14 January 2015

Prematurity: they might not grow out of it after all...

He was a month old, but I still would have been in my third trimester.

They'll grow out of it: that is the preemie parent mantra sung to you from the minute your tiny bundle enters the world.

That alarm? Oh, he just forgot to breathe because his heart-rate dropped too low. We just need to stimulate him a little so he remembers. Don't worry. He'll grow out of it.

Your baby turning colors becomes an alternate reality where it's all no big deal. Just rub'em a little and they'll snap out of it. They'll be like, hey body: function! and all will be right as rain.

They grow out of it by two years.

That's what they say...
and that's what they said.

You don't have to adjust his age anymore.
Phew. ...cuz that was getting confusing!

He's six months ::funny look crosses person's face:: oh, except he's actually four months adjusted. Ohhh.

We had our diagnosis appointment this afternoon. What special need would Tristan have and how would we adjust our plans to support him? I was ready for anything. I thought possible autism...maybe anxiety or OCD. I did NOT for a moment think prematurity would be the diagnosis...

and there is that numb feeling again in my heart. The icy blood pumping through my body, the body that failed. The fire that stressed me out so badly I will never know that about to burst pregnancy horrors that so many moms whine over. I still hear the silence in the OR that was filled with so many people that it should have been loud...except we were all silent and waiting for the next heartbeat to sound over the speakers. I will never forget the night my body almost killed our son.

There are other things, too. He has a speech delay and low tone and we need more specialists, appointments, therapy, additional services, follow-ups, etc, etc, etc.

But when I asked if prematurity can just last forever the answer was essentially: yes, it can have lifelong effects. There was nothing deeply remarkable about his prematurity. He only had a level one brain bleed/hemorrhage that self corrected. He really struggled with apnea and bradycardia - both come with prematurity and in most cases do pass quickly (though it seems like forever).

However...sometimes prematurity can just...last.

He's great! Wonderful, socially engaging, and creative. Smart, quick to learn. He's just young/er...and needs help with receptive language, open ended discussion, and low tone (which he HAD grown out of at one point).

Those are his official special needs.
I'll dive into paperwork next week.

Thank you to everyone who has been supportive along our journey. I appreciate you all so much.

I'm just shocked that we're coming up on his fourth birthday and after being studied on video by one of the top teams in the country we have the same label we've always had. We just thought he'd grown out of it...

Edit: I should include that preemies now come with mega-rad medical binders with a business card holder, labeled sections, pen case, carrying handle, AND over-the-shoulder padded strap!!!! SWEET. :)

04 January 2015

Surviving Your Housefire: or how to help your friends and family

My beautiful House of Seven Gables replica canopy and heirloom hope chest.
I guess all I have left from our fire is advice...and support, of course. Everyone's experience is different - and reactions to the same fire will be unique, too. Like my husband and I have processed it in wildly different ways. We seemed to balance each other at the time and I can't imagine having gone through this without him.

Brief summary (our full story is available at the top of this site): our mentally disabled neighbor got mad at the people downstairs for telling him to be quiet so he poured accelerant down the hallway and on our doors, hoping to trap us inside. We were down the street picking up a few of my pregnancy cravings but the couple across from us had to climb out their fourth floor window and wait for the fire engines. The firestarter went back into his apartment but was later rescued by first responders. There wasn't enough to put him away and I hear he lives in our neighborhood still.

We lost everything...including both of my cats who huddled under the couch. Hidden. Dying together.

Now I'm going to pass on what I've learned from nearly four years of heartbreak and therapy for PTSD because several people have come to me asking about a loved one who is experiencing the devastation of a fire or natural disaster.


