Wednesday, December 10, 2014

I Saw You in the Audiology Waiting Area

To The Parents Waiting for Their Follow-up Newborn Hearing Test,

I see you sometimes, in the audiology waiting room. I'm usually popping in for a MAPing, or occasionally some aural rehab, or a research study. I know your brand new baby failed their newborn hearing screen. I know you're here for the follow up test. I know this because I can see your hopes and dreams spilling out of the car seat, smashing on the cold, sterile floor. I know.

I see you notice with extra interest the devices that my daughters wear. I see you wondering to yourself if this is your future. I see the fear and uncertainty and the tiredness etched in your face. I know.

I want you to know something, too. I smile at you in the waiting room, so that you'll know that we are happy. I talk to my daughters, so you can hear their lovely, little voices and see that they hear and understand mine. I casually replace a disconnected magnet so that you'll see that even hearing loss can become second nature in the same way that it soon became second nature to wrap your firstborn in a blanket and rock them to sleep.

I don't want to gush to you about cochlear implants, because maybe your baby won't need them, or maybe you won't want them. But I want you to know that my oldest child went to ballet class, like I dreamed for her. She took guitar lessons, like she dreamed for herself. I don't want to make you feel like you shouldn't be sad or scared because it can be a sad and scary thing to discover yourself suddenly living a life very different than you expected. But I want you to know that you will meet so many incredible people in this new life. You could even begin to learn a new and beautiful language if you chose.

You have a lot of work ahead. It's true. Big decisions (cochlear implant?) and little (sparkly ear molds for the hearing aids?) await you. There will be a lot of therapy and doctor visits and late night Googling. There will. There will be angst over schooling choices and fears of fitting in. There will be a little ache every time you hear beautiful music because a tiny part of you will still wonder how it sounds to your children's bionic ears.

But there will also be triumphs made sweeter because you'll have been there every grinding step of the way. There will be opportunities to grow in compassion and strength. There will be the marvel of hearing each sound as though for the first time when your child is learning to listen.

A few weekends ago I took Gianna to see a production The Miracle Worker, William Gibson's play based on Helen Keller's memoir. In one of the opening scenes, Helen's mother begins wailing inconsolably when she discovers that Helen can no longer hear or see her. Her eyes wide with alarm, Gianna turned to me and asked "What's wrong? Why is she screaming like that?" I responded that the mommy had just realized that Helen was now deaf and before I could finish my sentence she interjected,
"Well...that's not that bad!"

So, little family in the audiology waiting room. This is what I want you to know. It's not that bad. All those hopes and dreams falling out of your infant seat....they're not as fragile as they seem.

Wednesday, November 19, 2014

Same as Mama


Pia started school in August at Ohio Valley Voices, the same school Gianna attended from age 3 to age 6. I've written previously of my work cultivating the image of being the laid back parent, and I am continuing this work as you shall see.

If you've had the fortune of birthing a child, you know that for a little while after the blessed event occurs, toilet paper can be a little....abrasive. Luckily, God invented the peri-bottle and your hospital will gift you one for just this need. It is the same with home birth; the box of sterile supplies you order for your midwife to use always includes the peri-bottle and if you're like me, you save it.

You put it in the large bin that contains your birthing things and send it to be stored at the neutral ground of your mother's house because your sister, with whom you share the birth items collection, doesn't need the birth bin just yet, and you hopefully won't need it for awhile because you just did that and are taking a little break. We all know that stating "Oh, I don't need this maternity shirt/baby swing/birth kit right now" is a good way to make sure you get a positive home pregnancy test, thus the importance of a neutral storage ground. Anyways, eventually your birth bin contains quite the collection of peri-bottles.

After Dominic was born, I saw the dearth of peri-bottles and conveniently placed one in each bathroom so that I would never be without. Gianna was about two and half years old at the time and still very much in the habit of joining me in the potty. She had set up her little potty right across from the big one so that we might have the joy of using the facilities face to face. The first time she saw me use the peri bottle, her eyes lit up and she sprinted from the bathroom, returning with the other peri-bottle. She handed it to me and signed, NEED WATER.

