A Sunny Pilgrimage

Annually, we make a sunny pilgrimage to Florida to visit our God, Dr. Jennifer Miller – a nationally, and internationally known expert on Prader-Willi Syndrome. If you have a child, or a loved one, with PWS, then chances are good that you know Dr. Miller. Chances are also pretty good that she knows your child too – meaning she can put a face to a name, match an email inquiry to a family, and respond on the same, or next day. She manages hundreds of PWS families, but makes you feel as if you are her only patient. Like I said, GOD.

For the last week or so I’ve been jotting down topics, and questions, that I want to discuss with Dr. Miller. I have the luxury of making a list as long as I want because I know with confidence that she will visit with us until every single question on my list is answer. No stone is left unturned. I can’t conceive of how busy she must be, but she never makes me feel rushed. GOD.

Excess saliva, sleeping schedule, potty training – as I’ve been reflecting on Joey’s last year, and what might lie ahead, I’ve found myself reflecting on something different, something deeper – Joey himself. Who is this bright, funny, loving, social, beautiful creature? You see the tricky part of having a child with special needs is that you (at least I) don’t know what to attribute to the “special need” (PWS, in this case), and what is actually just your child’s unique, one of a kind personality. Explanations can usually be deduced on either side, so how am I to know? Does Joey throw himself on the ground when he doesn’t get his way because a) he can’t speak and tell me he’s upset, so he’s acting out or b) he’s just being a diva? I don’t know. Did he just pick a banana peel out of the trash can because a) he’s hungry and the hyperphasia is becoming more pronounced or b) he’s just being a curious toddler who loves bananas and would happily eat them and only them? I don’t know.

And here’s the real kicker – I will never know. And even better – I don’t particularly care. I’ll never be able to parse out exactly what behaviors, moods, thoughts, emotions, are caused by PWS, and which are just Joey. I can’t keep a running tally, “that’s 3 for PWS today”. It doesn’t work that way, it’s not that neat. Joey is me, his Father, and PWS. There is no Joey without PWS. But Joey doesn’t have to be defined by PWS.

I still experience “bird’s eye view” moments – moments where I seem to be above, or outside of my body, witnessing life. In one week we will visit with Dr. Miller – an endocrinologist that specializes in PWS, the genetic disorder that our son has. Ah, it still feels a bit odd coming out. But if I’m being honest what feels even more odd is that I’m looking forward to it. Open the pearly gates, here we come God.

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Purchase with a Purpose

My inbox won’t stop dinging. The alerts of a new email carrying word of a “once in a lifetime”, “you can’t miss this”, Black Friday sale, have been arriving since Tuesday, at least. And for the record, auto correct just capitalized Black Friday without asking. Oh boy. While Black Friday (there goes that caps again..) is a bit excessive…ok it’s VERY excessive, small business Saturday (hello, where are you now caps?!?) has a message. I like to think that message is “purchasing with a purpose”.

For the third year I’m proud to blog about my support for small business Saturday (damnit caps!). During this time of year as gifts are purchased for friends, family, bosses, and beyond, I challenge you to send a message with that gift. Purchase with purpose. Explore your local neighborhood and reconnect with, or discover, your hometown small businesses. Now, just because there’s a “small IHOP” on Main Street, doesn’t mean it’s a small business…

I know that prices may be a bit higher in comparison, (certainly when you compare with Walmart), but personally, when I’m able, I will pay a few dollars more to a small business because I can be confident that my money will remain with the business, in the pockets of the staff, and in my community. Lord knows what Walmart does with my $44.97…and I doubt that I want to know.

Strapped to find a small business nearby? Well it’s a good thing Al Gore invented the internet! Etsy is most likely the largest “small” business around. It’s the epitome of small business, because it’s nothing but small businesses (or “shops”) all rolled in to one.

As you may have read in an earlier post, I opened a shop of my own! It’s also called the roo pouch. Currently all of my items, mixed media canvases, will ship for free!! Now I know what you’re thinking – “hey, this post is nothing more than another email about a Black Friday sale!” – no, no, I was running free shipping before the retail madness! Surely you can think of someone on your list that would be the perfect recipient of a one of a kind canvas. Especially the kind that ships for free 😉

If you can’t cross everyone off your list with a gift from a small business either (a) get creative (gift cards, an “IOU dinner date” to a local eatery that doesn’t sell gift cards) or (b) purchase as many as you can, even if it’s only a handful. Big box stores will always be around – no economic recession will take them down (that’s the point), but your local small business isn’t always ask lucky. Purchase with a purpose, at least tomorrow, Saturday, November 30, 2013.

