Tuesday, July 29, 2014

Things That Piss Me Off Tuesday - the all diabetes all the time edition

I'm just going to apologize in advance for this post. This series is ordinarily all about me ranting about the things going on in the world, sharing news stories, railing against injustices.

This week, my worldview is a little narrower. Not because there isn't a ton going on in the world, but because right now I'm finding that my focus is a little more local, a little more personal.

It's hard to worry too much about what is happening on the other side of the world when you have a kid going in for surgery. In moments like that, I've found that everything else that happens in the world all continues to happen. It doesn't need or require my involvement to continue. It doesn't require me to keep paying attention. It doesn't.

In those moments, I've found that I get so wrapped up in trying to wrangle health insurance companies and dealing with scheduling nightmares and finding providers and surgeons that suit our individual needs and doing it all within set parameters and deadlines. I get so caught up in that until the day arrives when surgery is scheduled and everything else in my world stops.

My perception of the world slows, it draws in closer, and all I can focus on is the clock ticking in the waiting room.

That's where I was yesterday.

Monday is ordinarily my most productive day, when I get the whole week laid out in terms of my writing and topics. I didn't do any of that.

Instead, I held the hand of my little girl and kissed her forehead and told her that everything was going to be just fine, quieting the voices in my head.

Consequently, this post isn't what it normally would be. And I might be "off" for the rest of the week.

Also, the surgery went well. It was an attempt to reset a broken nose. We will have to see how she heals.

After we got home from the hospital and rested a bit, we got ready to attend a wedding. (see the above mention of the scheduling nightmare...)

Sitting at our table, a couple that I'd never met, but one that we got along with splendidly. The antics of the kids entertained them, and I was immediately grateful that they'd parented four boys so they embraced us more than most people ever do.

At some point during the reception, I sat Little Boy down after asking him how he felt and took out his glucose meter, trying to be discreet about it. The gentleman on the other side of the table asked about it, asked if he was diabetic. My answer, the one I always give, the sorta but not quite yet, yes, no, maybe, probably. 

This limbo stuff. Man.

Anyhow, he expressed a compassion and empathy that I don't normally get from strangers who see me poking my kid with needles. He told me that he had recently been diagnosed Type 2, that he had a long family history of it, that everyone in his family seems to get it eventually, that he'd lost his mother fairly young and fairly quickly because of her unwillingness to try and control it.

Oh, the feels.

His mother was in her mid 70s when she died.

Mine was only 60.

And it's not fair.

We swapped stories like war veterans of the things we'd seen and what they went through and the constant frustrations of caring about someone who doesn't want to take care of themselves.

We sat there, this stranger and I, vowing that we would take better care of our own health because of what we had seen, what we had lived through, what we had lost. Who we had lost.

Then the conversation shifted to his wife. Her sister, now 70 years old, was diagnosed Type 1 at nine years old. She's still here, still kicking ass. We talked at length about how remarkable her life had been, how much harder this condition was to manage when she was diagnosed, how doctors hadn't expected her to survive the diagnosis period first, then childhood, and then and then and then...and she is still here.

It gave me so much hope.

The sister, unlike his mother and mine, understood that taking care of herself was not an option. It was required if she wanted to stay alive.

That's the thing about this disease, regardless of which form of it you deal with. Watching carbs and reading labels and being conscious of sugars and all that is required, not because we'd like to drop a few pounds or because we feel like being healthy today, but because we want to keep living.

We don't get cheat days or vacations or the luxury of indulgences. We don't just get to let ourselves go for a little while and then get back on the wagon because we could be doing organ damage.

We spoke for quite a bit about how it was a blessing and a curse that Little Boy was so young. He's been dealing with this almost two years now, and he's never known any different. To him, it's normal to get poked and have mom ask you how you are feeling and have her tell you to drink water. It's normal for there to be good days and bad days. It's normal for him to ask adults if he can eat something or not. It's normal for him to go trick or treating and then not eat most of the candy.

It's normal for him, but none of it is normal.

He just doesn't know it. Which is the blessing part. There isn't anything for him to adjust to...this is just the way it is.

