Just an Update

This is a directionless post...consider yourself informed.  Life is still wonderful.  Even when upset occurs, this is still such a very good life I'm living.  I feel so lucky, and I think Ruby does too.  Nearly everyday she announces, "This is a beautiful day! Isn't that right, Mama?"  Rain, cold, wind, fog...nothing can disturb her view of the world.  Isn't that delightful?  I'm so grateful to live in peace with my daughter.  So proud that her world is simple and beautiful, that even when things stink we find a way to see through it and be happy.  

Ruby is just a peach these days.  Being four completely agrees with her...and me.  She is still entirely contrary at times.  Still fierce and stubborn.  This is good thing, it is who she is and so could never be bad.  She challenges me to be a better parent; a better person.  Having a child, and being present with them every moment of the day, forces you to examine yourself.  It forces you to empathize in ways you'd never needed to before.  It demands every bit of your skill, your love, your diplomacy, your kindness, and your patience.  

So yes, Ruby is still brimming with sass...but she is also so kind.  So loving.  So concerned with others and remorseful when she feels she's hurt someone.  Most delightfully she also seems to have realized that adults can be boring.  For weeks now she's been actively seeking out peer interaction.  She ADORES her cousins.  To outsiders who are unfamiliar with Ruby and her plethora of anxieties it might appear as though she is overly sensitive when she is with them, or with any other children for that matter.  And perhaps she is, but she has come so far.  She begs to see Ronie and Kai, constantly...like every hour of every day constantly.  Luckily they are only a flight of stairs away.  And not only this but her fear of being touched by them has vastly diminished.  She still wants control of the situation, but is willing to let go more and more.  She trusts them more, and recuperates from upsets much quicker than before.  She chases them around our basement, and even snuggles with them in bed.  She willingly kisses and hugs them!!  To the parent of an average child this probably seems standard, but to our family...it is nothing short of miraculous.  I nearly cry every time she reaches out for Ronan, or when she doesn't recoil at Kai's touch.  Basically this is all a very very BIG deal ;)

I guess that's all for now.  Sorry for my abruptness, but I'm tired and happy and ready for bed.  So off I go.  Good night friends.

Funny Bunnies

Ruby with her string cheese :)

Life is Good

The past four years have felt like a raging river.  I've been grasping on, struggling to keep upright in a tight raft not meant to traverse tumbling waters.  Up and down, over boulders and falls large enough to capsize my vessel.  And now I've come to this eery calm.  The stream has somehow flowed into a glass lake just when I felt myself slipping beneath the surface.  The water began to consume me and then...nothing.  Serenity and peace.  The quiet I had always sought became attainable.  And here I am.

Life is so good right now it scares me.  During the past four years I've faced what could only be described as a bizarre amount of challenges.  First I was gifted a child whose needs surpassed what I felt I could give.  Not only her development but very existence seemed all too tenuous.  And then my marriage...now thankfully gone...fell victim to a series of problems which shall remain unnamed.  In the wake of these troubles I find a foreign state of being.  What I can only assume is happiness.

Ruby is four years old.  She is so smart it kills me.  She is brave and strong.  She is passionate and loving.  She thrives in school.  She is healthy for now.  She is miraculous.  And I have become such a good mother.  I don't say that to sound vain but when you find the thing you were put on this earth to do you know it.  And I know it.  I may not know much else but I KNOW I was meant to mother to my child.  And frankly I rock at it.  Maybe not 100% of the time but I'd venture only slightly less.  I am a good mom.  This is not the life I would have designed for my daughter but it is oddly enough the best one she could have.  What's that phrase? It's only through the darkness that you can see the stars? For my little family, how true.

And so what else can I really say? For a brief moment on this journey the water is placid.  Its smooth surface a much appreciated reprieve.  The rapids may come again, most certainly will come again, but for now all is well.  And so I will relish in the peace.  Secure my vessel for whatever comes ahead and for this small moment enjoy the beauty that surrounds me.

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!

The Talk

As nearly all of you know, Ruby has a over abundance of terms to describe her medical conditions. Velo-Cardio-Facial-Syndrome or VCFS, 22q11.2 Deletion Syndrome, and occasionally (however inaccurately) DiGeorge Syndrome are used to describe her genetic condition. In addition to this Ruby's heart defect can be described through a myriad of labels that mean very little outside of the CHD community. Tetrology of Fallot (ToF), Pulmonary Atresia, major aortopulmonary collateral arteries (MAPCAs), and a Ventricular Septal Defect (VSD) are the specific medical defects of her heart.

So...rewind a little over 3 years. These terms were all defining. I mean, they weren't in the sense that Ruby was, and is, my beautifully unique baby above all else, but still...they were all I had to go on as far as what to expect. So I treasured them. I became obsessed with them, like most parents of children with exceptional needs do in the beginning. I couldn't foresee the kind of child Ruby would become so I depended on these terms to give me the insight I so desperately needed. I would prattle them off to anyone who looked sideways at my child. Mostly because I was so proud of all she was in spite of these labels. They were so present in my mind. Always sitting forefront, ready to spring into action whenever I needed them. I was adamant about their proper usage and felt it my duty to spread awareness to every stranger I met.

