased? The hardest part of this is the mental/emotional disconnect. I can see the situation emotionally and I can see the situation logically and the two never meet. I know we are doing the best we can for her. I know that these paltry attempts at eating are amazing. But I feel like we should somehow magically be able to fix this for her, I feel like our inability to do that is a failure. She can physically eat, so what are we doing wrong?

It is medical. Her inability or unwillingness to eat is as medical in origin as her hearing loss, and yet, her deafness doesn't make me feel this way. I know that fixing her hearing loss is outside of my abilities. The best I can do for that is buy her hearing aid and put it on every day. Her feeding disorder is exactly the same, the best I can do for her is buy Pediasure and put it in her bottle every day. But giving your child food is such a fundamental part of this parenting gig that it seems like it must be fixable. And it isn't.

I really don't know how we ended up way back here.

(I've never made requests about the types of comments I receive before, but on this one, please, please, no suggestions on how to fix it.)


Girlplustwo said...

oh, sister. i'd be losing my freaking mind. you have every right to be at wits end with this, b/c you are right - it goes against the grain of who we are as mothers - to nourish, to feed.

i'd be losing my freaking mind. so brava, woman, for maintaining that grace of yours but you certainly aren't obligated to. the counting, the calorie numbers you keep in your head, the watching, i can't even imagine.

i am so, so sorry you are having to deal with this.

Anonymous said...

Love you. Big hugs and kisses to ALL of you. You're all in my prayers.

Becca said...

I can't imagine how frustrated and worried you must be! You are right, it is part of our being to nourish our children. I am so so sorry. Let me know if there is anything I can do.

S said...

Logically, I know we have done and are doing everything we can, but emotionally, it feels like I'm failing her at some basic level.

Yes. That's the crux of it, no?

I, too, am so sorry. And I wish I could do something besides listen/support. Though that's something, it feels pretty paltry in the face of this situation.


crazymumma said...

I totally understand you not wanting people to write about how to fix it.

I would be going apeshit. The food thing, it is so fundamental to our nurturing.

Anonymous said...

It makes so much sense, what you say. That disconnect between the logic and emotions. How incredibly frustrating and exhausting it must be.

For what little it's worth, I wanted to let you know how right your decision sounds to me, to stop trying to get her to eat. KayTar is so lucky to have you as a mother.

Suz said...

Absolutely no suggestions. My sister has been going through something similar with her 2.5 year old daughter and has made a similar decision. Her heart is breaking; she's fearful and conflicted. My thoughts are with you as they are with her.

Don Mills Diva said...

No suggestions Kyla - just support and admiration.

Aliki2006 said...

Just support and hugs from me, too.

And...if it makes you feel better (dry laugh here mixed with tears) she's getting more calories than my 7 year old son.

Sigh. Hang in there, friend.

flutter said...

((you)) ((kaytar)) ((josh)) ((bubtar))


ewe are here said...

I'm so sorry, you must be a nervous wreck over this.

Sending you good thoughts and a big cyber hug.

Family Adventure said...

I'm sorry, Kyla. I wish you had better news to report. I hope you will, soon.


Kristin said...

I'm sorry, Kyla.

Even if I had a suggestion I would keep my mouth shut. But I have no freaking clue anyway.

You're doing great, though..."not caring" like you are and all ;)

Anonymous said...

no answers/suggestions. just a big hug. willow still only eats honey sandwiches and drinks milk. she is now five. i've basically given up trying to change/alter/improve her diet. nothing works. i've been told that she will grow out of it by the time she is 12 or so. i'm no longer so sure. however, she does have an appetite and for that i am grateful. she'll starve herself the appropriate food isn't available, but if i make honey sandwiches she'll eat several at sitting. the appetite thing is recent... i hope it changes for you too.


Julie said...

I'm so sorry this is so rough for you. I'm wishing and praying with all my might that you get through this phase soon. I don't have answers and I don't know where they will come from, but I know they will come and you will get through it. Hugs.

Mimi said...

This is really eloquent, Kyla -- I am really struck by the comparison between the hearing loss and the no-appetite: you're so right that both are medical problems and absolutely right that they FEEL different. Of course they do! And of course the problem is making your brain and your heart work together on this. I'm amazed at how, in the midst of this heartbreaking and frustrating crisis how you are able to step back and think through your own reactions. My god, you're strong.

But it's so perfectly natural that your heart rebels against all this, no matter what your brain says or 'knows'. It's okay to feel terrible -- I'm sorry. If I could give you a big hug and let you rant and cry on my couch, I totally would.

dawn224 said...

I'm really proud of you for saying what you need - :) thanks

Katie said...

My child died because he could not eat, so believe me when I say my brain and heart understand the torment you are going through right now. The food issue (be it liquid or solid) was something I could not fix for my child, no matter how hard I tried. No matter what therapies we went to, what diets we tried, hell, not even surgeries could save him.

With Kaytar it is her will, with Jakie it was his body.

It is all unfair, but it is purposeful, remember that.

I am here for you, to listen to the anger, the confusion, the outright pouting of life's unfairness.

Love you.

InTheFastLane said...

I can very much understand where you are coming from. Moms are made to feed. All I can do is send hugs and maybe a stiff drink or two.

~aj~ said...

I think all of your anxiety is 100% warranted. I hate this for you guys...just hate it. KayTar is in my prayers right now. I hope this gets better soon. ((HUGS)) to you, sweetie!

amanda said...

thinking of you....

moplans said...

you're right. The feeding thing just feels different from other issues.
I try not to think about it really.
hugs kyla.
Perhaps we can start up a Pediasure support group ?

Kim said...

I am just so sorry....and wish there was something all of us could do to help. You are an amazing mom and do such a fantastic job with Kaytar--every child deserves parents like you and Josh to advocate for them.
(Hugs and more hugs)

carrie said...

Oh Kyla - I'm just here, saying that I wish you guys didn't have to go through this.

Anonymous said...

I'm sick and weepy, but this post would have brought the tears to the surface regardless. It's incredibly emotionally taxing and you've already so much to bear. You guys are always in my prayers, but especially so now.

Beck said...

Feeding our kids is SO central to who we are as mothers that OF COURSE this feels like something that you should be able to fix.
Praying for you guys.