We talked about how this woman's sister struggled as she went through her teenage years, and how those years tend to be a time of struggle for so many T1 kids. Rebellion is a part of being a teenager, but these kids have so much else going on. They just decide that they don't want to be diabetic one day, or that they aren't going to listen to mom and dad anymore about what to eat and what not to eat. They sneak things, they fight back...they do what teenagers are supposed to do, except that unlike all the other kids, these rebellions can land them in the ICU.

For a parent of a T1 kid, it's more than a little bit terrifying honestly.

This man on the other side of the table asked about my meter when I took it out. I told him that I was borderline Type 2, that my mom was probably only one of several people in the family with it, that I'd imagined that many people in the prior generation had it too but were never diagnosed, that I've had gestational every single time I have been pregnant, and that it has gotten worse every time.

More empathy.

I guess I am just jaded. To be in the presence of someone who actually "got it", who didn't shame us for these things we deal with, who didn't try to cure us with something that does nothing...it was nice. He wasn't just being nosy, he wasn't being rude, he wasn't being dismissive. He was commiserating.

He understood because he lives it.

Most doctors don't even understand what the personal reality of this disease is really like.

This disease is a big deal. It's all encompassing. It affects everything about your day. It affects what and when you eat, how you feel. It's overwhelming at times, and so few people understand.

I get people who try to tell me all the time that I need to just relax. That it's not a big deal. That "at least it's not ________" (insert any other condition in the world).

To all those people, I issue this challenge. Set a timer for 8 different times a day, one of which needs to be in the middle of the night. Poke yourself with needles. Count the carbs in everything you eat, keep track of all of it. Ignore hunger and eat when you are supposed to eat. Never make the mistake of leaving home without your meter and a source of fast acting carbs.

Do it just for one day, then tell me this disease isn't a big deal.

Get up and do it every single day...welcome to our lives. 

To those who understand, fistbumps of solidarity. xo

Sunday, July 27, 2014

Grief, Loss and Gender

Last week, I wrote a post at the urging of a friend.

This particular friend has endured years of struggling with fertility issues. There have been pregnancies, but those pregnancies haven't ended the way they should have. They ended after only a few weeks and brought a fresh dose of heartache each time.

This particular friend reached out to me and told me what was going on after they'd asked for consideration from their Facebook friends on the issue. Specifically, they requested that people stop trying to placate them with the idea that they can always adopt if this doesn't work out.

This particular friend had a particularly bad day after posting that status.

This particular friend reached out to me and asked me to write about it, and I did. If you haven't read that post, you can find it here. It revolves primarily around the painful truth that far too many of us have lived. The truth is this: the very people who intend to help you with their words are more often rubbing salt in your wounds.

Within an hour of so of posting it and sharing this link with this particular friend, it started to pick up shares. The friend thanked me for saying what they'd tried to find the words for. Those who understood this place all too well related. They shared it. They messaged and commented.

What some of them assumed, though, opened up another can of worms.

Several people assumed that this friend of mine, the one who mourned all these pregnancies, the one who wants nothing more than for people to stop suggesting alternatives that don't really exist, was a woman.

He's not.

He saw the comments, the kind words, the notes from readers urging me to send wishes to my friend.

And then he wondered.

Why had so many assumed he was the woman, the mother?


Though I can't say for certain, I have a hunch. That hunch is rooted in my personal experiences, firmly grounded in the experiences that others have shared with me, still more in the stories of the men who contributed to the book about child loss and infertility that I was a part of creating last year.

That book, Sunshine After The Storm, was one that originated with mothers. The idea of it, something that started deep in the heart and soul of our leader. Over the course of several months, she reached out to some of us and we reached out to more, asking others to share their stories with us.
Initially, the project was 100% female written. I'm not even sure how it came up one day, but we realized that there was a huge part of the story missing if we only ever included our perspective, the one belonging to the women. We needed the voices of the men, the fathers of these children.

We were so fortunate that several of them jumped in to the project and provided that voice.

Even in the place we were all coming from early on in the process, we were focused on our grief. We were focused on sharing our stories and experiences, what we had learned, how we had coped.

We weren't the whole story.

Where were the men? Why weren't they there from the beginning?

Part of that, a big part of it, is likely because our society (and most modern day societies, for that matter) is one that attaches far more emotion to the mother relationship than to the father relationship. Part of that is necessarily connected to the physical aspect. As women, we are the ones who bear the children. Our bodies house them, sometimes our bodies can't sustain them, sometimes our bodies betray us, sometimes we are just unlucky, sometimes we don't ever know what happened, but it happened and it happened inside us. Our bodies are the ones poked and prodded and drugged and manipulated.

