Wednesday, December 12, 2012

A life of fortune.

If you remember, February 10th, 2011 I wrote about a fortune cookie that I had opened two years prior. If you don't remember, stop reading this and go read it here. Then, come back and read this one. Because they kind of go together. Like canned meat and a garbage can. 

Welcome back!

So, that fortune still adorns our fridge. It's still crudely taped and it even gets covered up sometimes. But, it will always be there as a reminder for us. A little fortune of hope. Sometimes when I see it, I remember how happy it's made me and how happy it continues to make me. Even if that's all that little fortune does, isn't that enough? In this crazy world, isn't a millisecond of happiness enough? I think it is. Which is why I've decided to keep it forever. I mean, I've already decided that long ago, but you have no way of knowing that. Unless you already knew that, in which you already know and there is no reason to discuss it anymore. Know what I mean?

Anyway, the reason I've scanned the archives looking for that old post is because I want to add to it. I want to add another fortune! We're very lucky with our fortunes. For me, I don't care if I get one that says I'll get a lot of money, because those ones are fibbing. Trust me on this. You're never going to get a lot of money. Those are fibbing fortunes, pay them no mind! I prefer the fortunes that are a little more philosophical in their predictions. Keep it nice and general so it can apply to nearly anybody and any situation. Those are the ones that I like. Let's go to Chinatown.

On Monday my dad, Roman and myself went to our new hospital. Hershey Medical Center. We met with Roman's new Urologist and discussed some pretty heavy topics. Topics that have weighed very heavy on my shoulders for a very long time. We started a new medicine. A new medicine that I wanted to avoid for as long as we both shall live. Not because I'm against the medicine, I have no major qualms with it. But, because I weirdly liked it when asked, "What medications is your son on?" I could say, "NOT A SINGLE ONE, THANKYOUVERYMUCH!" and then do a little Irish Jig in the office and make a "neener neener neener" face at the nurse. Because I assume that's what adults do. But, now I've got to face the facts; my kid needs medicine. Big boy medicine.

So, while my dad did his best to make our trip fun I still had that familiar weight on my shoulders. I would describe it as somewhere between a stiff neck and when your bra straps are so tight they leave big indents in your shoulders. Whichever one you can relate to, it's kind of like that but also sprinkled in a generous coating of the ever present mommy-guilt. Think, "What did I do so wrong that my kid has to take big boy medicine?" In an effort to lift my spirits and because Roman is a noodle-maniac my dad took us to a Hibachi restaurant. The sushi was not the best I've ever had, and the sesame rolls were filled with, um, well. I just don't know. We ate and Roman got noodles, pizza AND Jell-o. Basically the best culinary combination known to man. When the meal was over the waitress brought our check, some mints and as Chinese Restaurant law dictates; 3 fortune cookies. I opened mine. It said that my heart is my greatest asset. I thought it was my hyena-like cackle that almost always ends in a snort. But, okay. Heart it is. My dad said, "I don't believe in those things" and left his on the table. I handed Roman's cookie to him and explained the process. He broke it open and was mortified to see that somebody had ruined a perfectly good bland cookie by putting a wrinkled piece of scrap paper inside. The nerve!!
So, I explained, "Roman, it's your fortune. let's read it!" I was hoping that it was kid-appropriate and would maybe even be a little funny. Like, "You're still hungry" or "Legos are fun to step on-said no mom ever" But when I flipped it over and read it aloud I had that same feeling that I had when I opened ours 3 years ago. This was meant for him. Roman's first fortune cookie fortune now sits proudly alongside our old one. While many people have their faith to hold onto, we just have our fortune cookie fortunes. I think no matter your source of hope, cherish it.


**In the interest of tradition, I went ahead and snapped this at a goofy camera angle, too. Some might question if this is simply a picture that I posted and had no way of rotating or if I really did have the foresight to remember that I took a funny angled picture in the first blog and kept the theme in the second. Why now, you know a magician never reveals her tricks. It's trendy. Just go with it!

Thank you fortune cookie makers.

Lucky Numbers: 12, 20, 26, 15, 10, 54

(If you happen to win anything using one or all of these numbers there is a small usage fee. 50% of all winnings go to me, to be used in reconstructive foot care as a result of too many middle of the night lego toy foot damage) 

Friday, October 12, 2012

A little more of your time.

