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...

My Hero

I finally feel ready to write again. This blog is pretty much exclusive to family and friends. It would have been so much easier to write this past year if I knew those closest to me wouldn't be reading it. Anonymity goes a long way some times, ya know? But since that isn't the case with this site I held off. Biding my time until I felt able to share my thoughts and feelings about raising Ruby without unwittingly letting go of certain details that should not be expressed to the masses. Undoubtedly I will be walking this line with a slight waver in my step, but I do feel more practiced in my ability to balance as of late so...here goes!

Ruby is...well for starters Ruby is three!! Can you believe it!? I know I barely can. She is becoming the most ridiculously bossy little fiend. And she is so funny! I have never known another pre-schooler with such intentional comedic timing. The kid is a riot and she knows it. She loves toy cars, rocks and fossils, cars, reading books with me, cars, Finding Nemo, and oh yes...cars! Seriously, the kid may be an addict. In truth though I can't believe how absolutely deliriously happy she makes me everyday...even on the really crappy days. Even those days where I can barely function, and can't seem to escape the curious gravitational pull my couch has. Even on those days when she's acting particularly fiendish, and can't seem to stop screaming or whining. Maybe that seems paradoxical, just like every other facet of parenting, but it certainly is true.

This year has brought on intense challenges for Ruby. Very profound changes have rocked her little world. Most of which, quite frankly, make my gut wrench. But she is still standing, still precocious, still very much loved. And then there are the smaller battles. The ones that passerby can't detect. She faces fear everyday and overcomes it. She is terrified of loud noise, of the unpredictability of other children, of being separated from me (even for brief periods of time), and of a variety of other worries that fall under the blanket of anxiety. Whether these issues are a result of her chromosome deletion, our family's seemingly genetic predisposition to anxiety problems, her painful experiences in the hospital, or simply her innate personality I couldn't tell you. What I do know is that she struggles everyday to function in a world perceived by her to be full of chaos. I've borne witness to her panic and frustration many times.

But I have also seen her triumph. Oh how far she has come! This small person; so sensitive to movement and sound and touch...she now thinks nothing of striking up a conversation with a new adult as long as I'm within arms reach. She runs around my friends' houses as if she owns them. She embraces dogs ten times her size. She goes to the movies and doesn't cry at their volume. Heck, she goes to school...WILLINGLY...with a classroom full of CHILDREN and no Mama!! She is my hero. This little person who once found all of those things so paralyzing at one point now does them with only minor reserve. I think she must be the bravest person on the earth. Can you imagine living in a world filled with things that frighten and frustrate you? Where nearly everything seems a threat? Some days I think that's how Ruby must feel...but she is stronger than those fears. She is just so strong. Just think, all of those strangers, who've been lucky enough to have a chat with Ruby, have spoken to an actual hero...and they don't even know it! Not to mention Ruby's whole surviving-a-life-threatening-heart-condition shtick! She is amazing!

So maybe that all sounds incredibly sappy and false. I'm not sure. Don't get me wrong, Rubes has her fair share of sass...okay she has three scoops of sass with a side of stubbornness, and extra opposition on top. Sometimes she couldn't share with her cousins if her life depended on it! And occasionally she is a complete wild child, who screams when we are out to eat or throws EVERYTHING practically EVERYWHERE in a comical act of defiance. But all of that? That's just being three. I can handle that...even when I feel like I can't. Because as you might have deduced, I have a hero for a daughter.

My Tough Girl

Bad Day

Today I had a bad day. Don't get me wrong I've had a lot worse, but today was hard. I'm a bit of an emotional wreck as of late and find myself acting like a crazy person at completely inopportune times. I don't really want to elaborate on this but trust me...today contained one of those moments.

Perhaps it's because I'm sick, a sinus infection appears to have me in it's grips...yet again. And so my brain has been rather fuzzy. I can't seem to compartmentalize emotions as well as usual. Sadness sometimes spilling into my motherly duties when I least expect it. So frustrating to not be in control of one's faculties. But like I said, I am sick...so perhaps it's best to chalk it up to clogged sinuses.

I'm not so sure how much of this is making sense--in no small amount due to the afore-mentioned fuzziness. I'm also typing this on my phone, which makes for impulsive and disjointed thoughts. Probably small paragraphs too...or not...so hard to tell on a phone.

But I digress! Bad day...yes I have had a bad day. I feel quite horrible. The tv did a lot of babysitting I'm ashamed to say, because for much of the day I was planted on the couch contemplating just how much sinus pressure my frontal and temporal facial plates could actually take before fracturing (apparently something from h.s. anatomy has stuck). At least with each groan of pain I found myself promptly greeted with sloppy toddler kisses in a vain, albeit appreciated, attempt to kiss away the owies.

In addition I am doomed to witness the entropy of my home as I sit suctioned to the couch cushion. The house seems to have turned from it's relatively clean state to a complete disaster...all because I haven't been on top of my game for...what? Two days? Yes...I guess two days is all it takes for a change of state to occur in domestic matter.

But...tomorrow is a new day...or whatever cliche fits best. I have antibiotics, antihistamines, and nasal spray, and so armed I will face the dawn. Tonight I will cuddle my squirming child, who really should be sleeping and not swatting at my phone, and think about what delightful mischief we can get into tomorrow. As long as my poor sinuses grant us permission, of course...