But as time passed they became less important. I began to barely think of these terms in regards to Ruby. At medical appointments I occasionally struggled to recall some of the specifics, not necessarily about these phrases, but about her g-tube size, the date of her last surgery, the name of her old feeding pump, etc. I simply didn't recall the details. Ruby grew and became so much more than these labels. She became so many wonderful and crazy and normal things that my poor brain just didn't have room for all of these obsolete medical facts when it thought of her. She was just Ruby and all of the terms didn't seem to matter that much anymore.

Whether that lapse of attention to her terminology was good or bad I have no clue...it's just what happened. But now...now she is much older. With her age comes her big growing brain and all of its questions. Perhaps not exactly questions, but certainly a more sophisticated ability to understand who she is and what makes her unique. Now I have never been a person to shy away from open and honest explanations of all things biological with children. For example, Ruby knows where babies come from (at least an age appropriate version). She knows what makes males different from females, and so on. In fact she loves all things scientific and anatomy is no exception. We have books on the body and so forth and she thinks it's just awesome. She loves to explain to me how her food goes, "In my mouth, I chew it. It goes down my phosegus [esophagus that is] and to my belly!" So she is certainly able to grasp basic concepts.

Anyway, this means that I feel the need to explain, and very often over-explain, her heart condition to her. Sometimes these discussions are prompted by her noticing her scars, or her g-tube. And for whatever reason I've found that bit of the medical mumbo-jumbo easy enough to explain to her, even with my momentary lapse of attention to her plethora of labels. Obviously I don't get into the specifics of what MAPCAs are and whatnot, but she kind of gets it. And I suppose her heart condition has always been mentioned to her over the years, in spite of it not being a central issue, because she does see a cardiologist. Likewise she sees a GI doctor and her "tubie" gets plenty of attention so we've talked about why she has it. But...that whole VCFS discussion...I guess I kind of forgot about it.

It's not really an issue in her life. It's not like she sees a VCFS doc, or even goes to genetics because I learned really quickly how useless those appointments are. And it's not like she has a scar from her "VCFS surgery." She doesn't get purple fingers from it, or tire easily from it. She doesn't get bolus feedings from it, or get it snagged on her shirts...so it's not exactly a tangible thing to a 3 year old. And I suppose because of those reasons, I hadn't really mentioned it to her. In fact, I probably would have gone another year or two before having a talk with her about it, merely because it hadn't occurred to me.

That is until few weeks ago. Because around that time she found a pamphlet in an old diaper bag with VCFS printed on it with giant letters. Smart and nosy girl that she is, she shoved it in my face and asked me what it was.

Without really looking at it I said, "Uh...a pamphlet."

"What does it say?"

I finally looked at what she was holding and replied, "Oh. It's about VCFS."

"What's CVSS"

And then it hit me that she had no idea what VCFS was! I had completely dropped the ball! I never got how parents whine about having "the talk" with their kids until then. Sex? No big deal. Reproductive organs? I got this. Even heart defects? Sure, bring it on. None of these topics were even an issue because she has known about them forever. We never had to have "the talk" and hopefully never will because I think it's best to gradually mention all this stuff in increasingly appropriate language as a child grows. But I had totally forgot about the fact that I probably should have mentioned to my child that she has a genetic condition. I can't believe it never occurred to me!

So I basically fumbled the whole conversation since I was taken by surprise. I'm pretty sure she can't understand what chromosomes are, but in my state I sure blathered on about them.

"Uh, well you see, we all have chromosomes...uh...and we have a whole bunch of them...in fact we have pairs of them...you get one set from me and one set from your dad...uh...and they help to determine certain things about us...like...what color our hair is...and..."

As you can probably guess she stared at me with a vacant expression. She then flapped the brochure around in the air and said, "look it's like a bird!"

But of course I felt crappy for never having mentioned the phrase VCFS to her before, so I pushed on in a slightly more coherent manner.

Eventually I simplified things for her. I said something like, "You have VCFS. It's why you have a heart condition, and why you see so many doctors. It might be why you sometimes have a hard time around other kids. It might mean you learn differently from other people. There are tons of other people who have it, some people have it and they don't even know. Even I could have it."

Worried that I'd been too negative, which I certainly didn't mean to be, I amended, "It's not a bad thing. It just means you are that much smarter and stronger than everyone else because you are so amazing even with a tiny piece of your DNA out of the picture!"

She listened as well as any pre-schooler might, said, "Ok," and went back to making the pamphlet fly like a bird. But she must have processed some of what I said because when she found the brochure again the other day she declared proudly, "I have CVSS!"

