Thanks

There are people in this world who we catch on.  Snag an arm, a leg, a vail of fabric, as we wisp past in our trenches.  And sometimes they stick.  This is for all of the people who have stuck in my life.

My strength of character is not an innate essence.  My strength is pulled from you all.  Sucked up through the web of vessels that connect us.  Drawn from you and passing to you.  This is why I can do anything.  Survive anything.  And thrive through it all.  I am able to breathe because I have your arms to collapse in at the end of the day.  I am sappy and overjoyed and powerful because of you.

It is you who have given my daughter the best version of me.  I have waded in some things that seem so incredibly heavy, so darkly solitary that it would have been the easiest gift to float away in the hot tar of black and never return to myself.  But I could not.  You wouldn't let me.  Deeply you scraped into the pit and ripped me into the world of living.  Forcing me to move and think and feel. Throughout it I have been safe and protected.  Shielded from judgment and cruelty by the armor you have forged.  Safe and wanted, and so incredibly fulfilled.  

And so, to my personal army, I love you.  I thank you from whatever piece in me speaks most truth. You are valuable and honored forever in my heart.  Much love.

Ruby Tubie

Please bear with me for the next entry...I have a ton to say and I doubt in my excitable state it will be very coherent. Expect lots of these "..." and maybe some of these "--". Superfluous punctuation seems to occur more often when I am passionate. On to the post...

Don't ask me how, but I discovered this video on YouTube tonight.
http://www.youtube.com/watch?v=NelpARXhoZY&feature=youtube_gdata_player

Ok, it 'might' have been discovered after surfing the internet for a good 3 hours while Ruby is with her dad tonight...or ya know something else that makes me seem less pathetic. It's from a British reality program I think. Anyway, *TUBE FEEDING PARENT ALERT* if your child has a tubie WATCH IT! Trust me you will find it fascinating...or infuriating...either way it's worth seeing. It's 45 minutes long so I know friends of mine minus tubie children won't have time to watch it so I will summarize:

A young girl (7 or 8 years old I think) is exclusively fed with a G/J tube, a tube you probably don't recall that Ruby used until she was over a year old. It goes directly into the intestine and requires a feeding pump (no gravity bolus) because the intestine can't expand like a stomach. Anywho...this girl has esophageal atresia I believe, and although anatomically is able to swallow/ingest food after numerous surgeries, has an obvious and crazy severe oral aversion and eats nothing. And I do mean nothing. No liquid. No solid foods. Absolutely nothing. Clearly her mom is awesome and devoted and loving. The girl seems happy and oblivious to the fact that she is missing out on anything. But mom is worried that her baby will never lead a normal life; never know the awesomeness that comes from pigging out on pizza or ice cream, etc.

Trying to keep this short we'll skip to mom finding a clinic in Austria that specializes in getting tubie kiddos to conquer oral aversions and eat eat eat. They succeed. Apparently 100% of the time. Mom is clearly relieved to have any possible way of getting her kidlet to eat and after getting an acceptance letter they fly to the clinic to begin the 3 week "treatment."

Now at this point you might be thinking, "Yay! Happiness and joy! Kid will learn to eat! Normal normal normal, yay!" But oh no! This is a starvation clinic! Yay?! Absolutely not "yay". Instead its all, creepy gaunt children and psychological stress. Belittling the mom-child bond. Suffering and manipulation. Eww eww eww!!!!!

Were you to observe me watching this show of a happy healthy special needs grade schooler morphing into an exhausted, starved, and traumatized ghost, you just might have witnessed me throwing up my hands and shouting in disgust at the doctors...maybe even flipping them off while wearing a really menacing scowl. I'm probably exaggerating what I saw due to my own very personal feelings on this matter, but it was crappy. I felt awful for the mama who clearly loved the stuffing out of her baby, and super awful for the kiddo undergoing the treatment.

Ok...so that sort of summarizes it...oh I forgot! Duh, you probably want the conclusion! The little lady did end up learning how to drink over the 3 week program, and is starting to taste solid foods as well. Obviously this is wonderful progress, and I'm not going to sit here and try to dispute that. Nor will I try to say the program didn't work, because it did. It got her to eat...but my God at what cost!?

So here's where I want to get into the meat of this post...that's right all that was merely context...sorry! Here's my 2 cents on the whole weening kids off of the tubie dilemma. And I will only speak to my experiences with Ruby because that's all I have to go on. If you've had totally different experiences and are reading this and thinking, "What is h*** is this lady talking about?" Well then I apologize, but we are all pretty trapped in our own brains so there you have it.

Right...me and Rubes. Every 3-6 months Ruby, me Ma, and I go to Ruby's truly amazing GI doc to "check on her progress." I really do love her doctor...we went through a passel of GI docs to find him and he is the best there is. Still...he's a doctor...and doctors are always "the ends justify the means" kind of people. They have to be. I get that. They see a problem, they want to fix it. Mamas, on the other hand (and in Ruby's case Grannys, Aunties, and Granddads) are constantly doing this balancing act of making sure their kiddo is happy and healthy. Note the word 'happy.' Happiness is a HUGE factor for us.

Here is a rough list of my priority concerns regarding Ruby:
1) How can I keep her alive with minimal discomfort and pain
2) How can I keep her psychologically happy and stable
3) How can I help her to become a good person
4) How can I help her to develop social relationships
5) How can I help her to grow and learn to the best of her abilities

See!? The fact that she is on a feeding tube does not fit into ANY of those concerns! I honestly don't care that much that she has a G-Tube. I KNOW she doesn't care. Sure it'd be great if she didn't need it...one less hassle I guess. And I'm not trying to imply that Ruby's situation is identical to the girl's in the video, because it isn't...I don't know her whole story. And it's true that Ruby, in many ways, has a far less severe oral aversion at this point than the young lady did at the start of the show. Ruby is eating a great deal of food these days, she will barely touch liquids, but I see progress continually. She is getting the majority of her calories from the food she eats, which is a true miracle in many ways.

But seriously!? To starve a child and try and severe the mama-child bond or whatever...excuse me but that's total bullshit. All this isn't to say that Ruby and I don't work damn hard to overcome her oral aversion everyday. We spend a MINIMUM of 5 hours a day working on feeding...to be honest it is ridiculously time consuming and on both our parts sometimes incredibly frustrating. But we do it...I make sure we devote time to feeding therapy because of course it would be lovely if she was completely self-sustained, but that's as far as I'm willing to take it. Her mental health and her trust in me is paramount, and I would never be ok with her suffering just to get a tiny piece of plastic removed.

I think the reason this all hits so close to home, is that in the last year or so I've had increasing pressure from the GI team to enlist Ruby in the hospital's feeding team program. From other parents stories it seems like a toned down version of this Austrian program. It seems as though force feeding may also occur. And frankly I'm sick of hearing about it. Ruby is a person that has intense control issues. She feels threatened when people tickle her without permission, or when someone touches her arm without her being prepped. And she has overcome so many of these aversions due to patience, kindness, and support. I am not about to throw her to the wolves simply to get some 'results.'

I say screw those results. I'll take a happy, and still perfectly healthy, child who trusts me explicitly over one who is tube-free any day of the week. In this case, the ends don't justify the means...sorry docs but this mama tiger is going with her gut over your expertise.

Seriously...does this look like a child whose life is lacking in any way? I think not!