When I was young, we had very few fundraisers. The fundraisers that we did have were always SUPER fun for the kid and rarely, if ever, fun for the parent. Now, maybe your parents and mine did things differently, but as I remember it; my parents did the bulk of the work. My biggest role in the fundraising process was to knock, smile like a twerp and pretend to understand the corny jokes being spat at me. "Heyulk! You don't have a pen? That's not a very good business-girl " Well, have you ever tried to scale the neighborhood with a folder, a pencil and a growing competitive hunger for the prize on level II? Yeah, I'm guessing not, so order the cherry cordials and let me get to the next house!

It was a thrilling time to be a kid with a mission. The adults too, seemed to be unburdened by our rare visits, and our simple pleads of patronage. But, times are no longer so simple, or thrilling. Now, it's as if there is a fundjacker waiting around every corner. The days of, "Yeah, I'll take it to work and leave it in the break room" are gone. Now when your kid comes home and you see the tell-tale signs of a fundraiser your mind starts to race. "CRAP! WHY ME?! WHAT HAVE I DONE TO DESERVE THIS!?"
Now, I am on both sides of the line here. Not only do I participate in a LOT of fundraising events. I'm usually in the market price range of your average bake sale, lollipop and raffle ticket bracket. But I'm also a repeat money-raiser. Yes, I giveth while I taketh.
So, please friends if the two paragraph hook and introduction simply weren't enough for you allow me to cut to the point.

I. Want. Your. Money. 


I know I tend to get wordy and heck, maybe even a little dramatic when I write about things that I am passionate about. That creates a problem for me already, because I have a ton to say and it's so important that you guys take the time, however many days it may be, to read this in its entirety.

I have this friend that I met a while back. Over the years we exchanged small talk, offered advice, support and commented on the incredible cuteness of our kids. She lives on the West coast and I'm obviously on the East. She's married to this really exotic looking guy who wears hipster glasses and I'm married to a polish guy whose beard gives me butterflies. She has FIVE sons with names like, "Kumaka" and I just have a dinky tribe of 3 with names like, "Isabelle" Don't quote me on this but I think Kumaka means, "The mightiest volcano in the mountains of Volcanicsburg!...with a sword!" (Everything is cooler with a sword.) And Isabelle's name is spanish meaning, "Katherine Hiegl's character on Grey's Anatomy..with a scalpel!" (See? Not as cool.)
Aside from sharing a mutual love for blogging, we are as happily opposite as two pair can be! In fact, there is probably no reason for our paths to ever cross. Except they did, because of one common denominator. Spina Bifida.
Tracy has five boys, her youngest, the previously mentioned Kumaka has Spina Bifida and as you know my middle, Roman has Spina Bifida. So while connected and fused together in our bustling Spina Bifida community I learned something new about Tracy. She wants a daughter! But not only does she want a daughter, she wants to ADOPT a daughter! And not only does she want to adopt a daughter, she wants to adopt a daughter with Spina Bifida.
This is Tracy's story, and it's going to be marked, I'm sure, with highs and lows and happiness and frustration. Even with the bad she'll get the good and it's the good that she'll want to share and tell, because it's her story. I'm just here to let you know that it exists.

Can you imagine the happiness in the moment when Tracy's family was matched with a baby in Eastern Europe? This family is preparing for battle in the biggest contradiction on earth; the battle for love. Tracy is ready to tackle the paperwork, conquer the government requirements and sucker punch the paperwork. She's ready to wrestle with phone calls, e-mails, signatures, clearances, paperwork and all of the labors of love involved in international adoption. In a word, paperwork.

Sofi needs to be with this family.
Not just because they need help adjusting the boy/girl ratio, even though they totally do. And not just because Tracy is an SB expert and would be the perfect mommy to Sofi. Not even just because they are an absolutely gorgeous family with gobs of love oozing from their perfect hair. Sofi needs to be with this family because they were made for her, and she was made for them. Because her future without them is bleak, at best. It's forgotten, ignored, overlooked. It's lacking in essential medical care, supervision and quality. It's lacking in touch, stimulation, conversation and growth. It's lacking in love. Sofi needs to be with this family, it's quite literally a matter of life or death.

In most cultures, being disabled means being dispensable. In a lot of cultures being disabled is very much like being a living ghost. For Sofi, she probably has no idea how loved she truly is, how wanted, prayed for, wished for, hoped for. Think for a moment how despairing it must feel to love your child, but not be able to tell her. They want affection, but you can't hold their hand when they reach for you. You know they are crying, under the same sky as you, and you can't dry their tears. They're sick, and you can't heal them. Scared and you can't comfort them. Alone and you can't sit with them.