Support my small business, support your hometown small business, or both – purchase with a purpose tomorrow, and for as many days after that you are able.

http://www.etsy.com/shop/theroopouch

Drive On

There’s something about a comment from a stranger, a mere observation, that when shared, can really make an impact. I had just flown from Philly to Indianapolis with Joey and Emil – just the three of us. It was quite the ride, to say the least. Traveling in general is difficult, even if you are alone. But add a 2 1/2 year old and an 8 month old who’s teething and it’s a whole ‘nother ballgame. Let me show you – picture this – Emil is in the carrier on my chest, I’m pushing Joey in his umbrella stroller while balancing a way-too-overstuffed tote bag on my arm…arrive at the end of the corridor where the door to the plane awaits…stand Joey up to get him out of his stroller (oh and did I mention that I am dripping with sweat both from stress but also from wearing my jacket because my suitcase was stuffed- it’s a great look)…only to notice that he’s peed all the way through his pants. Well, too bad son – the changing table in the bathroom is the size of an unfolded napkin – not at all suitable for an almost 3 year old. I also don’t have any dry pants. So I love you, and don’t hate me, but you’re going to sit in those wet pants for approximately 2 hours. Mother of the year – right here. Flash to Emil going crazy in my lap – until you reach cruising altitude an infant must be loose on a lap, and not in a carrier – so I’ve got WAY TOO long to endure his jumping, slapping, screeching, hair pulling, and eventual cheek biting (that’s my cheek). Cue the tears…Mamma’s tears. God damn I want this plane ride over with…

I’ll spare you the rest of the journey, I’m haunted by it and don’t want to do the same to you. We finally land and that’s a good thing because I’m ready to squeeze through the “window” and kiss the ground. We unload and make our way to the bathroom so I can finally, finally, change JPK – poor babe. Good news – I don’t think he hates me. I made a bee line for the “family bathroom” so I could have some privacy, but mostly, I was craving room. We had been cramped up and sitting down for too long. The bathroom was occupied when I arrived so I waited. When the door opened it was a Mother and her daughter (a pre-teen) who were on our flight, sitting a few rows up. “Oh boy, I bet you’re glad to be on the ground aren’t you” – she said with a mix of pity and empathy. “Well, yes, I am, but I still have to wait for my husband to come pick us up and he won’t be here for 2 hours – but the important part is that the plane ride is over haha”. “Well, you are really brave, for what you did, I couldn’t have flown with two children like you did – you are a really strong Mother”. And here’s the kicker – she wasn’t bull shitting me. It wasn’t a “oh, we are both Moms, so let’s give each other a half-ass “been there, done that” smile when we pass on the playground or in the grocery store”. No, this woman meant it. You know sincerity when you hear it – mostly because you know bull shit when you hear it. She looked me right in the eyes when she paid me the compliment. “Oh, well, thanks, I appreciate it”. I knew I was blushing, despite the sweat that had continued through the flight. I went on to change Joey while still wearing Emil in his carrier (it’s an art I tell you, and I have it mastered)…we saddled up, and out we went to retrieve our things from baggage claim.

Our exchange stayed with me though, and I’ve thought about it often. Sure, many people have commented “How do you do it?”, that whole bit, to me many times before. I’ve appreciated all of the compliments, but this woman was a stranger. She didn’t have to say anything, and she didn’t have to repeat her praise – but she did. She could have exited the bathroom, gave an internal “thank god I’m not her” as we passed, and we could have never spoke. But we did. And I’ll always remember her, and that moment. Just as I will remember being in my Nana’s house a few weeks ago, my Mom was there too, and we were all wrangling the boys – it was a team effort. There’s something about being with your Mother, and her Mother, and now being a Mother, that really shifts your universe. It instantly matures you – whether you’re ready for it or not.

The truth is, I have no idea “how I do it”. I don’t. I don’t know because I just keep my head down and drive on – if I must have a “secret”, then that’s it. I drive on like when I was rounding the back corner of the 400yard dash in high school, like I did when I wrote my graduate thesis, and just as I do now when I’m juggling (literally) everything at once. Perhaps my perseverance and drive is core to my personality – I think so. I just do. I just am. I just. keep. going. I am a chef, an alarm clock, a maid, a personal assistant, a nanny, an entertainer, a chauffer, a salesman, and above all – the CEO. At times I take the “flipbook” approach to my day – I just keep completing tasks, and chugging through. If each “task” were a “page”, at the end of the day I could sit down with my now constructed book and flip through the pages, thus seeing my day in an instant. Some days the book would be longer than others. Some days the book would include intense frustration. It would always include crying (the length, and author of the cry would vary)..and it always, always would include laughter.