  • It is FAR worse than your worst nightmare or anything you've imagined. Remember to say, "I can't imagine." If you haven't lived through one you cannot imagine...no amount of empathy or brilliant imagination will be how horrifying it is...the smell, the soggy ashes sinking into your skin and nose so all you smell is the stink of things lost. Your feet squish on the floor which is now coated with soggy ceiling and your home is a menagerie of objects that have melted into strange shapes. Oh, that was my lamp?! Plastic hangers look like flower splatters on the floor. But it isn't real...yet.
  • SHOCK. They will be in shock. Let them set the tone. They might be cracking up or crying - or both at the same time. Find a point person/s to help organize things that will be needed.
  • Learn to accept help. Learn how to ask. It's humiliating at first. But people want to help. It makes them feel useful. I feel good giving things to people on a regular day--during a crisis I'm much happier if my favorite sweater that I never wear is making another girl feel pretty.
  • Accept help right away because people want to do the most in the beginning. The tragedy will pass quickly for them and they'll be shocked that years later you're still replacing things you never had or were donated and on their last leg.
  • Don't donate crap. I'm talking about the stuff you were going to throw out or give to Goodwill. I'd rather have one working pan than a dozen that are burnt. Remember, we've been looking at charred things for a long time. Clean is good. Finding out our style is nice too. Shoving a dollar into their pocket is one dollar more than they had before. It adds up. It's amazing.
  • Cook meals. Drop them off.
  • Do not give candles as a sorry-your-house-burned down gift (or when they get a new place).
  • Have someone keep a master list of needed items that the survivors can update with them.
  • Offer to help dig in the ashes with them. YOU HAVE TO WORK QUICKLY! Mold from the fightfighters' water-chemical mix is going to give it a healthy head start. 
  • Don't write something off as gone - it might air out.
  • Have someone look into a laundering service that can remove the smell of smoke from clothing. Makes sense right? You'll never think of it during a crisis. I heard about it a couple years later while reading Stephen King's book On Writing. He used to work at a laundromat where that was one of the things they handled. In Nowhere, Maine. I had clothes in seasonal bins that were dry but smelled so bad........I threw them out. I could cry even now thinking about how stupid that was.
  • STAGES OF GRIEF: absolutely. They will go through these - when? at their own rate. They are: denial and isolation; anger; bargaining (oh man that was a big one for me!); depression; acceptance.
Our fire happened two weeks before our wedding and then two weeks later my body gave out to stress and I delivered Tristan prematurely (at 30 weeks - story is also above). My contractions were killing him and he spent two months in NICU while we found a new apartment and tried to turn it into a home we could bring our preemie into. That was a separate trauma but the two were deeply intertwined. We also lost our jobs. I've never been through a harder time in my life.

Nearing my fourth anniversary I have finally moved into acceptance. I lingered in depression for a long, long time. Years. It still comes in waves but I've joined Prozac Nation and I am pro-active about working through my feelings. I went to a therapist that had specialized in PTSD/trauma survivors for more than 30 years. She had the experience...and I needed someone who understood. I felt petty crying over a lost home, dead cats, and a tiny baby who had breathing problems when compared to war veterans who'd seen...God knows what.

Every trauma is different but the emotions we go through are the same. They can vary in intensity but it's the same way out of the rabbit hole. She said some amazingly helpful things to me.

I still go in a few times a year. She set me on the path to being happier by challenging me to 30 minutes along outside every day and making a list of five things I'm thankful for daily. No matter how small. It can be: I like the way my bath gel smells (I do). Doesn't have to be earth shattering...but she said it's proven that people who do these things are happier.

There is a point I couldn't have done this...maybe. I got through each day as best as I could. I still hate that my Cabbage Patch Kids survived instead of my cats. But I'm no longer angry at them. They're still in a box. I have a bunch of paint and Sharpies also in a box. They survived so I felt I should keep them. Most of the paint is cooked. I will throw them out when I'm ready.

I still hurt so much...
but this is what I have to offer.

I am always here to listen if you think nobody is understanding.

I also encourage you to learn the art of asking which is something Amanda Palmer turned into a book recently for totally different reasons...though again, the feelings behind them are the same. She talks about it in this TED talk that is empowering if you're stubborn and want to do everything yourself. I have not read the book, though I feel I've written one in my heart. I will read her version one day.

My way - if you need something JUST ASK. I needed a charger for my iPod that I had with me in my purse that day. I asked on Facebook and a friend dropped off a pile of them at work that night. She happened to work at Apple.

If I needed something specific I just asked...oh, and Freecycle was a great resource for that. Join and ask.

What do I need now? My music. iTunes. I've gone digital. That's terribly hard to replace. The people who came to board up the windows so nobody can steal things...........STOLE! They stole all my CDs! It turns out the soot damage was too bad for them to work anyway...though they left my Tori Amos collection and three years later they worked all of a sudden. I'm happy I saved them.

That's all I can think of now, but I'll always keep this updated as things come to me...and they will. If you've experienced a loss like this please feel free to leave your advice in a comment.

Everyone is different - but I'm only me so this is what I can give.

Thanks, as always, to the firefighters who tried to save my world. You'll always be heroes of mine.

LO
VE
stephanie



11 November 2014

Ashes to ashes to ashes again OR why I don't sleep until February

My insanity will prevail.


Drop to the floor digging in the soggy ashes. It’s a good thing I remembered to bring my shovel this time. I realized that the melted bed has preserved everything I stored underneath it. I dig, I claw. 