I believe Tracy and I were brought together for far more than just commending each other on having adorable kids. More than I want Tracy to know the joys of having a daughter, I want Sofi to know the joys of having a mommy.
So, if you've ever wanted your mommy, cried for your mommy or needed a hug from your mommy. If she's here or in your heart, down the road or across an ocean. If your mommy ever kissed a boo-boo, played hide and seek, and made you drink your milk. If you think Sofi deserves to have those same things and the love and protection of 5 big brothers and a dad with rectangle glasses, her own room, her own toys, warmth, protection and bundles of love-Help her.

Please, go to Tracy's page and donate. Give what you can and don't be embarrassed to only donate 3 or 4 or 5 dollars. Don't think, "Oh, what's four measly dollars going to do?" A few dollars can do more than you think.  It can save a life, it can complete a family. A few dollars can mean a second chance.

I know I've asked you for a lot. I know I've begged and bothered and pleaded and cried for money for the Spina Bifida Association. And here I am, begging again. But I'm passionate about my cause, I'm heartbroken for this child and I need to rally for her and her hopeful mother. Go to her page, read her story and donate a couple of dollars to help her come home. Please. Please.

Click here to help sweet little Sofi
(This will open in a new window and is 110% safe. Which is like, really safe.) 

Thank you for letting me beg for money from you guys again. I promise that this will be the last time that I beg for money until the next time that I need to beg for money.

Thank you Tracy for letting me share your story. Thank you for letting me cry for you, and hope for you, and wish on stars for you.
Sweet Sofi, you have a lot of people trying to get you home. We're doing our best for you. Hang in there, doll.

-Your friend,

Monday, October 1, 2012

Spina Bifida Awareness

October First.
October is a very special time of year, for pretty much everybody. I mean seriously, can you think of a single person who doesn't like October? "Oh, the start of all of those family rich bonding events?" "Aw gross, colorful leaves wistfully falling and painting the earth with their majestic beauty, no thank you!" "Oh, you have got to be kidding me! Look at all of these pumpkins bringing back joyful memories from my happiest moments in childhood! How horrible!"
Okay, you get it. October is very special to a lot of people for a lot of different reasons. For me, my list of why October is awesome just keeps growing. Since having Roman my list has grown to include Spina Bifida Awareness month.
Now, October is probably home to more causes to be aware of than any other month. But, I think it's important to be the voice for your cause, no matter the competition. So if I may, I would like to take this time to do what I do best; be the voice for mine!
In order to properly advocate for my cause I need to do one major thing: Make you aware! It's awareness month, remember? But this is tricky, because I want to make you aware without sounding repetitive. I mean, how long have I been harping on about Spina Bifida? It would seem that eventually the conversation would run dry and I would finally say, "So uhh what's new in your life?" And also, I need to not be boring. I know the facts, I've heard them from the start. I can quote the percentages, the dates and the demographics. I can easily tell you the sad stories and the happy ones. But, that's boring, and it's easy to find via the internet. I don't want this blog to stand as a carbon copy of percentages from other websites. I want this to be more. I want this to allow you to feel the hurt, sadness, loneliness and all of those other crappy feelings. Because after that you're going to feel the joy, the happiness, the pride and the other various feel good emotions. You can't have one without the other, that's not allowed. If you want the good, you have to at least try to feel the junk.


Every single time a friend or family member announces that they're pregnant, or announces that they would like to be pregnant, I chime in with my rant on folic acid. You know the rant. Folic Acid is not a signed promise that your baby will be born with a perfectly normal spine. But, taking Folic Acid is a good way to help prevent it. Wearing a seat belt doesn't promise that you will be totally unharmed in the event of an accident. But you wear it anyway, because hey, better safe than sorry.
Usually in these efforts I come off sounding like a Munchhausen mother or a really hip sympathy hog. I'm not searching for your "awws" and I'm not looking for you to rub my shoulder and give me a big, hearty hug. I mean, you can give me a hug, I'm not opposed to hugging. I quite like hugs actually. Anyway, If I come across as a fear monger or as a drama queen it's mostly because...well, I kind of am.
Spina Bifida is scary as hell! If I knew that I should have been afraid of it BEFORE I got pregnant I would have done so many things different. Or nothing, who knows. I'm not magic.
The point is, Spina Bifida usually happens before a woman even knows she is pregnant. This is why it is CRUCIAL for me and the people in my SB community to be fear mongers. It might not, and probably never will and it's very doubtful that it could ever happen to you. But, better safe than sorry, right?

