I recently posted about Eliza's ongoing, and worsening, eating issues and how basically after almost 9 years of dealing with this I not only feel like the last man standing at the OK Corral, but that it is really a losing battle to ever get good nutrition into Eliza. You know, by eating, the old fashioned way, like 99.99% of the world does, enjoying a meal, maybe trying something new, or even just sticking to a handful of standby foods, which still afford your body what it needs.
Eliza has lately begun to talk a lot about her two new favorite dragons. "Unknown" and the "Night Light Dragon."
Tonight at dinner at her favorite restaurant (yes she has one, it makes awesome Shirley Temples and they refill my wine without having to be asked) she drew the dragons below in her sketch book.
Keeping in mind that pen and ink is not Eliza's best medium, the first dragon below has a long tail, big eyes and a night light (a star, just like Eliza's night light) at the top of what looks to be a long tube.
And it has the words: "Food Goes Here!"
This drawing depicts the dragon named "Unknown."
Unknown has the ability to generate his own food by the combination of water and love (depicted by a bottle of water and a heart). Like the Night Light Dragon, Unknown does not have to eat.
Both the Night Light Dragon and Unknown can eat, if they want to, if it is something they enjoy. But they don't have to eat for nutrition or any of the myriad of things that they cannot tolerate.
I don't know if I am more fascinated by Eliza's creations or scared by them. For her whole life I have managed to avoid having her use a G-Tube. From giving her a bottle every two hours for years, to spending your average American's retirement fund on every kind of therapy known to man and woman (mostly woman since I have yet to run into a male feeding therapist).
But what if this is what she wants? She certainly knows what a G-Tube is and looks like.
When I asked her about the Night Light Dragon and Unknown she said they were very lucky because they were born with their tubes and didn't need an operation to get them.
This whole thing reminds me of two books I read in elementary school, "Karen" and "With Love From Karen" by Marie Killilea. Karen had either cerebral palsy or polio (I can't recall which). She and her family struggled for what seemed like years to teach her to walk. She was eventually able to walk with crutches rather than use a wheel chair. My main recollection of the books was when Karen decided that she would rather use a wheel chair since she could see the world with her head held up, rather than always looking down when she used her crutches. I recall that her family saw this as giving up, but that Karen saw this as freeing herself from the difficulties of walking with crutches, never having her hands free and always looking at the ground, not the sky.
The story of Karen really resonates with me, because it seems to me that Eliza is reaching an age where she is starting to want to decide how she wants to live and what she can tolerate and what she can't tolerate.
We are a society obsessed by food, good and bad, healthy and pure crap. Having a G-Tube and taking no joy in food, save for Haagen Daz ice cream, popcorn and a few other treats is not considered "normal" in our culture and never will be (and certainly is not a diet that can sustain a person).
Maybe normal though is overrated?
Fascinating pictures. Maybe she's as tired of stressing about food as you are.
ReplyDeleteI think you may be right Amy.
ReplyDeleteI gave into the g-tube at 9 months. She's now 4.5 years and still on it. It has taken us this entire time to get her to consume anything. She was 100 percent g-tube fed up until 9 weeks ago. Now she's about 75 percent tube-fed. We are making progress. On the days when she doesn't want to eat at all we do 100 percent tube. I feel like once I stopped my worrying about her intake and if she would ever eat, and started following Her lead, things are starting to happen. The tube has saved her life literally. She was born at a pound and since getting her tube, we can focus on other aspects of her life, and just let the eating come when it comes. Admittedly, she was drinking 6-17 ounces a day at 9 months and she went down to drinking nothing once we placed the tube, but if she had been older I believe she would have been able to continue eating. I love the tube. I hate the tube. One thing for certain is that I don't have to worry about her getting nutrients and enough calories. And her desire for food is starting to grow little by little, organically, from a place that is all her choosing. Her weekly therapies haven't ever helped. If you ever need to talk, I'm here. You can write me at my public blog and I can let you read my private blog (which I don't write anymore). Hang in there. You will always know what's best for her.
ReplyDeleteThanks for sharing your story Noelle. I'm glad your daughter is making progress! Eliza was also born extremely early, 575 grams and had a difficult NICU stay. For the first 2, almost 3 years, I fed her every 2 hours since she would only take am ounce or two at each feeding. She was on a liquids diet until about 4 when she started to eat some foods. Some Over the years, food she previously ate will now make her gag or she simply refuses. at any given time her choice of foods has been limited to three or four acceptable foods. None of which have ever been a fruit or vegetable. Eliza is almost 9 so introducing a tube at this point is somewhat troublesome. She has severe anxiety about anything relating to blood, surgery, etc. so that's another hurdles to jump. So it's a very tough call at this age.
ReplyDeleteAnne,
ReplyDeleteThat is such a tough call to make. Feeding is a mystery to me. It's like a puzzle that I am never able to solve. It would be very difficult to introduce a tube at 9 and I don't even know if any doctor would agree to it. I'm so sorry. You are doing the best that you can and you've kept her off a tube, which is amazing!!! Keep plugging along and doing your best and you'll know your answers in time. That's what I tell myself.
I loved the Karen stories, so many lessons from so long ago.....yes, i think your daughter is getting to the point where she is exploring this idea seriously. Maybe time for a meeting with the relevant doc to at first talk just about the tube option with her..she's growing up.
ReplyDeleteHi,
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Normal is highly overrated... that's such a tough call. Maybe you're right to see what it is your daughter wants. Eating when you don't want to is HARD. Feeling like you're giving up (even if you aren't) is hard. Keep thinking about it. Or maybe you've already made a decision. Wishing you peace!
ReplyDeleteWith a tube insurance may pay for the formula, at least after you talk to them on the phone for several hours every few months. She could also still drink the formula when not "too bored" (my kid, not yours) or whatever.
ReplyDeletePlus you could go the all organic, all wholesome stuff way with a high-end blender. You can sometimes get a nice discount on the blender if it is for tube feedings too.
Not telling you what to do and you probably know all this already.