Somehow there is a way to slide out the containers that hold the brass Christmas ornaments my parents started collecting for our family in 1973 when they were married. Right there is the box with all my craft supplies, too.

It’s there. Not all of it but there were so many more things I could salvage because I’m not pregnant anymore and I’ve had almost four years to plan better ways to rescue all the things the fire took.

My heart races.

Yes, that’s it. I had my son early, in time for the demolition so I could have gone back. I could have dug. There were still things that would have made it.

Why didn’t anyone offer to help Brandon dig?
or sit by the incubator while I did.

I didn’t care about ruining my clothes and I didn’t need my beat up rose boots anymore. I only wore them that day because I was saving both new pairs of Docs til these really wore out.

They’re expensive, you know.

Gloves. I could have used gloves. Then ashes wouldn’t have gotten under my nails and stained them. Like my feet were stained from the soggy soot bleeding through leather and socks.

How do you expect me to decorate for Christmas when the pink tinsel tree is stuck under the bed and along with our childhood stalkings?


My grandmother’s crystal was ready for Thanksgiving.
I didn’t even have to try for Halloween because those things stayed up all year.

But there is more I could have saved. I know I could have carried more than I did that once
…and the cats are really gone, right? Because I stopped checking found posters this year. …mostly.

How do you expect me to breathe, while the earth is turning and our bed is burning? 
Year after year after year….

How?



23 October 2014

Open Letter to Stampylonghead From a Special Needs Mom

special needs, videos help, stampylonghead helps special needs kids
One of many fan memes I found - I'd add an apostrophe if I could.


Dear Stampylonghead,

I first thought you were a video game called Stampylonglegs but now that I've gotten to know you better through my son I get it (and your proper name). You are a person who talks about Minecraft while playing it on YouTube videos.

You're a rockstar in this house, though and I think you should know about the life you've touched with your videos.

Our son Tristan has special needs. He has SPD (sensory processing disorder) and is undiagnosed with possibly autism, anxiety or ____. We don't know yet but he is very much a puzzle piece. He can't communicate much or answer most questions.

Last August he found your YouTube Channel, and a new part of him opened up. He plays games on his Kindle but all of a sudden was wound up in videos of Minecraft (those have to be watched on the laptop). In September he started going to preschool at a special needs school. When he came my husband was there with me as he got off the bus. He told us "friends" "bus" "no push friends" and then ran for his Kindle. He held it up to Papa and said "STAMPY?"

You see, he'd been wanting Minecraft but he's only three and we didn't think he'd understand. I told him that maybe if he asked Papa he'd get it for him after his first day of school - and he remembered.

Papa got him the game that has never been called Minecraft here. Just Stampy...and he understands it! ...in his own way.

He runs through his worlds lost in deep thought. Other times he narrates what he's doing with 'stampy'. "Yes, Stampylonghead...[and then I can't understand], that's right".

Whatever it is about your videos, your voice, your inflection when you speak. you've reached him. I don't doubt that you've reached many children (with or without special needs). But the thing about it is...do you know how special that is? Do you know how much we appreciate you? I don't know what you look like or how to play Minecraft but he shows me sometimes. He asked for your firetruck video the other day and explained as best he could along with you.

Tristan wants to be a firefighter. He doesn't know that he was born prematurely (at 30 weeks) and lived in NICU for two months. Our house had burned down and my body couldn't hold up to the stress (my cats were lost along with everything we owned). Maybe some part of him knows, though, because during his rounds in a firefighter costume he told me "reshoo people an cats."

I think you also make a cake in that video which is his favorite food other than pizza.

My husband plays games with him. I've let that be their thing together. I'm more of a Limbo-girl anyway. I had seen Minecraft things at ComicCon in the past never thinking it would become such an intricate piece to unlocking my son's thoughts. How could I especially because I don't think it's the game alone - it's equal (if not more) the life you have given to it.

The voice.

I don't know anything else about you; what you look like, what got you into making videos, or what your favorite food is, but I do know you change lives. Maybe that's something you didn't know. You are loved by many that's for sure (hello meme/fanart!)...but this is deeper. You've reached a place in my son's brain that most things and people can't get to.

We thank you for that...with all of our hearts.

Tristan is at school right now but he'll be home in a bit, asking for Stampy and showing us how creepers and zombies walk. That's really funny to watch him mimic but you can't laugh because Stampylonghead is to be taken seriously.

Kindly,
Stephanie and Brandon


09 September 2014

Zombies Not Dead: The First Morning


I'm binge eating crackers and drinking diet cola in hopes of quelling the migraine spreading across the right side of my face. You've been in school for 53 minutes now and gone from me even longer. We sat on the front steps waiting for the bus to come at 12:03. It was a couple minutes late but we didn't mind.