Now don’t get me wrong – there are some tough, tough times. Some days, many days, I have survived by the skin of my teeth, and barely with my sanity. But when the sun rises, and Emil pops up in bed, and Joey busts down the door and struts in – it’s a fresh day and we do it all over again. I’ve learned so much about being a Mother so far. It’s true that you don’t know how much patience you have until you become a parent. I think this is true because you are so frequently pushed to the very boundary of your patience, and past it, on many occasions. I am finding my limits, and stretching them. Drive on.

Pop

It’s easy to live life in a bubble. And by easy I mean – ending up there without even knowing that you are there until it’s too late – you’re in a bubble. I’m not sure if it was my busy job, my unique job, not having the time to catch up over “play dates” with friends who also had children, being an introvert, or being in denial.

I was standing in the play room at the Morton Community Center, Emil on my chest in his carrier, while I watched Joey and his “buddy, Nicole (a grad student at Purdue) pretend they were doing the wash in the plastic washing machine. When BAM -We’re in the bubble. Yep, here we are – but now, in this moment, we are outside of it. That’s the catch – you don’t know that you’re living in a bubble until you find yourself outside of it

The three other students in the speech class were involved in “parallel play” – not really playing together, more side by side doing the same thing, but still, they were at least close geographically. Joey was on the other side of the room, engulfed in the corner of the room designated for books, alone, yet completely content.

I don’t have very many moments like this – moments when I am confronted by the “bubbleness” of our life. Sure, I am confronted by Joey’s special needs on a daily basis, but that’s different. I’m still inside the bubble when I’m telling that reality to F off. No, this is different – this is a “catch you in your throat, punch you in the stomach, make you blink a few times” type of moment. A “holy shit, we’ve been living in a bubble”. It’s difficult to explain – maybe it’s the other kids running, bounding up the jungle gym with ease, talking in full sentences, just doing. It’s looking over at Joey and watching him do whatever he is doing, alone, and wondering “will it always be this way for him”?

I don’t know that I’m in a bubble until someone pops it, and shows me the outside world. But then, all I want to do is run back inside and cover up the hole with some duct tape. It’s tough – comparing your child’s milestones to someone else’s everyday.

Am I happy? Yes, don’t mistake this post for something it’s not. Should I seek out moments to “pop the bubble”? I don’t know. Will that make things easier? Joey and Emil more resilient? Me? But it’s so comfortable inside the bubble. Warm like snuggled under the blankets on a crisp fall night.

My first year as a Resident Assistant we had to enroll in a class and one of our assignments was to take a “cultural plunge” – to engage in an activity that “put us outside of our comfort zone”. I suppose that being a Mother is to live on the end of your comfort zone daily, to wake up, plunge, go to sleep, wake up, and repeat, and again, and again. Some days the repetition is almost maddening. Every night I clean up the toys and think “they say the definition of crazy is to repeat the same thing over and over” – PREACH.

There’s a bubble over our house, we are inside, sometimes we are forced out, but mostly we stay in. And for now, I’m okay with that.

What’s in a Word?

I’ve been thinking a lot about the concept of “Motherhood” lately – what it means to be a Mother, how I’m viewed as a Mother, and of course, the kind of Mother that I am becoming. Now let’s get something straight – this post is NOT meant to confirm my worth as a Mother – I know that I’m a great Mother, nor is this post intended to be a “I know Motherhood isn’t easy, but boy is it rewarding, and all rainbows and unicorns and butterflies”. No.

There seems to be something about having a second child, at least for me, that heightens this part of my identity. And I know that moving, and leaving my job in order to transition into a “stay at home” mother – (whatever the hell that means), well that most certainly is bringing this part of my identity into focus. Spending approximately 12 hours daily with your children is WORK. I’m still taken a back, and subsequently annoyed, when someone asks me “if I’m working” – oh I’m working alright. All god damn day, literally. I just don’t have to leave my house to go to work. I clock in when I’m STILL IN BED. I get paid in hugs and kisses instead of Jacksons and Lincolns. No being a Mother is work, hard work – that’s lesson #1. It’s physical (hello, mystery bruises), emotional, and psychological. Anyone that says otherwise probably isn’t doing it right. And if that’s all you put on Facebook, like most people, I know for sure that you are lying, I’ve got your number.

This “job” is also one that I’m going to be “working” for the rest of my life. I’ll never stop worrying about Joey and Emil, never. There will be some difficult moments, sure. Some will be predictable – bad grades in school, getting cut from a sports team (highly unlikely – do you know my genes…), being dumped – you know, the general life milestones. And some moments won’t be predictable “Mom, why can Emil run faster than me”, “Mom, why do the kids tease me at school”. Mothering a child with special needs, and one who is “typically developing” (again, whatever the hell that means), is interesting. Some days it’s a breeze, some days is a STRUGGLE. Like a STRUGGLE. But then again, I know that’s typical for any Mom, regardless of the child.