We are, as women, expected to bond with this baby from the moment we know we are pregnant.

We are, as women, expected to be emotionally connected from that day forward for the rest of our lives.

We are, as women, the ones that the losses are focused on. People couch the terms related to miscarriage in words that connect the baby to us. We "lost" the baby. The mothers. The mothers lost the baby. The fathers didn't.

Except that they did. Perhaps not in the intimate physical way we did, but their loss is there never the less.

Or we are the ones who can't have children, even if the cause of infertility is never known or male in nature.

While women are expected to bond with the mere idea of a pregnancy instantly, our society doesn't expect men to make that connection until after birth, maybe even later. Men are expected to be strong, stoic, steady, distant, less connected. Partially this is because of the truth that they aren't the ones dealing with the physical, but a larger part of it is societal.

Men just aren't supposed to be overly emotional in any way. Grief isn't tolerable coming from even the mothers, it's largely ignored for the men.

Think about it. How many of you out there have lost a child, whether through miscarriage, through stillbirth, through early infant loss, through any other way it happens? How many of you have endured infertility?

How many of you who've been in that place ever had friends and family express concern for the man that lost that child? How many have experienced an equal outpouring of support for a man enduring infertility?

If you did at all, was the outpouring of concern disproportionately targeted at the woman?

I'm virtually certain that it was. I know it was for us.

We were expecting. 

I lost the baby.

People wanted to know how I was.

No one ever asked how he was. 

Grief is a difficult enough topic to discuss as it is, the grief of a struggle with infertility, of a lost pregnancy, of a lost child, too much for most people to stomach. They don't want you to be sad because they can't deal with it. We are urged to get over it, the mothers of these children, the women who can't conceive, but at least people assumed that we had something to mourn in the first place.

For the men, for the fathers, there is far too often no acknowledgement of their loss at all.

If they confide in someone about their struggle with infertility, of their lost pregnancies, the conversation inevitably shifts to the women. How is she handling it all? Is she okay?

The man, on the other hand, is assumed to be okay, to be strong, to be sturdy and stable and grounded.

And perhaps some of them are. Perhaps some of them are more equipped to deal with these losses alone, in a societal vacuum. Perhaps they can cope without needing others. Perhaps.

But we shouldn't assume that they can anymore than we should assume that about women.

And yet, it happens every single day.

On behalf of my friend and all the fathers out there without the children that should be with them, I ask that we do a better job of remembering their grief too.

It won't be the same as the grief of a mother. It can't be. It never would be. The experience of every single person in every single situation is necessarily different, even among mothers who have been through very similar circumstances. That doesn't mean for one second that the grief of the father is less, that it is more transient, that it is something we can shrug off.

We need to ask them how they are too. We need to be the shoulder they can lean on. We need to be the support for them, particularly in a world that largely ignores their suffering.

They are hurting too.

They shouldn't have to do it alone.

Thursday, July 24, 2014

Well Meaning People and the Cruel Things They Say About Infertility, Loss and Adoption

I had planned to write about something else today, but then yesterday I got a message from one of my oldest friends. This friend, half of a couple that has struggled for years in the pursuit of having children. This friend, one who has been riding the emotional roller coaster for so long that they don't even remember what it is really like to be standing off to the side anymore.

This friend has, in that time, rejoiced with positive pregnancy test after test, only to have the pregnancies meet the same fate a few weeks down the road. They've lost six babies.


Yesterday, a Facebook post prompted by heartache, asking for others to be considerate with their words. Asking, more specifically, for those who console themselves with the situations of others in that place by saying the following words not to do it anymore:

At least you can always adopt.

This request for consideration of those in that place quickly spiraled out of control. Some comments screamed that the writer clearly was concerned only with their own feelings or experiences. They not only missed the point, but they threw it back in my friend's face. But they mean well. But I mean well. But it worked for someone else. But but but but but but....

Basically I'm sorry but I'm not sorry.

As though "I tried" to do the right thing is ever sufficient to soothe the suffering of the person you've hurt with your words. 

You have to wonder at what point in our society people decided that their emotional response to the tragedies of another became more important than the suffering of the one actually living it.