You had your worst nightmare ever some time after I got up. I was having my coffee and figuring how long I should let you sleep when you came out hysterically crying telling me that "zombies are dead." I said, "that's true, they are." I'm still not sure if you realized they were living dead or if one had re-died...you couldn't tell me...but I got us both ready with one arm with your arms flung around my neck hysterical over the zombies.

Last night you ate a whole cheese pizza minus two slices. One for me, and one for you that I hid in your lunch box just in case you don't like the food they serve today, though I hope seeing other kids eat different things will encourage you to try as well. It was really hard hiding that slice. Papa and I didn't know how hungry you were after your busy day at OT at CHOP.

"Big big big bigger pizza!"

"I sad. Papa not feed me. Pizza bigger pizza!," you wailed until well after 2 a.m.

Honey, I promised we'd order a large next time. Who knew a little one could eat so much pizza - but it's just as likely that you won't want any next time.

You're tricky like that.

You have your dinosaur backpack from Grandma'bama. I hope I packed it well. You chose to wear a raptor shirt from Gramma--that will make her happy. Underneath it you wore your dog-in-a-tie shirt because that is your favorite.

Your shorts are new but that's one of the many special things about you - you find comfort in the familiar.

I took a few photos but they were just candid selfies. Real moments. When you're older most of the kids you know will have photos of themselves holding a chalkboard with a number. That's very trendy right now. I don't have a chalkboard but maybe on a day you're feeling better we can come up with something quirky.

The bus pulled up and we did it quick like a band-aid. When I was a teacher I always thought that was best to start out. It's harder when the shoe is on the other foot but I still wanted to give you over to your own independent routine.

This past week I have pondered nature versus nurture a lot...when you come home it will be the first time you've done something completely on your own with other children. What will you pick up? What will you share with others? There are so many new things entering your personal space now.

We'd planned to homeschool - and maybe that's still part of the future - but right now Papa and I are happy that you'll be in a school with other children similar to you, with teachers and therapists trained to work with special needs.

You're our brave boy - from the moment you fought to stay in me for another month after the fire until you came out fighting against my contractions. We know you'll keep surprising us - how? That's the mystery yet to unravel.

Love,
Mama

P.S. I have been bracing myself for you to start calling me Mommy and warned Papa he might become Daddy since that is what most children call their parents and the terms teachers use. It's a particularly hard thought since you just started saying our names consistently over the last few months...but I've treasured each time and tucked them away in my heart to save forever.

"I lub you, too, Mama."
I love you, too, Buggie.

31 August 2014

Friendship and Addiction



It's interesting where you can find answers to unspoken questions. Buffy and Oz both spoke to me last night. Not the characters, the shows: Buffy the Vampire Slayer and Oz, that prison show about Emerald City; Augustus spouting off in his spinning wheelchair. ...not Seth Green's Oz, though he has some great lines.

I lost a lot of online friends recently when I left Preemie Pen Pals, a group I've written about on here. I founded it exactly three years ago on 25 August, according to Google and open internet boards. That's probably why it's been on my mind even more over the last few days. Each year I'd post a Happy Anniversary and we'd all reminisce about how far our preemies have come - as well as us.

We talked about being friends forever and growing old together. I believed it. However behind the scenes I had a conflict and rather than calling this person/s out I decided to move on. Was that the right choice? That's the thing about life - there is no right choice. If you've ever seen the indie movie Sliding Doors, I often compare it to that. You have to make choices and live with the consequences and wonder what would have happened if you had moved a little faster that morning and caught the train instead of missing it?

It's like moving. Something I've done too much of. It was a method I picked up in my teens and carried on until settling down in Philadelphia six years ago. I don't know if this will be our forever home, but I know we won't be running away from something if we move - we'll be running to something. Reasons.

When I first moved it was in high school. I was 14 and had lived in the same house for as long as I could remember, watching the sunset behind the palm trees from the hilltop never considering it could change. I was happy in that world with the lemon tree out my window delivering enough lumpy fruit to leave me not wanting lemons. Violets under my feet. Hummingbirds in the trees.

I'd known the same faces since preschool even if we weren't friends anymore...we were still acquaintances. I drifted from group to group but in junior high found a core group of friends that I'm still in touch with today even if it's brief interactions and glances online.

Friends change...rearrange.