So, did I totally suck at this!? I mean, I'm sure it's not that big of a deal because she is only 3, but I feel like I could've handled this better. Maybe I should be happy I fumbled with this now, so that I can have a better idea of how to broach the topic with her as she grows. I just feel like there is a lot riding on how she views herself, based on how I frame VCFS to her. Am I crazy? Is it not that big of a deal? I really don't know... I would hate to think that she thinks any less of herself because I screwed up a conversation about biology. I mean, VCFS isn't "bad." I guess the issue I'm struggling with is how to define it. Do I describe it as a disease? Because it's not. And that makes it seem so "bad." I want to explain to her that in some ways it's no different from a person who is genetically predisposed to diabetes, or having long toes, or sinus infections, or for having a giant genius brain that can do complex mathematics in 0.2 seconds. It is a part of who she is, and because of that could never be "bad." I just hope I will be able to help her see that someday. That she will view VCFS as a component of who she is, without being defined by it.

Change

Children change everything and nothing. In many ways I am the same person I was 5 years ago. My neuroses has sadly not left my side, nor my occasional lapses of self-doubt. I still adore Mexican food and watching old movies. I am still surrounded by the same circle of close friends. Life continues to forge a path that rises and falls. Minutes turn to hours, hours into days, days into months. I have the same feelings. I value the same things.

And yet...I am reborn. Having a child forced me to examine things in my life that I had merely glanced over with a blind eye. My life was not good before. I was a broken person and completely unwilling to recognize that.

Ruby didn't 'heal' me. But being responsible for her did. I could no longer live in the environment I had, at the very least, allowed to take root. Perhaps I didn't plant the seed, but I never weeded the damn garden. That probably doesn't make sense... Sorry about that, all you get are bad metaphors. My point is that I had been a passive spectator in my cluster**** of a life until Ruby came along. Once I had her I ceased to care about the false sense of security I had convinced myself to accept. That meant nothing. My own comfort, the comfort of people I had been wrongly protecting for far too long...it was all pointless. The only thing that mattered was, and is, Ruby. This perfect little being's life was in my hands, and I could no longer rationalize away the dysfunction in my life. Because it was up to me to create a home and a family that was worthy of her, and if doing that meant rocking my fragile universe, then that's exactly what I was going to do.

And so, I did it. I changed my life. I am a better person for it. And most certainly a healthier person for it. It has been hard, it will still be hard. But she has gotten what she deserves. She has a loving and stable home, and you know what? So do I.

Guilt

Guilt. All encompassing guilt. When it runs unchecked it overrides all of the senses. It often renders me immobile. Frozen under its oppressive weight. As a woman, and specifically as a mother, it is constant. I hope by making this generalization I don't offend. It has merely been my observation that guilt is ever-present in the lives of the women that I know. Whereas men seem more content to accept what is and not worry about what they could have done to alter their reality...women seem plagued by their choices. Perhaps because women feel responsible for Every. Little. Thing. I know I do...even when that is completely irrational. I feel as though I should be able to provide stability/happiness/compassion to everyone at all times. And frankly...it is exhausting.

I should have done the laundry today, why didn't I just do it? Now Ruby will be living in squalor. I yelled at her yesterday when she was screaming in my face. Why did I do that? Now she will be scarred for life. She cried on Thursday on her way to class. I couldn't do anything to help her. Her confidence will dwindle and she will feel helpless and alone. I must be a horrible mother. I couldn't get her to eat enough this morning...and we didn't eat at the table. "Real" families eat at the table, right? Why am I failing her at every turn? Why have I made the choices I have? Will she resent me? Will she need a therapist to sort out the issues her parents have burdened her with? When she faces her next surgery will I be the mother and the advocate she needs?

See?! I'm already feeling guilty for what I might or might not do in the future! Crazy! Oh how the mind works, eh? I once told my friend that everything we are responsible for causes us to feel guilt. She laughed and agreed.

Before I became a mother, I was a worry-er. I would over-analyze and fret over the smallest of things. Thinking I had not done enough to help, or afraid I had not studied hard enough for a test. I frequently felt that my best was never enough, and guilt ensued. AFTER I became a mother those feelings grew like weeds. Strangling out the semblance of a garden that was my mind. Now, there are days when every other thought is centered around what I perceive as my failings.

When you have a child, your emotions are suddenly not your own. It is a startling effect, to feel so connected to another human being that when they hurt you feel it too...actual empathy. Real and true. When Ruby cries I feel torn inside. I feel a pull to comfort her that can not be expressed fully with words. When she is upset, or frightened I feel it with her, through her. Those early days in the hospital were particularly harrowing. After being stabbed with needles for an entire afternoon she would flinch at a gentle touch. I felt like I was pierced as well, my skin broken as hers

So...when you feel that much for someone, and when you are responsible for their life. Their health, their happiness, their education, their diet, their social abilities, their everything...that leaves a wide net for you to maintain. Every time you fail a hole in that net tears. And while you try to repair the damage you've done there...another 5 holes appear. Some of these rips are your own doing, and some are caused by snags in the sea but either way, some days it feels like all you are doing is patching holes. Being responsible for life is amazing, and rewarding, and joyful, and triumphant, but as I said before...it is also damned exhausting.

So deep void...what to do about this guilt? How can a person overcome it? How can I know I've really done the best I could have done for my child? Hello void? Any answers? Cause I'm fresh out of ideas...