This friend of mine, having been in this place for a while now, understands the realities of adoption more than most people ever could. Though there is this huge faction of people that labors under the assumption that it could ever be a possible alternative to every couple who chose it, reality tells us otherwise.

Adoption is expensive. Very expensive. For many people, prohibitively so. It just isn't an option for everyone.  

Adoption is complicated. There are an abundance of issues that people who've never had to consider it don't even realize exist. Issues that are different in every single situation. Issues that those on the outside aren't privy to.

Adoption is fickle. For as many couples that I know who have successfully maneuvered the process, there are more who have had something break down along the way. Last minute changes of plans. Heartbreak that no one could see coming. 

It isn't this simple solution that so many people think it is. To pretend that it ever could be, rubbing salt on a raw, open wound.

That wasn't enough, though.

There were the God's plan comments. Because there are always the God's plan comments. Because there are, apparently, really people in this world that believe that God has a hand in every single tragedy that befalls us, that he puts us through loss after loss after loss because we deserve to be tested in this way or that. That he has something special in mind for us all, and that some people are chosen to suffer more.

I don't buy it. 

I don't think God points around and says eenie meanie minie mo then selects which couples will be forced to endure infertility.

I don't think God decides that some babies should to die in the womb because their parents need to learn some lesson that can't be taught otherwise.

I don't think God gives kids cancer intentionally.

I don't.

If ideas like this comfort people, if they find solace in the notion that every single thing that ever happens is at the behest of the great puppetmaster, fine. Honestly. Whatever brings people peace is totally fine with me. If the concept of "God's plan" works for you, great.

What isn't okay is to take your beliefs and put them on someone else in a situation that you could never possibly understand.

Your words might bring you some comfort, but you're essentially telling them that God chose them to suffer. God chose them to endure. God chose their children to die. Whatever. Think about that before you say those words, and ask yourself if you truly believe you are saying these things to help the person being spoken to or if you are just trying to soothe your own soul.

I won't even go into some of the other comments that were left on that status because they are so abhorrent. My jaw hit the floor. They don't need to be revisited.

Suffice to say that if there is a time when a friend entrusts you in any way with the raw emotion of suffering and loss, with pain and grief, do not use it as an occasion to crack an inappropriate joke. You'll just look like an asshole, and you'll look like one even if you are ordinarily a kind and generous person, because in that moment, you were an asshole. 

Instead, if you have a friend who is in this place, a friend experiencing infertility, a friend who has endured pregnancy losses...try these approaches instead.

- Say I'm so sorry. Then stop talking. Let them talk.

- Comfort them in whatever way they need. This isn't about you. Offer to listen, to be the shoulder to cry on, to be the soft place to land, to be the place that they unload all their anger and frustration at their situation...because they keep it bottled up inside far more than you know.

- Understand that chances are pretty high that they've been struggling with their situation a while before they even told you. 

- Don't placate them with lofty ideas. 

- Don't tell them to relax.

- Don't tell them that everything works out for the best. They know it doesn't.

- Don't tell them about that one person you know that had a miracle baby. Lots of people don't get that chance. Ever.

- Don't try to equate their situation with something completely different.

- Don't minimize their losses. Don't believe for one second that "at least you lost the baby early" is a consolation. It isn't.

- Don't assume they'll get pregnant or be able to adopt later on. They may not be able. Adoption may not even be on the table.

- Don't start sending them articles online or tagging them on Facebook with fads or trends or posts about how eating this or taking that supplement will increase fertility. They will pursue the information they need with their doctors and don't need someone telling them that eating kale will make them more fertile.

- Ask them how you can help, if you can help in any way. There may be nothing tangible that you can do, but let them know that you are there to support them.

- If you can't do these things, just be quiet. Seriously. Don't comment, don't make light of their situation, don't try to make them feel better. Just don't.

And for the love, if someone asks for consideration, give it or keep your opinions to yourself. 

My dear friend, I am so sorry that you are surrounded by people so patently incapable of being the support you need. Wishing for peace and strength as you weather these challenges and deal with the well meaning but cruel people of this world. xo

Wednesday, July 23, 2014

Baby names and the opinions of others...

As I round (literally) the bend here towards the end of this pregnancy, nesting has started to kick in completely. It's complicated by the fact that my house is still very much in the middle of a fairly major renovation being done to accommodate the little guy. All the kids have moved rooms this summer, and I still have a shred of my sanity left.