In the interest of awareness, it's not my job to sugar coat it. It's my choice if I want to say, "Oh, we have our days. But all is super, thanks for asking!" or "Well, I'm not sure if we're dealing with just typical three year old angst or if I need to employ the services of a well trained psychologist." But Spina Bifida can really suck, so a lot of times, we sugar coat it.
Sometimes our kids can't pee. Sometimes they have severe kidney reflux. Sometimes they can't hold their poop. Sometimes their brain is forcing its way into their spinal column. Sometimes they cant walk, sometimes they can't eat, sometimes they can't breathe, sometimes they need surgery and then surgery and then surgery. Sometimes. They. Need. Surgery! Brain surgery, neck surgery, back surgery, leg surgery, hip surgery, bladder surgery and eye surgery. Sometimes they need braces, catheters, trachs, walkers, wheelchairs, breathing tubes, arm crutches, casts, canes and right sided ventriculoperitoneal shunts. Okay, yes I am tugging at your fear bone here. Some of these are more typical than others and some are just downright rare. But, if one person reads this and says, "WOW! I wasn't aware that Spina Bifida wreaked so much havoc!" Then POOF! My face will appear in the clouds giving a giant thumbs up and then another set of clouds will swoosh by and they will kind of look like they say, "Mission: Accomplished!"

That's the bad. You had to have it.
In the interest of awareness, it's my job to deliver a little taste of inspiration. When I see Roman terrorizing the aisles of Wal-Mart, that's not inspiring. That's a three year old disobeying his mother in the store, he just so happens to be in a wheelchair. He's not doing anything that he wouldn't be doing if he didn't have the chair. With or without Spina Bifida that kid would be hauling butt down the aisle with me shuffling after saying, "Roman! Knock it off! That's IT! I'm counting to THREE! Onnnneee.....Roman!....Roman!!....TWOOOOOOO....ROMAN. ABLE. POTTER!! DO NOT MAKE ME SAY THREE!!"
That's not to say he doesn't make my heart swell to unhealthy sizes. He does. All my kids do.
When Roman is feeling tired at PT and wants to stop messing around with his legs and just play, he knows he has two choices. He can throw a huge fit and beg to stop. He can say he's too tired and doesn't want to take one more step. And he has, he has asked that we stop because he simply can't continue any more. But there are even more days where he'll throw his fit, make a fuss and ask to stop. But, the inspiring part is when his PT says, "Roman, finish this and then we can rest." or, "Roman, take 12 more steps and then we can play." And instead of throwing a fit he pushes on. Even though his cheeks are red, even though he's got sweat running down the side of his face,  even though he's exhausted, even though he's worked his ass off. He finishes the job. To witness a three year old do that? That's inspiring.

I didn't ask to be one of the thousands of moms who are a voice for this cause. None of us did! If given the choice I would have been a voice to the "moms who have too many gold bars to carry all at once" cause or the "moms who can't wear mom jeans because their butts are just too plump and well sculpted" cause. You know, the important ones.
But, I am one of the voices, and most days I'm okay with it. Some days I want to cry and scream and change not my life, but Roman's. Some days, I want to find a religion that will let me spend the rest of my life just begging for a second chance. To make it go away. To find a "cure" for Roman's Spina Bifida. Sometimes I feel very, very, very sorry for myself. But when I feel like junk, I remember that I'm one of the voices and Roman is one of the faces. And we have a job to do. So, I hope that in reading this you felt sad but it ended on a happy note, because Spina Bifida REALLY does suck. But it's not a tragedy, it's not devastation. Yes, it's a life changer but it's not a life ender. Use our story to scare your friends, your family, yourself.
Don't be obsessed, and don't let it change your mind, and don't let it consume your pregnancy, and don't let it keep you up at night. Just take that little concern and put it in your pocket, or a fold of fat, or in your armpit, I don't care. Let it peek out for 5 seconds when you're thinking about starting a family, let it peek out when you're talking to a friend. That's really all that awareness is. A little concern that you share when it needs to be shared and then you tuck it away. Don't throw it away, just tuck it away.

Now, the great thing about Spina Bifida Month is that you'll get to read and see and hear from a lot of other SB moms, which is great because this isn't THE truth, it's just MY truth. I usually tend to err on the bitter and cynical side, so it's perfectly okay to disagree with me or even think that I'm a bit of a jerk. But just wear your seat belt.

Tuesday, September 25, 2012

The great wheelchair prank!

Hello friends! I know it's been way too long since I have blogged. There have been so many occasions where I've said, "Okay, I am DEFINITELY blogging about this!" And I really do mean to. BUT, life happens and before I know it the events are fuzzy or too much time has passed and the subject is no longer relevant. However, we're both in luck! Because this is still fresh in my memory and I laughed way too hard to ever forget it. My son pulled his first prank. His first wheelchair prank.