Like a good, laid-back, mom, I filled it up and handed it to her. I watched as she settled on to her little potty, peed, and then used her peri-bottle to clean up. She looked up at me with a grin and signed, "SAME! SAME AS MAMA!"

Fast forward to a few weeks ago when Pia, the current two year old, observed the usage of a panty liner one evening. She insisted that I put one in her nighttime pull-up, so like the laid-back mom I strive to be, I did. She was so happy. Triumphant, even.

"Same! Same as mama!" She announced. I put her to bed and when she woke up the next morning her pull-up was still dry, so after I took her potty I put it back on her and rushed out the door because we were on the verge of being late to school and I am lazy and plus, reduce reuse recycle.

It wasn't until I was taking her potty during drop-off that I remembered the panty liner, still stuck to her pull-up. I sat on the floor of her school bathroom and looked at it, considering my options. I could try to rip it out but I'd risk tearing the pull-up and needing a full wardrobe change or worse, she'd see me remove it and put up a fight. Or I could just leave it there. So that's what I did. I left the panty liner stuck in her pull up and I didn't even alert the school staff to its presence. I wonder what they thought. Probably they thought about how we are their favorite family. Let's go with that.

Monday, August 4, 2014

Experiencing the International Symposium on Usher Syndrome and Family Conference #USH2014

I walked into the conference center on Harvard's Medical School campus feeling completely out of place. I made a cup of coffee from a large, silver coffee urn and took a muffin to a table in the sun-filled lobby, where I surreptitiously checked out my fellow attendees. Momentarily overwhelmed, I saw people using tactile sign, white canes, and guide dogs; I heard German and French and English, science (oligonucleotides, anyone?) and parents (intense discussions on keeping cochlear implants and glasses on the ears of small children.)

A moment later a man wearing dark glasses was guided by a woman to my table. When he brightly signed GOOD MORNING, HOW ARE YOU? and I responded, GOOD MORNING, I'M FINE, he began a flurry of ASL. I tried to keep up and responded with an apology; explaining my ASL has become a little rusty. He stopped me mid-sign, reaching over to take my hands and then telling me, "NOW, AGAIN." Haltingly, I repeated myself and he smiled and said, "THIS IS HOW WE DO THIS--IT'S CALLED TRACKING."

When I told him I had two daughters with Usher type 1b he replied, "I'M RENÉ, I HAVE USHER, AND I'M OK." Between sips of coffee he told me crazy stories about driving on country roads and his work as the State Coordinator for the Deaf in Vermont.

In those first ten minutes, even before the Symposium officially began, I knew it was good to come here; I knew this was the right place to be.

Much of the first two days was confusing and complicated-we were well into the afternoon session on functional genetics before I figured out that the presenters were exploring how the Usher proteins work (or don't, as is the case) and where they are implicated. You can't fix a problem if you don't know how the problem is precipitated in the first place. Many of my notes devolved to the astute observation of "more mice" and "so many mice." I did learn that one difficulty in using mice as test subjects is that mice do not get retinitis pigmentosa the way people do, so finding a model was one facet of the research presented.

I gained a much better understanding of how the eye works, though I still find it more complex than my old friend, the cochlea. I am incredibly thankful that parents were encouraged to approach the doctors and researchers during the coffee breaks and lunches, which, after listening to their brilliant work aimed at helping those living with Usher, felt a little like approaching movie stars at the Oscars.

I had the opportunity to be a complete emotional mess when I got a chance to speak with Dr. Mark Pennesi, who is working on a currently running clinical trial; "the first study that aims to treat RP due to Usher Syndrome by gene therapy." He was so compassionate and patient when I blubbered about hoping the trial goes well enough that I can bring my girls to see him for therapy in the future.

