So what the heck happened to this blog? Where did it go? Like old friends and favorite stories, Tan/Green is often on my mind – even if I don’t do anything about it. I started this blog as a way to fulfill my need to write. And because I had so much to say about living a “granola life in a fast food world.” And because I wanted to share stories and pictures of my children with friends and family. And because I have important lessons learned to share with my kids. None of that has changed.
Oh, the dangers of the worlds have moved into the mainstream media and I am thrilled that more and more people are thinking about the price of convenience. My babies aren’t babies at all and are getting too old and too aware of the world for me to indiscriminately share the details of their lives (excepting important information like how to detect Coats Disease and retinoblastoma through photographs!) I do still have many lessons learned to share with the boys – though they begin to require details of my and others’ lives be explained and examined which I cannot in good faith do in the blogosphere. I know, disappointing…
Certainly, the time I have to dedicate has changed. And my priorities underwent a shift – many, really. I have been stating things for years – about toxins in our environment, about first phases of motherhood, about lessons for my children. As if I have any authority or expertise. Sometime in the last few months – between work and home and blogging – I have become exhausted of stating things. How to do this or that. The why’s behind every “civilized” behavior or procedural decision. I have been a questioner for years – I like to think things over, research, try to understand deeply. And – in part through the Tan/Green Living Project – I found myself questioning more than ever, sure of less than ever and less confident about what I “know” than ever. And that is just fine. I still have a good head on my shoulders and state what I need to state…and question it all as much as practical.
Then something happened a few weeks ago.
This is a picture of our pet giraffe. Because, we have a pet giraffe, you know, as one does in the suburbs. I was out on a jog one Tuesday. Tuesday is trash day here. And this lonely giraffe was tucked up next to a garbage can and as I strode by I caught a glimpse and stopped, turning to make sure I was in fact seeing a giraffe. I thought, “oh, the boys would love that.” I tried it out for weight. Yep, I could manage this 20# concrete zoo animal for one block! And so I hauled her home and planted her out front. And thinking that randomly finding a giraffe out front might unnerve my sometimes wary kiddos, I better make a big deal about it. I told them as they dressed that we had a special visitor…a surprise! It was easier to get them dressed that morning than any day, ever.
We got ready then snuck around Daddy’s car to find…a giraffe! (Daddy who was with us and had no warning was wondering what in the heck I was up to!) Dante and Gabriel were delighted and after a little nudging they petted her. It was all great fun – Nathan mostly laughed at me for how exited I was at finding a giraffe.
Later than evening as I sat with the boys reading and talking I asked if we should name the giraffe since it seemed like she was staying. Dante calls everyone and everything a she right now – I often go with it. Now my boys have never wanted to get too creative in naming – the stuffed cat is Kitty, Gabriel’s stuffed dog is Bunny (and would have been Dog if it actually looked like one), cars are Big Car and Van…you get the idea. I decided to try anyway. I said, “Should we name the giraffe? What about Susie or Martha or Joy or…” I was cut off by Dante, “YES!! Joy! We should name her Joy.” I was so surprised. And he said this with complete and utter Joy. I felt true Joy at his excitement – that he stepped out if his box and imagined something beyond Giraffe. We have referred to her since as Joy.
Now, this may not seem like much of an event, it’s just that I am not one for whimsy. I just never have been. I felt so out of my box doing something so just for fun as bringing home a glass eyed, probably not weather proof, concrete zoo animal. And it…she…has since become a funny touchstone for me. Something about my severely limited time being dedicated to what brings me Joy. Something about digging deep for all the whimsy I can for these early childhood years when it really delights the boys. Something about shedding the perceived obligations (running 2 miles that morning) for recognizing and seizing the moments that will create a warmly remembered childhood (and marriage and work environment and youth group and…)
I have a lot going on in my life – like everyone. I enjoy my roles as Mother, Wife, Director, Friend, Family Member, Youth Group Leader, Runner, Pilates Student, Knitter, Blogger. When you push so much into so few hours though, sometimes you need more Joy and less dictating; more whimsy and fewer obligations. All of this to say that without meaning to I have taken a break from blogging. I am trying to find more Joy in the everyday. And I don’t know what that means for Tan/Green. I still love writing. I just don’t have the urgency to publish my thoughts the way I have before. Oh I would love to write up some of my adventures in upper middle management or church leadership…there is just no way to adequately protect the identities of the innocent! So, something else will strike me – something that brings me Joy. And then I will start to blog again with regularity.