Saying Goodbye to the Green-Eyed Monster

Jealousy. Oh how I HATE jealousy. It has been an emotion I have had to deal with since the day we found out Ruby was never going to have a "normal" life. I remember feeling jealous of my friends with healthy children; jealous of other families in the NICU with children who were "better off" than Ruby; jealous of my sister and her healthy baby, jealous of something I would never have...or more to the point, something Ruby would never have. It's one of the most deplorable emotions to live with. Mainly because I know it to be an irrational sensation. It accomplishes nothing. It only serves to distance me from the relationships I need. And it clouds my mind to the pain others around me feel. It encourages selfishness--forces me to become a person I do not like at all.

One of my best friends was pregnant when I was. We went through it all together, and at that time I felt closer to her than I ever had before. And then the babies came. She had a beautiful healthy daughter and a month later I had Ruby and all Hell broke loose. For almost a year every time I saw her or her daughter I felt physical pain. A tightness in my chest. Anger, sadness, and so much jealousy. Every time after seeing them I would break down in tears. I hated feeling that way. I pushed her away because I simply couldn't stand the hatred I felt. And even now as I recall those emotions guilt unmistakably follows. I didn't want to feel that towards my friend, and especially not towards her sweet innocent baby...but I couldn't help it. Jealousy blinded me to her needs...and I became a pretty crappy friend because of it. All I could see was how easily things came for her daughter. Sitting up, walking, talking, Hell even eating was something Ruby couldn't do. I so desperately wanted those things for my daughter.

With every family I met, every old friend who posted pictures of their happy healthy children on facebook, it seemed that everywhere I turned I was slapped in the face with jealousy. When I spoke with other special needs parents they told me they experienced similar things, but that in time it faded. When the tumult of the early days dimmed into the background and emotions were less raw they ceased to feel that way. They said that once they began to see their children grow and develop, at whatever pace they could, that the feelings of jealousy were replaced with pride. I didn't think I would ever get there. At the time I knew I was proud of Ruby. Proud of her every breath; proud of each smile and laugh. But I couldn't imagine not feeling jealous of the life we had been denied. The life my child should have had.

I can't say exactly when it started changing. A shift in how I looked at my friend's daughter. All of a sudden she wasn't an enemy. She was an amazing and delightful resource. My child's friend. My child's best friend. (I'm crying now as I type.) All I see when I look at my friend's daughter is this amazingly bright and strong child who loves my daughter. Someone who accepts her differences with the ease that only a child can. I really can't even begin to describe how wonderful it is.

Even as my jealousy faded for my friend and her daughter I still struggled with it for others. But slowly that too began to dull. Ruby started doing all of these amazing things. Crawling, walking, and even talking a little...not to mention the wonderful personality she began to develop. And all of a sudden I stopped comparing. Stopped noticing what Ruby wasn't doing and started seeing what she could do. At each milestone I found myself beaming with pride! It didn't matter that she walked at 18 months versus 12. And it won't matter that she'll start talking in full sentences at 3 or 4. Or that she'll start to eat more regularly when she's 4 or 5. It just doesn't matter to me anymore! I know she'll get there and I don't really care when. Everything she accomplishes is just icing on the cake. She's my child and I love every single thing about her. I don't love that she will have to go through more pain as she faces medical intervention throughout her life but I love the person she is...and she is that person in part because of her "special needs."

It is so freeing to feel this way. The weight that has been lifted was so very heavy and I finally feel like I can enjoy everything Ruby has to offer. I feel pride whenever I see her struggle to do something other children already can. Because now where I once saw her suffering just to get by I see her determination and strength. And when I see other children who are clearly healthy or gifted I don't feel that pang of jealousy, I simply see children--and maybe potential playmates ;)

There is some quote that always flies around the internet...something along the lines of, "Being a good parent means loving your child for the person they are meant to be, and not for the person you want them to be." And although I always loved Ruby I think I finally truly FEEL that...that total acceptance and pride in whoever she is. And now that the veil of jealousy has been lifted it seems so easy! After all...Ruby is such a flipping amazing person exactly as she is!

Grateful

Time for another post on here. I haven't written one in a while...again...but I've just had a glass of wine and Ruby is sleeping so here goes!

The other day I was hit by the door of realization that I would assume is quite familiar to parents of children who are "medically fragile." Ruby had just woken from a nap and was characteristically cranky and cuddle-y. As she snuggled against my chest I stroked her head and sang to her as usual. But unlike our average post-nap cuddle I began to cry. My mind drifted to thinking about how she would not be with me, just like this, in nearly any other time period. Were she born 100, 50, or even 20 years ago she would have died. Or in a best case scenario, have been sustained on high levels of oxygen and in a much more delicate state. I couldn't help but imagine all of the amazing doctors, children, researchers, nurses, scientists, parents, animals, and so forth who have created a world in which my daughter can not only survive but thrive. Truly thrive! The countless variables that have played a role in her ability to live are mind-boggling. And because of all of those steps. Because of all of those pieces of the puzzle I am beyond the luckiest person that lived to have my child cranky and sweet nuzzling her face into my chest.

My life may be difficult at times. And Ruby's will undoubtedly be even more so...but all of that chemistry of universe will amount to something. Because she is here and with me. She laughs everyday. She smiles everyday. She reads with me everyday. She colors. She plays. She learns. She cries. She grows into an evermore admirable person everyday. All because of a hundred-thousand moments in time that led to her having a surgery that saved her life. And she gets to live it! I am simply in awe of this. And I will NEVER take it for granted.