The girls are sharing the loft now, which we are converting into a bedroom. To do that, we are walling in the loft. It's getting there. Slowly.

Until that is done, everything else is pretty much on hold. Including the tiny room next to ours that will be his soon. It's painted and we have the crib to put back together, but the rest of it still isn't anywhere near done yet.

Tick tock.

We are doing a Star Wars themed nursery because we both finally made peace with our inner nerds, and decided that a Star Wars nursery wasn't necessarily any more ridiculous than one with ladybugs or baseball-playing-teddy-bears. Plus, the older I get, the more the cutesy stuff bugs me. So, instead of the stuff they sell in those baby warehouse stores, we are looking for lightsabers and Wookies.

It's okay. I know I have issues.

Anyhow, we picked his first name a while back. Actually, the other kids were pretty influential and were totally in on it too. The name was kind of their idea, and there's a story behind what it is and why we picked it that I might tell someday. I haven't decided yet. I generally refer to him as Little Asskicker around here. I have nicknames for all the other kids and the husband, mostly for privacy reasons.

But it's a really cool story and I may share it at some point.

We just really started talking about middle names recently, and I think we have that figured out too.

One of the many, many things that happens when you are pregnant is that everyone asks what "it" is. Then, if they get that piece of information out of you, they ask the next logical question, which is what the name will be.

I should have learned not to tell people. Honestly. By now you'd think I have done this enough times that I would have thrown a filter on my mouth and not let that piece of information sneak out.


I didn't learn.

We love the name. Like LOVE it. The fact that it carries a bit more meaning and the other kids helped choose it makes it even more awesome.

None of that does anything to stop other people from crinkling up their faces and asking us if we're sure. 

We've even had a few people lobby fairly aggressively to get us to change our minds, giving reason after reason why we needed to pick something else.

I wish I was kidding.

It's not a super common name, but we never set out to name any of our kids common or trendy names. The Oldest's name we chose because it was an old Gaelic name...not realizing it would become a firmly seated top 10 name beginning that year and lasting almost a decade. Freckles' real name was a lot more popular a generation ago. Mini Me's name has stayed fairly consistent in popularity over the years...not in the top 10, but in the top 100. We spelled it in an unconventional way because we knew we would be using a nickname for her from the start.

Then there is Little Boy. We hadn't agreed on a name for him until after he was born, but to both of us, it didn't really matter all that much since we knew we'd be using initials for him. We just needed a first name that started with the letter we chose. He is so used to being called by his initials that he fairly often refuses to even acknowledge people who use his given first name.

They all have family inspired middle names. Little Asskicker will too.

I think we'll keep the middle name quiet, even with family, until he's here though...mostly because I don't want to deal with the opinions everyone else has about it.

I try to remind myself that people mean well when they criticize choices like this, but it's almost impossible not to get frustrated. Why is it so hard for people to just be happy for you? Why do they feel so compelled to inject their opinions into the conversation? Why is picking a name for a baby something that everyone seems to think they get to vote on?

My home isn't a democracy open to the will of the people. Honest.

What about you all? Have you had to deal with this? How did you handle it?

Tuesday, July 22, 2014

Things That Piss Me Off Tuesday - the militarization of the border edition

Hi there. It's a good thing it is Tuesday because I've been pissed off for days.

Not having a great week around here. I'll get to that in a bit. First up, the other things pissing me off this week.

The Mess at the Border
This entire situation just gets worse and worse. I hate the fact that it's being couched as an issue of illegal immigration in the first place. For the most part, the kids at issue in the situation, the ones fleeing violence in other countries, are actively seeking out Border Patrol agents. They aren't armed. They aren't hostile. They aren't drug runners. They aren't here to mooch off our system. They are here because their parents, in an act of desperation, sent them here as an attempt to save their lives.

They are coming to this country, much like unaccompanied minors have done for over 100 years.

The entire situation has been spun in the press to make it seem like it's an invasion of sorts. Certain politicians and talking heads have even used that word. The wonder that is Gov. Rick Perry sent National Guard troops to "protect" the border today. From what, exactly??? He cites crimes committed by illegal immigrants as his justification for this gross demonstration of force (which some are questioning the propriety of already)...but he's missing the point. This isn't an invasion. This isn't even really an immigration issue. This is a human rights issue.