Until then, thank you to the 100 or so folks that have read along through the years and I hope that you will keep checking new posts when they someday come out. Feel free to make suggestions, ask questions, seek photos, say hi. Stay in touch (one of the real, unanticipated, pluses to blogging which truly does bring much Joy) and be well, Reader-Friends!
Christmas indeed came early! We received wonderful news for Gabriel at Children’s Hospital Los Angeles. While his left eye is in stage 4 (of 5) of Coats Disease, his right eye appears disease free! Truly, we thanked God. We also thank our doctor and all of the wonderful people in our life praying for and pulling for Gabriel. Even with this good news, I will never rest easy – nervous of eye injury or onset of Coats in the second eye (which is very rare) – because it is my nature. But with this news we can focus on daily life again. And for the first time in more than a month, with pain in check, Gabriel is seeming like himself again. I forgot how early he wakes up when he is feeling good…
Because I find it fascinating I want to share two images with you. The first (on right) is the normal network of blood vessels. This is Gabriel’s alright right eye. And next image is the blood vessels in Gabriel’s left eye. If I didn’t know what that was an image of I think I would find some art and beauty there. Even still, though it is the embodiment of an abnormality, it is a unique part of sweet Gabriel.
And with that, let me thank all you for caring about Gabriel on this journey. Whether you are a praying person or one who thinks good thoughts (are those so different?) – I do believe in the power of intention and that helped to bring about our happy outcome. To be sure, we have other treatments to attend and issues to monitor but those will go on through the years.
With our Christmas wish granted, I wish you all a Merry Christmas, if you celebrate, and a happy, healthy New Year to all!
(P.S. The derailed Living Project of life lessons will return and wrap up in 2014…see you then!)
It took longer to have something to update you on in regards to Gabriel than I anticipated! Our marvelous local medical team helped us work through some red tape involved with being referred out of network/out of state and we were able to finally see Dr. Lee on December 2. He and his staff run a tight ship and were very good to us. With amazing speed, and we hope, accuracy he diagnosed Coats’ Disease.
Gabriel’s first selfie
This is a rare disease – Dr. Lee sees hundreds of children every year (every week by the looks of his schedule!) and sees about 20 cases per year. This is fewer than retinoblastoma which he estimated at 50 per year. We are thankful that we have had three doctors independently report that they do not think this is a cancer. We will in the next week, or two, return to LA for an exam under anesthesia where there will be a few different exams done on the unsighted eye to see if we confirm the diagnosis and stop the progress of the disease (Gabriel has since the initial finding had eye pain and increased pressure, being treated as glaucoma, due to this progressing). They will also re-verify that this isn’t cancer and look at the sighted eye to make sure it is in the clear. So yes, we still need lots of good thoughts and strong prayers for that…I really can believe it will all be ok if we get good news on his right eye. Coats Disease is most often unilateral and affects just one eye but can in even rarer cases affect both eyes possibly leading to blindness.
As any parent out there can imagine even saying (typing) the word “blind” is terribly hard. That said, I have to say that one of the bright spots in this journey has been the support and love shown us from just about all fronts…family and friends, co-workers, church family, reader-friends…it has been amazing. And in that support has been far more shared experience than I would have imagined. “Oh,” says one couple, “our son has a false eye – it isn’t the end of the world.” I need to hear these things! A co-worker pulled me aside at a conference to ask with great concern how Gabriel was faring and revealed that he himself has vision in only one eye. We started to joke that he could actually be a pirate someday – and it helped me see that this is, as noted, not the end of the world. And I have talked with a close family member about her experience having sight in one eye – it isn’t a big deal, she says. The verdict is in – it will really be just fine. And I will totally believe that as soon as I know that right eye is, in fact, right. What a great Christmas present that could be! Hmmm…I haven’t done this is a long time: Dear Santa…
Last Friday we took the boys to the ophthalmologist. Often young children do not get eye exams. For us, years ago, Dante showed signs that his droopy eyelid was interfering with his vision, or so I thought. Turned out the droopy eyelid would at some point play into his vision but at 9 months he was already showing signs of amblyopia, or using the dominant eye and allowing the weaker eye to be lazy. So at 9 months Dante got glasses – loved them – and we have been going back every 6-12 months since then. This was Gabriel’s first appointment at a still young two and a half. I had noticed earlier in the summer that his eyes didn’t seem to track together perfectly and I thought maybe he was getting a lazy eye as well. We called to make our appointment for Dante and added in Gabriel. As there was nothing urgent we didn’t ask to advance our appointments and got to go in last Friday.