Throughout the presentations I found myself fighting back tears; of sadness and relief and joy and awe. I kept thinking, "These are the people who will help Gianna and Pia; thank God for smart people." Each fellow parent I met brought new perspectives and sage advice. I learned the solace that can come from being with others who really know what you are going through.

Meeting adults with Usher and hearing about their joyful and successful lives assuaged some of my fears. I loved learning about the things their parents did to support them and I took note of things they felt were unhelpful. In many ways, parents of very young children with Usher are charting new waters. Genetic testing and universal newborn hearing screenings are changing the typical age of diagnosis from adolescence to toddlerhood. How do you talk to a four-year-old about retinitis pigmentosa? A five-year-old? A seven-year-old? We're all trying to figure that out.

My own seven-year-old seemed to enjoy herself and accepted other people's use of guide dogs and canes not as a concern, but as a fact, in the same way some people use cochlear implants to listen. The night after the conference finished I was discussing with my mother whether or not it was hard to see people with guide dogs, and Gianna piped in,"Why? Why is it hard?"

I'd forgotten she was listening to our conversation so I stammered, "Well...you know...mommies worry sometimes about their kids. It can be hard to see grown ups with Usher and then worry about whether your kids might need a guide dog someday." She considered this and said,
"But...you're not worried."

I sat there, frozen in disbelief. How could she think I'm not freaking out? I spend inordinate amounts of time battling anxiety over this whole deal, how does she not perceive this? In that moment, though, in our hotel room, I realized that she didn't think I was worried because we've tried to present her with information about her diagnosis that is factual and positive. We've managed, so far, to acknowledge her differing abilities while seeking out ways for her to access all the experiences a kid can have. Cochlear implants and vestibular rehab, canes and guide dogs, in her eyes these are all just tools; they do not carry the emotional weight that my anxious, adult mind gives them.

"Sometimes I feel worried but right now, I don't. Right now I feel happy to see doctors working on ways to keep your eyes safe and right now I feel happy to meet the people with guide dogs and canes and hear their stories." She smiled and went back to playing with her newly acquired swag from the American Girl Doll store.

 The Symposium changed me. That is the simplest way I can describe my time in Boston; I came away changed. At the barbecue wrapping up the family portion of the conference, I watched Gianna run across the lawn and trip over the same step that almost every kid and adult with Usher had tripped over and she didn't feel self-conscious at all because she wasn't the only one. I heard scientists express how inspired they felt after meeting the families they were spending so many hours in the lab to help. I felt an incredible peace being encouraged by a woman my age with Usher that my girls are going to be ok and that I'm doing a good job while Gianna snuggled with the woman's sweet guide dog. In each of these instances I caught myself thinking that not everything about having Usher is bad. I'm so thankful for the experience of #USH2014.

Saturday, July 19, 2014

And Weekend Always Go Fast

The summer Pia was born lives in my memory as the summer of popsicles. It was so incredibly hot that over the Fourth of July weekend, when I painted her changing table a fun, new color, the paint dried almost immediately. Great with child, I kept wandering over to the inflated baby pool to cool off amidst the splashing and shrieks of a freshly five-year-old Gianna and a two-and-a-half-year-old Dominic.

After Pia arrived, our family and friends completely spoiled us with visits and meals and gifts. In my experience, the first few days after having a baby are the best. I've not had to go to the hospital to have my babies, so I'm already tucked peacefully in my own bed, hearing the sounds of my household humming along joyfully while I snuggle my new babe.


My Babymoon with Pia also lives in infamy because Brad was able to take off almost 4 weeks from work. I wish every new mom had that luxury. He took the big kids to the pool almost everyday, made breakfast and lunch, was able to be present with me in the quiet, magic moments newborns create and also be there as a support in the moments when I seemed to be going off kilter with three small people needing so many things at once.