I could get into all the legal nuances of the situation, but the quick and dirty version is this.

- the kids can't be immediately sent back because they aren't from a bordering nation
- the current immigration laws pertaining to unaccompanied minors were mostly written during the Bush administration
- deportation proceedings can only be done through the courts, which are already backlogged
- approximately a third of them have a parent in the US, so to "send them back to their parents" would be allowing them to stay
- this is really more of a humanitarian issue than an immigration issue, no matter what the pundits say

But yeah, let's totally suit up and fly military helicopters over the region just so this jerk of a Governor can get a photo op.

From some dude's fb page, called this jerk a hero.
“Give me your tired, your poor, 
Your huddled masses yearning to breathe free, 
The wretched refuse of your teeming shore. 
Send these, the homeless, tempest-tossed, to me: 
I lift my lamp beside the golden door.” 
- Emma Lazarus
- a.k.a. the quote on the Statue of Liberty

Everything About Flight 17
Unlike the situation with the other doomed Malaysia flight earlier this year, as soon as the news hit with this one, I had a sinking feeling in my gut that it had been brought down on purpose. Or not even on purpose, but accidentally, and at the hands of human involvement.

There are so many lingering questions, many of which we might never actually get answers to because of the pissing match going on. Almost 300 people died...but that is being overlooked almost in the wake of everything else that has happened.

Did Putin give explicit orders to shoot this plane down, thinking it was a military cargo transport? No, probably not....but he had a hand in arming the rebels that most likely did it. He has had a hand in this conflict all along. With the black boxes being shuffled off and the bodies being tampered with and the crash site being unsecured and dangerous and looted...we'll probably never know exactly what happened.

Of course, this all raises the obvious question of why the flight was in hostile airspace in the first place. Many airlines had already diverted around the area, but Malaysia opted not to. A more direct route made more sense to them. It was probably cheaper to run a shorter flight straight through than spend more on gas and go around it.

The Epidemic of Parent Shaming and Blaming
There are so many cases anymore that I could be here all day just finding articles to link. Parents arrested, charged. Kids taken. Names drug through the mud on social media. Blog after blog after blog calling people out. Then the requisite blogs in reaction defending the parents.

Being a parent is hard. Really fucking hard. Being a parent of a "normal" kid is hard (whatever a normal kid is anyway)...being a parent of a kid who can't always read social cues, who has mental illness issues going on, who has rage problems, who acts out...sooooo much worse.

Being a parent with the resources and financial stability and time and requisite sanity to cope with whatever their kids throw at them is hard. Being a parent without some or all of those things, damn near impossible.

What has happened in the past few years and seems to get worse all the time is this epidemic of judging and blaming. The internet police are here to tell you what you're doing wrong ALL THE TIME. They'll take pictures of you when your kid throws a fit at the store now and post them online to bash you...without understanding that maybe there is more to the story. Maybe that kid isn't just being a brat. Maybe that parent isn't just lazy. Maybe that kid lost his shit in the store because he's autistic or because he has oppositional defiance disorder or BECAUSE HE'S A KID AND SOMETIMES EVEN GOOD KIDS ARE SHITHEADS.

Public shaming isn't enough...nooooo. Some of these "well meaning" strangers will call the police. Or social services. Or whatever. Because they've decided, not knowing a damn thing about you or your kid aside from the 3 minutes they've now witnessed, you're a failure as a parent.

I shit you not, I once had a kid lay down in the path of the automatic doors at Target, alternate between screaming at the top of her lungs and holding her breath. She threw such a temper tantrum that she almost passed out.

I suppose I should consider myself lucky that no one believed I was abusing her that day. She was throwing a fit because she wanted a pony and I didn't get her a pony.

God forbid.

Whatever happened to giving people the benefit of the doubt? Whatever happened to minding your own damn business? Whatever happened to offering to help the clearly overwhelmed parent instead of standing there with your freaking phone, taking pictures and judging them???

Jesus, people. Knock it the hell off.

Health Care Rant
I'm beyond stressed out right now because of health insurance issues. All told, we have good insurance...you just have to be a fucking genius with the ability to multitask and find information that is mostly unavailable to actually utilize it.

Mutters under breath and gets ready to make some more damn phone calls.....

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