Happily, Dante tested 20/20 with both eyes with his glasses on. Perfect. His droopy eyelid has been starting to bother him and it is now an appropriate time to have surgery on that. Also good news and expected.
Gabriel went into a separate exam room with Nathan while I sat with Dante. We finished up and joined the other boys. Nathan immediately pointed out how when you covered Gabriel’s right eye he couldn’t do the tests and would brush the cover away. Hmm, I thought, he will definitely need glasses. I also showed our doctor a photo of Gabriel. She looked at it and at me and asked what I was showing her. That his eyes didn’t seem quite lined – that something was off. She pointed out that the eyes were parallel but that there was a “different” reflection in the left eye. We would want to look at that. Ok…let’s look.
The ophthalmologist, a fabulous woman from the South who carries a funny old collapsing giraffe toy in her lab coat to check basic vision functions, examined Gabriel’s eyes briefly and then did dilation. Gabriel was a trooper – trusting us to be there with him and ignoring any discomfort. Still sitting on Nathan’s lap I was the one to stand over the doctor’s shoulders and whom she showed what she saw. In the first, right, eye, she told me to look and notice how very dark it was, no reflection. In the other eye, the left, she had me look and see the white reflection. Yep, I clearly saw that. This white tissue reflecting he light was (is) Gabriel’s retina. A detached retina, if you have never encountered it, is very serious. I think, in fact, that is what I piped out, “That’s serious.” Yes, agreed our doctor, we will get you in to see the retina specialist immediately.
I hate medical things that need to happen right now. The things busy doctors will rearrange their schedules for. Hate.
The retina specialist had us drive right over but was called into surgery by the time we arrived. We came back a few hours later and were seen while she took a break from the surgery. If I hate medical things that encourage schedule changes, I really hate medical things that warrant interrupting surgery. Really hate.
All this while, Nathan and I are rather clueless about what we might be doing so urgently other than reattaching the retina. A friend of mine had two detached retinas and I knew the surgery would be urgent. First there was another dilation (and again Gabriel was a trooper) and a confirmation that his retina was floating in the vitreous fluid of his eye. Then came the ultrasound, and me asking, what are you looking for with the ultrasound? Simple, one word answer: Cancer. Ultrasound, go. Tears go. Helpless plea for prayers over social media, go.
Gabriel was a model patient – still, calm, hands down, so trusting. The specialist got all the angles she wanted and sat down with a sigh. No cancer. More tears, go. Thank you prayers, go.
The diagnosis was a detached retina with little chance, if any, for reattachment, second opinion needed. Currently, though Gabriel may have some shadow and light perception, he is blind in his left eye. And our retina specialist, who takes on the toughest cases in Nevada, is sending us to Dr. Thomas Lee at Children’s Hospital, Los Angeles, who takes on the toughest cases in the country. That is apparently us since Dr. Lee agreed to take us on last week. We are waiting for insurance and scheduling and all that now. That said, our growing team of professionals have been responsive, thorough and understanding. Our ophthalmologist has been taking my calls personally – no voice mail, no wait. Our specialist called the day after the ultrasound test, a Saturday, to talk more thoroughly about the possibilities and see what questions we had come up with. The insurance handlers have been calling when they say they will. I am so thankful that I noticed something amiss and we have had this medical team spring up around us.