Roman, Isabelle and I were wandering loudly through the aisles of Wal-Mart. We only needed a few things to prepare for Mr. Potter's birthday and I wanted them to help with the process. I thought it was an absolutely wonderful idea and thought to myself, "They're big enough now, I can allow them back in Wal-Mart." First of all, no. They were monsters! Wal-Mart does something to my children. It turns them into wild animals. Izzy promptly grabbed Roman's wheelchair and started to push him in wide zig-zags. She crashed him into displays, carts, toes, people, soup cans, walls, and racks of women's lingerie. I must have apologized to a million people just in the bread isle alone.
Finally, under the threat that, "I will cancel Daddy's birthday and nobody will get cake!" They settled down long enough to get a few of the things we went in for. But of course, I was so frazzled I still forgot most of the food items that I needed.

Now, let me paint the picture for you.

If you've never walked into any kind of public establishment with a little boy in a wheelchair, you're missing out. I've been a "people watcher" for as long as I could talk about them. And when we're out and about and Roman is using one of his various modes of transportation we quickly become...the watched.
Now, being "The watched" is not THAT bad, honestly. Usually people are polite and make room, hold doors and sometimes let us cut in line. Sometimes they just smile and look away while other times they give a concerned look of, "Wow, he must be made of glass."
It was that very type of watcher that we met on our recent trip to Wal-Mart. It was one of those awkward situations where you and a stranger are shopping all the same aisles together. This ensures that you will have to give the obligatory, "heh...heh...hi." over and over and over again. And of course one of you will say, "I'm not following you, I promise!" In our case, we had seen this sweet lady in several other aisles. Each aisle, we were met with the same sad eyes and that weird mouth thing people do when they want to say, "bummer" or "tough break".
In one of the aisles, I was painfully forced to look over the various products and make a decision. I hate these aisles. Loath them entirely. Any situation in which I have to research prices, ingredients, fluid ounces, container shape, container color, product smell, touch, font, and curb appeal. I HATE IT! You know what my favorite thing to buy at Wal-mart is? MILK.
Oh look, a blue cap. You win, welcome to our home.

But, I digress. I'm feverishly trying to scan the shelves for the item needed to fulfill my quest. Aside from being an annoying task, it's also a literal pain in the neck. Shelf-kids-shelf-kids-shelf-kids. I take my eyes off of the children and back to the shelves once more and within moments I hear the CLACK CLACK CLACK of old lady pumps barreling down the aisle. "Um, mam.." She says to me and "Oh, Honey??" She says to Roman.
I'm incredibly confused. I abandon my mission and focus solely on the lady, the clacking and Roman.
I instantly realize her concern, and without painting a picture or drawing a crude stick figure it might be hard to describe what this poor woman had witnessed. But you know, I sure am going to try.

So, while I was scanning, Roman and Izzy apparently became very bored. To show their boredom they were pretending to be asleep and make very obnoxious snoring sounds. (I get the hint, kids!)
Well, Roman is no mediocre actor. Psh, did Tom Hanks win an Oscar by simply snoring? NO! He talked to a volleyball! Go big or go home!
Roman, a true thespian at heart, had gone completely limp. His chest was slumped down resting on his lap, his arms dangled freely, totally void of any motion...or signs of life.
And, as if the director was seated high above him calling, "action!" His wheelchair had started to slowly roll away from me and towards a mostly-glass contained shelf.
"MAM!" and "Honey?!" She clacked some more, but Roman remained still. "Are you okay, Honey?!" By this time she had long ditched her cart and was in full trot towards Roman.
I guess I must have looked like a pretty uncaring or at least unconcerned mother. I stood there, almost as if I were watching it unfold in slow motion. Finally, I look at Roman's face, still laying motionless on his lap and he's wearing the biggest smile I have ever seen.
"Um, he's fine." I finally muster. "He's just...umm...I think he's just played his first prank." Upon seeing my face go from confused to incredibly amused, the woman grabbed at her heart, tucked it back into her chest and clacked back to her cart.
My son played his first wheelchair prank! I couldn't be any more proud of him! Sure, I wish he would have started small and worked his way up. I mean, what mother sits back and says, "Man, I wish my son would trick an old lady into thinking that he has died."
But the sinister prankster in me can't help but want to high five him and say, "Holy crap! I can't believe she bought it!"

Now, of course I did the responsible thing and apologized to the woman for scaring her so terribly. I remember once while shopping a young mother couldn't find her child. The kiddo was apparently just hiding in a clothing rack and giggled with major delight to see the store on total lock-down and looking for her. I thought that little kid should have personally apologized to every mother in the store, because she had aged us all about 5 years.
But this was different, because it was my kid and it was hilarious! 