What keeps a friendship together and how do you know a real friendship from an acquaintance? Does it matter? ...how can you recognize the overlap between the two? I always found out who my real friends were by moving. They were the people that circumstances didn't dictate. But as humans we find comfort in relating to others if even in the moment...and that's what I've been pondering lately: why was I upset to lose friends who were merely acquaintances/time-period pals/circumstantial buddies? Why did it hurt so badly to make a choice that was truest to myself?

Then last night as I was working and listening to Buffy, just like every night, I picked up on a conversation between Willow and this wretched guy sweet Buffy hooks up with in college thinking it was something it wasn't (because all she'd known was sincerity and love in Angel). But, in part of his explanation to Willow, I thought, that's it! That is the answer!

Some relationships center on a deep emotional tie or…a loyal friendship or something.
(beat)  
But most are just two people passing through life, enriching or aggravating each other’s lives briefly.

So that explains that. I got a lot from them, they probably got something from me...and whatever, it's done. I shouldn't care about the girl who I first met in real life, the one who works in the same city. If I run into her I don't have to acknowledge her because I don't know her anymore. She became nothing. For a while she stayed at home with her son and we hung out and what I'm saying doesn't negate those fun times. She went back to work and it literally took her almost a year to respond to a text message. I'm not sure how that happened but it bugged me. Sometimes you'll miss something, but for a year? Why, then, was I so hurt when she decided not to listen to my side of the story? She found the time to send me a rude text and then radio silence.

Let's turn to prison for the answer to that one, readers. Because life, and life in prison, have more similarities than we might think. The group had become a prison. Be this and do that or step down or do more time...this clique that clique this person leaks information to another and this one likes to take screen shots and another will be nice to your face. Being a moderator is like being a warden. You know what's up and watch for signs that it's getting out of hand. I set up an island, an Alcatraz, a bomb shelter. I'm not one to conform so I knew shrapnel would fly and I'd need to swim.

If you were stranded on an island what would you bring? I've always said lip balm and I stand by that answer. I certainly wouldn't take people who seemed happy and content on the mainland. Prison isn't always bad and I don't mean to compare it to just that. We'd jokingly referred to it as a sorority with hazing, secrets, and bylaws. It's a club; a "group."

Building an island wasn't meant as malicious. I was actually at my most selfish and just wanted to keep my own head above water. Not cry over the internet in front of my husband and son or in privacy; I didn't want to cry anymore and have migraines. If you cry over the internet it's time to sit in the corner. Step away.

But let's not leave Augustus Hill swinging in his wheelchair any longer. Let's bring him into the room to join the mean-to-Buffy boy and expand on life's idiosyncrasies and figure out why ultimately I cared.

You take a drug, right. The chemicals, they rush through your body, rush through your brain. And the sensations, you want the sensations again and again and again. But let me tell you, you can also get addicted to grief, to guilt, to hate. Cause, when you feel dead inside, even bad sensations make you feel like you're alive.

Oh, Augustus. Your writer was so wise...it might not be drugs. It might be emotional codependency, the need to be right, selfishness, greed, pride, higher education or getting the last word. You don't have to be totally dead inside, I don't think that's what he means. We all have holes (personality flaws) that feed off of whatever that addiction is.

Often women become addicted to the need to share all their thoughts with others. We just want someone to listen and nod - sometimes even tell us we're right, even if we aren't. It's another dead hole that needs to be fed. The internet gives a false sense of comfort, like shouting into a canyon to hear an echo. You can't see who's out there but get a response saying exactly what you want to hear. ...a pong to your ping.

That doesn't mean that real, valid, deep forever friendships won't form, it's just easier to forget the ones you don't connect with and say much to. It's easier to depersonalize. Like when I called someone who was sending me PM's. "We don't talk on the phone," was her response to me. So let me get this straight - online, we share our entire life, we've met in real life, but if I pick up the phone to say what I think, that is crossing a line? That's fine. Poof. You were never real...but for the record you're addicted to always being right.

When someone tells you you're a certain way enough times - or you hear it from enough people chances are they're seeing something you aren't. Investigate that information.

Sometimes they're hiding in plain sight. You know how they say your biggest strengths are often your worst flaws? I'm kind, but I'm also selfish. I'm patient, but I can be cold and mean. I have hurt people I care about and I hate that most of all.

I have an addiction to guilt. I feel badly over both over things that were my fault or weren't at all...I'll feel wretched over it all. This goes for things I've done in the past, present, or have yet to do. This goes for stories I hear on the news about people I will never know. It goes for testing on animals and eating meat. I hate that I hurt good people by a choice I made or their own misunderstanding of my reasons.

Guilt is my biggest addiction...

and writing is my confession booth.

What's yours?