This post is partly to just tell our story. I find I need that catharsis as there is worry, grief and hope all mixed up in our family right now. More though, I know many if not most of my readers have small children. And those who don’t, probably know people with small children. And everyone with small children can easily see if their child has retina problems. We all take thousands of pictures of our children now, thanks to our smart phones. Look those photos over and see if you notice a recurring white or yellow reflection in the eye (most likely just one eye). Run, don’t walk, to your nearest ophthalmologist and insist on a dilation exam. Our fabulous Southern Belle ophthalmologist did such a fabulous job of remaining calm once I showed her the image of Gabriel though I am convinced in that moment she knew what she would find. Children’s retinas don’t detach at random. Though we have not gone through the diagnosis of why this happened or if the other eye is at risk, the best I can tell retinoblastoma (cancer), Coat’s Disease (faulty blood vessel/retina relationship) or a few other fairly serious diseases are often in play. Or as Nathan keeps pointing out, it could just be a detached retina. You still want to get that checked out as detached retinas, untreated, will result in permanent vision loss.
I believe that Gabriel’s retina has been detached for at least a year. I have found that “different reflection” or glow clearly in photos a year old. I have scattered images of Gabriel through this post – did you notice that “different reflection”? I think too many of us would not until we are really looking for it. And, once you see it, is it possible to look past the glow?
That uber-specialist, Dr. Lee, that we have been referred to along with a mom in a similar situation started a campaign a few years ago: Know the Glow. Look into this site and links here to see more examples and more stories (because I think every mom who has received this news has put up a blog post about it!). Please share our story freely and these links. Enjoy looking at family photos and see what you see.
Updates to come on our sweet Gabriel! Seen here in his new, beloved, safety glasses:
Lying has become common place and largely accepted. I hate this – lying sad and repugnant. Seems like a strong statement but it is true. When I hear in the news about politics, business, religious leaders and (of less concern but perhaps bigger influence) celebrities, lies are used freely under the euphemisms of forgotten facts and misstatements. What makes me sad is that the mainstream public has become numb to this kind of poor ethical behavior that increasingly it is becoming the norm. It is so disheartening because the liars lie for self-gain; for covering up bad behavior; and avoiding further discussion or discovery. No one is out there lying their way to world peace.
Look, in life, there will be times when you need to tell someone they look good when they don’t or maybe you will want to throw a surprise party or maybe there is something embarrassing you don’t want to talk about. White lies exist. There is tact to consider. There is discretion. That said, lying only works when no one is looking. Having character is doing the right thing when no one is looking. If having good character isn’t enough for you, it doesn’t hurt to keep in mind that more than ever, someone is always looking. And most likely electronically encrypting…
There is a theme in what I have been saying – the people you associate with will make a difference in your behavior. Anyone who encourages you or pressures you to lie is acting in their own interest, not yours (even when they claim otherwise) and eventually, if not consistently, they will lie to you. And it feels awful to be lied to. The bottom drops out of a relationship where there are lies uncovered. And that loss is virtually impossible to regain. This is what you do to others when you lie.
In reading research about why kids lie I see it is because they tell their parents and teachers what they think they want to hear. No, I wasn’t smoking. Yes, I did my homework. That evolves to bigger things as you get older – with similar rationale. Saying what you think the other person wants to hear, not what is true, the liar hiding behind lies – trying to get away with something or avoid dealing with an issue. No, I am not addicted to pain pills. Yes, I put all of those funds in the company’s account. (And yes, I know there is a huge space between undone homework and embezzlement bot, oh, the slippery slope!!)
I want you to know that what I want to hear is what’s real. You dad wants to hear what is real. Most people do, even when it is hard to hear. Just work on being tactful. Honesty is the best policy. This means being honest with yourself too and facing problems head on – lying to yourself is just as bad as lying to someone else.
I am thankful routinely that I was taught the value of honesty early on; that I work for a company that emphasizes ethics, including honesty; and that the friends and family in my life are honest, up front folks. (Note: honesty also cuts way back on “drama.”)
Pinnocchio; Source: vpzone (flickr)
It may seem complex but it boils down pretty simply:
- Don’t behave in a way that you later need to lie about
- Don’t plan behavior that will require you to lie.
- Don’t associate – work or play – with those who expect or accept lying.
Lies weigh you down – you need to keep track of what really happened and what version you offered up and to whom. It wastes energy and adds risk to your relationships. Simply, it is ugly behavior and isn’t worth it. Be your best and you won’t need to lie about a thing.
**Welcome to Tan/Green! I started out blogging about trying to be a granola mom in a fast food world. Now I have embarked on a yearlong project sharing lessons with my sons for what I am pretty sure are boys most worrisome years, about ages 15-30. **