Saturday, July 7, 2012

The truth about Indianapolis

So, about this time last week I was tossing and turning in an over-sized hotel bed. Granted it was a very comfy and heavily pillowed hotel bed, but it wasn't MY bed. But I laid there, exhausted from smiling and being giddy.Worn out from the day's information-packed sessions, and drained from the overall separation anxiety that comes with being hundreds of miles away from your family. But before I finally slipped into a deep hotel coma the most encouraging thoughts filled my head and allowed me to fall asleep with a smile on my face; Every night that I was there.

-I flew above the clouds. I flew at 21,000 feet in the air. I lived.

-I met the very first person I ever talked to about Spina Bifida; about Roman. She answered my questions, eased my fears and has been a stronghold in the Spina Bifida community and to me.  My little freckle faced friend Colleen. 

-I learned what it meant to "check your baggage" and then I did it. 

-I said I was going to the conference and I actually did it. I paid my registration, booked my flight, and fell with a thump on my hotel bed. I actually did something that I said I was going to. I DID SOMETHING I SAID I WAS GOING TO DO!! 

- I spoke in front of A LOT of people. And I did okay. And I didn't cry.

- I attended a medical conference..and I didn't get bored!

- I cried in front of a lot of adults and about 9 teenagers at a medical conference. 

-I met Kemper and Beth. And we had the best time, the silliest laughs and we truly wrecked room 1217. I mean that place was gross. 

-I met Roman's future Mother-in-law. Mrs. Gilliland!! :)

 Every morning that I woke up, I did it with a smile. "I'm really here!" I'd think.  I'm with my people The people I feel comfortable with, the kids and adults whose wheelchairs don't phase me, whose AFO's don't bewilder me, the people who have too much brain to contain. The people with the badges over their SB shirts, the kids with wheels that light up, the people with service dogs, the people who take the elevator, not the stairs.  The people with the tricked out walkers, and the canes and the smiles as big as mine; because they feel it too. My people.

I could gob on forever about who I met, what we did, what I learned, what sessions I attended, how much one crab cake cost, all of the little tid-bits of information. But I won't. Because if you were there, you already know and if you weren't there, you might not want to know. 

Besides, I don't want to share my stories or my giggles and tell you where I ate or how horrible the house keepers were or reckless the cabbies were.

I want to tell you about my experience. The truth about Indianapolis. 

Since having Roman I've been utterly and hopelessly alone. Attached to my computer because, well, that's where my moms are. My SB peeps live in here, so this is where I like to frequent. We don't just wallow around and curse Spina Bifida. We praise our kids, we beam with admiration at their siblings as well as fold up with guilt, We count our lucky stars for our husbands, moms, sisters, best friends, we talk about real life issues, we talk about genuine fears, we brag about renal ultrasound results and uneventful clinic days. When one of our kids start puking in the middle of the night, we're all there. My SB moms are just a glowing light away from reminding me that I'm not really alone, but that I kind of am.

So to meet them?
How can I put into words how amazing that felt? 
How can I tell you that for 3 years they've been living at the end of an "ENTER" key, but in a different state. That they were one "SEND" button away, but a 10 hour drive? That I cried and worried for them just as they have for me during difficult times. Hospital stays, depressed days, "I can't believe somebody said that to me" days and "What should I do?" days. How can I do justice to my feelings when the only true way to express myself isn't in words, but in laughter?
For the first time since Roman was born, I didn't feel alone. I got answers, I made even more friends and I felt like I belonged. And that can't be taught in any session, it can only be felt. And it felt amazing. I can't wait for next year, and the year after that, and the year after that.

The truth about Indianapolis has nothing to do with it being in Indianapolis, it has everything to do with who I was there with. My People.