As I can feel who I’m becoming as a Mother I’m beginning to re-evaluate the worth and legitimacy of my own relationships. I’m understanding more about the connection between others, and how vital it is to role model healthy relationships, and values, to your children. In so many ways I feel so aged (physically) after having two children, but I am starting to feel so aged with wisdom. Multiple times during the day I experience these odd out of body moments. Almost as if I am watching a bird’s eye view of myself, but the new, developing “me”. When I’m swinging Joey around in the living room, or avoiding his signature wrestling move (the “butt slam”), or both are crying and I am going insane, like absolutely insane, or carrying Emil on my left hip so he’ll stop crying while with my right hand I’m pleading with Joey to eat the awesome meal I fixed (because god damn I’m super Mom here and I made you this awesome lunch with the zero time that I have so EAT IT), or one time when I had Emil and Joey in the bath and they were both splashing and I was getting soaked – but they thought it was hilarious, and subsequently so did I (soaked walls and all).

Who is this woman? Who have I become? When did this happen? I have no clue how to answer any of those questions. There’s so much more to be discovered. I can’t wait. Now if you’ll excuse me, I better turn in because I have to be up early for work…

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Welcome Home, Again

Well, that was certainly an unintended hiatus from blogging! Is that what happens when you join Facebook after resisting for a decade…damn. I’m hoping that by typing a commitment to blog more, it will actually come true – blogging was a productive outlet for me, and sorry Facebook, but you’ll never quite live up to that.

So much has happened in the last 2 and a half months – enough to pack into 2 and a half years…

-Move from your residence hall (home) to a temporary space
-End your position (for now, at least) in Student Affairs
-Pack up all of your belongings
-Rent a UHaul, hire movers
-Movers arrive…but all they are packing is bad news – your uHaul is too small…
-Rent a second uHaul
-Drive 18 hours from Delaware to Indiana
-Unpack two uHauls
-Live amongst boxes, so, so many boxes (what is all of this shit??)
-Work a little bit every day to set up your new house!
-Feel exhausted
-Hang the last picture…exchange comments with your husband that “this place is finally starting to feel like home”
-Discover asbestos in the basement…
-Face reality that you have to move…AGAIN
-Go insane with stress and worry about where you will find to live, one week before school starts
-Drive around the area for 4 days, nonstop
-Spend hours on Craigslist
-Discover a house that you love, in a location that you love even more
-Successfully stalk the house, and meet the Property Manager
-Foam at the mouth in an attempt to convince him that you love the place…and also really need it, like yesterday
-Pack up your current house (this time, much LESS formally – i.e. trashbags…)
-Hire movers, THEY unload the uHaul
-Unpack, AGAIN
-Feel exhausted, AGAIN
-Settle in, AGAIN

One becomes quite adaptable in the midst of enduring and overcoming the above list. There’s always a silver lining, I suppose. I did learn a few important lessons as a result of the situation, and I’m fortunate that I’ve been able to weed through and pick those out during my reflection.

So here we are in West Lafayette. Not in the house we thought we’d be in, not in the area, not in a lot of ways – but often life has a way of delivering to us what we need, even when we didn’t know we needed to ask for it.

I suppose my hiatus from blogging can also be explained by my plunge into my own etsy shop! When my dear friends Siobhan and Jimmy had birthdays approaching, I knew that I wanted to make them something special. I made each of them a “washi canvas”, a unique creation. I enjoyed the process, and product so much that I decided to open a shop. I’ve always fantasized about having my own shop, but I wasn’t sure what I would sell. Win/Win.

Almost every night for the past month I’ve been working on a canvas – either one to list in my shop, or one for a friend or family member that’s been custom ordered. It’s a labor of love for sure, and it’s also been a much needed escape, a “mamma’s moment”. I’m branching out into different materials and learning what is working, and what’s not – I’m excited to continue exploring and making these unique pieces. Check out http://www.etsy.com/shop/theroopouch. See something you like? Interested in working with me to create a custom canvas for someone special? Use the code “roo pouch blog” for 15% off 🙂

The house is quiet and it’s tempting me to enjoy it…

Taken at the Art on the Wabash Festival
Taken at the Art on the Wabash Festival

Time’s Arrow

Better sneak this post in before August 3rd is over! Emmy turned 6 months old today – WOW. Let me say it again, WOW. While each of his “monthdays” are significant, this one is especially significant. Things start happening by 6 months – babies have a personality, hair, a tooth or two, and are continuing down the road to independence. Emil is a ball of fun – he laughs, babbles, started saying “ba ba” and “da da”, and because he has no teeth his lips fall into his gums like an old man’s (which looks hilarious). His hair is coming in and showing itself to be a light brown (blondes are superior, but I’ll guess we’ll keep him :)). Perhaps most important is his ability to roll over, and almost sit up unsupported. He is one hell of a kid, and we’re lucky enough to have two in that category.