Tuesday, May 29, 2012

The Ronald McDonald House

I've tried several times to describe our experiences with the Ronald McDonald House. In my first draft I detailed the events that led to us being there. In my second draft I detailed "house life" once we were already there. This is my third attempt in describing the Ronald McDonald House and I simply could not understand why it was so hard to write about. After taking a minute to think and put myself back there I realize now that I was trying to write about the RMH as a place or an experience, it was so much more than that. The Ronald McDonald House wasn't just a safe place to sleep; it was a whole new emotion to conquer.
The doctor was happy to discharge me from the hospital, and I suspect that he thought I would share in his happiness. He was quite wrong. I woke up that morning filled with dread and hurt and wished with every fiber of my being that something would go wrong. That I would fall, that I would hemorrhage, that I would get an infection. Anything to keep the doctor from discharging me. 
Being discharged meant that I would have to leave the hospital empty handed. No baby, no car seat, no diaper bag. Nothing. Jason and I walked out just as we had walked in. We were scared and we didn't know what each future minute held for us. If Roman needed something, how would we know? Would we get there in time? If we tried to enter after 9PM we needed special clearance, we needed wristbands and we needed to show our I.D's. 
Before we left the safe confines of our hospital room we had a visit from a nurse or social worker or hospital aide, heck, it could have been a stranger off the street, who knows. She handed us a brochure for "The Ronnie House" and told Jason to make plans as quick as he could so we could stay there. She pointed behind her, "It's just over there, most moms walk over." she said. I was reserved in my happiness. She said that often they fill up, because so many people have to travel so far to use the hospital.
I waited at Roman's side while Jason went to make the arrangements. I thought about what I would do, where I would stay and how I would cope if we didn't get a room. Driving 2.5 hours back and forth wasn't an option. There is no way I could be that far away from my little broken baby. I cried next to him, feeling pathetic, alone and scared. I wished that I could just stay there next to him until our time in the NICU was complete and I could take him home. 

Moving in day was horrible. The staff there didn't pretend that we were on vacation, and I'm thankful for it. They were all business and knew we were there because we needed to be, not because we wanted to be. They explained the rules, the expectations, the perks, the facilities, and made us feel at home. In no time at all we found our routine. Wake up-see Roman-lunch break-see Roman-dinner break-see Roman, walk home at midnight and rest for the next day. We did this every day all while pumping every two hours.
Isabelle was staying with my parents. We hadn't seen her in days and when we would call her it would only upset her. Jason left to be with her. We didn't want her to feel totally shafted and ignored. But, that situation didn't work out for big ole terrified me. So we made a new plan. Izzy and Jason would come stay with me at the Ronnie House. The staff was wonderful, they brought up a cot for Izzy and she had a ball playing on the outside equipment as well as the gigantic toy room. I slept better and smiled more knowing that my little family was together under the same zip code. 

The Ronnie House Days are dark. They're sad, they're grim and I shed a lot of tears inside that building. But without the Ronnie House, those days would be unthinkably long, the distance would torture me and the guilt would consume me. I owe them so much more than a dinner.

When a few friends and I got the idea to do something charitable and nice for somebody else, it was a no brainer for me. We'll cook dinner for the family's staying at the Ronald Mcdonald House! I remember a few church organizations and once or twice a former house guest coming in and making us all dinner. I was excited to pay it forward, but I was nervous. What if I walked in and the combined smell of 40 people living under the same roof punched me in the nose with nostalgia and I started crying in front of everybody? I was excited and I was nervous. Luckily, I had a great team on my side. 
My best friend Bridget and her oldest son Camden joined Isabelle and me! First we stopped and bought the goodies at a local store. Bridget and I agreed that the local Weis that they have is six times better than our Weis and 99% better than Wal-mart. We had a very limited time to shop, mostly because we kept getting lost and and saying things like, "Ooh! Look at this!" Once we were stocked, loaded and inside the Ronnie House we let the kids play in the previously mentioned gigantic toy room and we got busy! 
Bridget made a pizza casserole and I made chicken pot pie. I had bought waaay too much chicken so I was slicing and dicing much longer than Bridget. Next time I'll make macaroni and cheese! 
As we cooked we noticed that the dining area was filling up. Honestly, I thought they were just visiting or wandering around. I didn't realize they were waiting for food! We cooked quickly and with little conversation. I think we were both so focused on making sure this meal fulfilled it's every intent. To satiate, to taste good and to warm them. (Their souls, I mean. It was like 100 degrees in there!) 
 Parents came in with their kids, it brought back memories of Isabelle and I eating at the same tables. I was thankful that we could offer them a home cooked meal. No hospital food tonight guys, no greasy burger either. 
When the meals were served and the dishes done we watched for a moment as the dining room full of only a few of the house's 48 guests ate. We watched as the tension released, the worry melted and the smiles came across their faces. It's a feeling unlike any other. 
I'm so thankful to Bridget Reed for giving up her Memorial Day Saturday to go with me, buy a bunch of groceries, chop, cook and bake in a face-melting hot kitchen and smile with me the whole time. (Thank you for bringing your camera, too!) 
Also, Alayna Balfour, my oldest friend in the world donated a bunch of juice for the Ronnie House. They were very thankful for it, Alayna. When one kid asked about it and I said, "It's for you!" she looked like I just gave her a million dollars. It's amazing what a little grape juice can do for the twinkle in your eye.

Now, I know that I have wrote a book here, I had such a wonderful time I just can't shut up about it. I will definitely do this again!

Below are some of the pictures that Bridget took! 

The grub! This was Bridget's station. Everybody flocked to her station because it smelled SOOOOO good! 

Camden and Izzy were playing with the Mcdonald's play set. So cute!
 Eating some grub! The little girl in pink is named Mara. I'm guessing she has been there for some time because everybody knew her name and everybody knew her antics. At one point somebody said, "Mara's been playing with the dishwashers again!" They're family and they probably won't even realize it until they get home. Cam and Izzy thought Mara was the coolest kid in the world, she spoke TWO languages! :)

More grubbing, different angle. Everybody was so thankful. I'm so glad Bridget and I could do this for them. 

Okay, I know it looks like everybody ONLY ate hers, but mine came out of the oven like 15 minutes after hers. They were hungry and admittedly, her cheesy pizza casserole was making me feel a little weak in the knees. I wanted it. I'm sure mine got gobbled up by the next wave of people coming in. :)

Bridget and Camden, thank you so much for doing this with me. I had a wonderful time and I can't wait to do it again! 
Love you guys! 
We were sweaty, but we managed a cute picture!

Tuesday, April 24, 2012

Roman's new crutches!

By now most of you have seen our cool new video. I'm sharing it again here, just in case there are a few who have not.
But I thought I would also take this time to share a few thoughts, as raw as they are, I need to get them off my chest.

Roman has only just started to become interested in his crutches. We always take them with us to PT. He usually prefers to use his wheelchair or just crawl. His PT Lori and I took a "when you're ready" approach to the crutches. We didn't push them. We'd ask about them, talk about them and sometimes he'd try them.
When Lori and Roman worked with his crutches it was always her doing most of the work. She would stand behind Rome and hover atop him. She would place her hands on top of his and most of the time she would support his body with her knees.
It was exciting to see Roman using his crutches, even though I knew he wasn't really doing much of the work.

I shamefully admit that I thought the crutches were just too much for him. "It's not enough support" I would confess to Jason over and over. But he told me to just keep trying them and that he'll get stronger. Looking back, I know I gave up the crutches too soon. But it was so incredibly painful to see Roman struggle with something. Seeing that pain made the idea of mediocrity sound...not so bad.

When the day came that Roman grabbed his crutches and said he wanted to use them, we delighted! We put his braces on and even though we were doing most of the work, he was finally getting excited about them. After a measly week of this, he did it. He walked with his crutches-with NO support. I trailed behind him, wide eyed and open mouthed and watched as my son, for the first time walked using his crutches.

When the day for PT came I was SO excited. I couldn't wait to show off Roman and his new skills. I couldn't wait to beam with pride as if I had believed it the entire time.
When Lori saw him she was just as shocked as me. She beamed, too. But she had reason to. Lori would never doubt Roman. I'm still kicking myself.

We meant to just show her that he could do it, but then he headed for the door, and then down the hall, and then down another hall. We took a small break at the water fountain and Roman made it to his destination-THE PLAYGROUND!
Lori and Roman "played" for almost our entire hour long appointment, and I'll never forget what she said to me. "My God Erica, he's going to walk into kindergarten!"

I won't lie, I started to cry. I've never thought it was a possibility before. I never believed my child would walk independently. I know, it sounds harsh and I know it sounds MEAN, but you HAVE to know that his entire life I've shrugged the idea off, so as not to hurt myself and not to make him think it was majorly important to me.
Of course it means the world to me, of course I think about it every second of my life. But I didn't want HIM to know that. 
When Lori proclaimed this I believed it. I believed it for the first time, and it blew me away.
I shared her words with as many people as I could that day, and each time I said it, I cried.
Roman continues to love his crutches. He continues to do super well and walk a little bit farther everyday.

I can't believe I ever doubted my little miracle man. I must be some level of crazy to think that he wouldn't take my expectations and blow them out of the water.

Roman, you have worked your cute, dimpled hiney off. I am so proud of you and I am, as always, in total awe of your strength.

Here is my little rockstar, but I should also mention because a lot of people have inquired about Izzy in this video, she's not jealous. Actually quite opposite of that. She wanted to be Roman's "spotter" and walk next to him in case he fell. The thing is, as much as she tries, when she "helps" it just ends in a giant kiddie doggie pile with crutches hurting somebody. So if you look closely, Jason not once but TWICE stops her from being the "spotter". She's VERY angry with Jason in this video, not at all upset with Roman. And you'll hear her happy as can be at the end. :)

Now, please excuse my raspy, screechy, whispery voice. It's been really weird for a few weeks. Focus on the boy, darn you!