August 3rd is extra important because at this 6 month mark many life events have happened. I had a baby (obviously…), I left my position at UDelaware, and we moved, 700 miles away to Indiana. The emotions attached to each of those life events could fill a year, or two, easy – but they’ve jammed packed themselves into the last 6 months of our lives. I worked at UD for 5 years and I worked HARD. I gave all of myself to my department, my colleagues, my staff and students. If you knew me as a professional then you know that my work was a HUGE portion of my identity. Right now that’s gone, and I’m in the process of transitioning into finding out more about myself so I can continue to mold and shape my identity. And we moved – like far. Joey and I have both lived near our hometowns for our entire lives. So to pick up and move was pretty monumental. Certainly we miss our family and friends, but now here we are, in Indiana figuring out our family unit of 4, supporting each other, making each other laugh, and wrangling these two kiddos on a daily basis.

Time is funny. On some days it passes very slowly, and in other moments it seems to elapse so quickly that it doesn’t seem fair. Milestones are marked by time. Life is marked by time. Our son, both of our sons, have grown significantly in the last 6 months. And at a second glance I realize that we all have.

Happy 6 months Emil – we love you King Kong!

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From the halls of Hobby Lobby

A routine is finally developing. Boys are still boarding the bedtime train later than I would like, but if that’s the worst of my problems then I’d say we are doing just fine.

If you are halfway familiar with my blog, then you know that I enjoy a good DIY project from time to time. Nothing fancy, or expensive – just something to exercise the part of my brain that doesn’t involve conversing with a 28 month old and a 5 month old…oh and a 33 year old 😉

Here in WL we have a Hobby Lobby – I’ve never been to one before last week and let me tell you it is quite the store! It’s absolutely monstrous and I’m fairly certain that it will take me as long to explore the store as it takes Joey to complete his phD. The prices are a bit steep, especially considering almost everything in the midwest seems cheaper, but on the other hand anything you could ever need can be found inside.

Today was actually my second venture into the store – I went for the first time last week to pick up supplies to make a wreath for the front door. As we toiled through the process of unpacking our belongings and making use of all of the new nooks and crannies in the house in which to put said belongings – I knew that a wreath would instantly make our house feel like a home – OUR home. 

I couldn’t be more pleased with how it turned out – and it brings a huge smile to my face everytime I see it. To me it says hello, welcome, and a damn good crafter lives here 😉

 

 

 

 

 

 

 

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Today’s adventure into the long halls of HL was for garland supplies. Specifically, scrapbook paper, a die cut, and twine. But of course, something else caught my eye – WASHI! Confession – I’ve wanted to do something with washi tape since I learned about it, but I could never find a project that motivated me. So I shouldn’t be surprised that HL delivered (have I mentioned how big that place is?). I found entire sheets of washi tape – not the razor thin rolls of tape that I’ve usually seen washi come in – leaving much to be desired. No, this was a whole SHEET – the sky was the limit. I threw the book in my cart fast because it was the only one on the shelf.

It didn’t take much browsing to find the product – three heavy weight cardboard stars. Perfect – simple, inexpensive, and multi-purpose. They too were tossed in my cart. I navigated my way through enough of the store to find what I actually came in for, and the two boys and I (together, the three shopping musketeers) headed for the checkout, and eventually, home (after starbucks of course – we’ll call it “crafting fuel”…).

As expected the washi stars couldn’t have been easier to assemble. My thought right now is to get more and string together on twine to make a garland accessory for somewhere in the house, maybe across the back windows. Closer to the holiday I think they will make nice gifts – and hopefully receivers will agree!

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While on the surface it looks like I made something – I did, I “made” three little washi stars, if we will agree that “making” can be defined in this instance by taking pre-made products and putting them together and calling them your own…so sure I made something, and I think they are adorable and I enjoy seeing them.

But the stars represent something more, something much more, along with all of the other DIY projects that are scattered around the house – they represent independence (if only for a moment), self-advocacy, and reflection. The end result isn’t even what’s the most important here, I’d argue – but rather, it’s the means to the end that matters to me.