Mostly, though, that summer was idyllic because we didn't know about Usher Syndrome. Of course I wasn't completely worry-free; I worried over the same things all mothers with newborns worry about, and some extras. I could tell, even in those early days, that Pia might not pass her hearing test, but that didn't seem as scary since we'd already dealt with hearing loss. I had a team of people to rely on, I understood the cochlea and speech therapy. I understood that it wasn't going to be easy, but I knew the tools we had available and I knew how to use them.

As we've celebrated Pia's second birthday this weekend, I've reflected on that summer and I've wished to go back in time and push the pause button. No one gets older, no one goes back to work, no one progressively loses their vision. That's not possible or healthy, of course, I chide myself, but sometimes I long for it.

 It occurs to me, though, that I always knew we were living with Usher Syndrome. It just didn't have a name. When Gianna was born, I remember wondering if she was going to be ok. I remember standing at the changing table with Pia and unbidden, the thought jumping to my mind, "I hope she's going to be alright."


I never once had those thoughts about Dominic. I know those thoughts were the shadow of Usher. I still worry. A lot. I still have those thoughts jumping to my mind, watching Gianna play Marco-Polo in the pool or Pia struggling to walk on uneven surfaces. Sometimes I'm just driving down the road and they come to me, along with a sudden tightness in my chest and I have to take a very, deep, slow breath. Now, though, I can name these thoughts and this anxiety. It is named Usher Syndrome and we are surviving it. In fact, I look at the smiles on the faces of my girls, the joy they bring to our family and the broader community and I realize, we are even thriving despite it.

I'm so glad we have our PiaBaby. I love to watch Gianna and Dominic dote on her and encourage her to use her little voice. As much I want to go back to the summer she was born and stay there, life is speeding along, and I've spent much of her two short years here worrying and struggling with grief. I know now that the grief cycle replaying itself is part of living with Usher Syndrome as milestones are delayed or missed, as changes in vision take place and new accommodations must be made.



These two years were gone so quickly. I can't get them back. I blinked and today I have a seven year old and a four-and-a-half year old and a two year old. Today, everything is ok. I'm going to be in this moment, this weekend, and hang on to it until it slips by in to the next moment; whether it will be peaceful or difficult or sad or joyful and know that nothing was wasted.
 



Monday, July 7, 2014

To Boston, To Boston

In June we traveled to Virginia for the ordination to the priesthood of a good friend of mine. From our seat in the back pew of the side aisle of the cathedral, I could see an interpreter, dressed in black. I commented as much to my friend and she responded, "Oh yeah. They always reserve that pew for people with hearing impairments."

We have hearing impairments. We don't really need an interpreter but the front row seats beckoned to me. I went and asked the interpreter if he thought any other Deaf people would be sitting in the pew; people who would actually need to be able to see him, and he insisted there would be plenty of room and we should sit there. So we did.

If we have to do it, we might as well do it.

I've said this to myself a lot in the years spanning the time we learned that we had a child with hearing loss. We picked out fun, hot pink processors after Gianna's cochlear implant surgery because if we have to do it, we might as well do it. All the way.

This week in Boston is the International Symposium on Usher Syndrome and Family Conference. Just my mom, Gianna, and I are going. They are going to do fun stuff, like check out the American Girl store and ride the T and visit the Children's Museum. Because if we have to do it, we're going to do it. I, on the other hand, will be sitting in presentations given by researchers from all over the world. The topics have titles like "Unsuspected Phenotypic Heterogeneity in Usher Syndrome Revealed by Massive Parallel Sequencing" and "Study of Splicing variants in the USH genes through minigene assay and transcript analysis."

Guys. I was an English major. I barely remember the Punnett Square from high school biology. To say I feel ill-equipped is an understatement. I'm bringing business-casual clothes, and my glasses that make me feel smart, and my iPad mini, and I'm going to sit in the front and take notes. If I have to do this, I'm going to do it.

The hard part is that I don't actually want to do it. I don't actually want to go to Boston, even though it is a lovely city and I enjoy traveling and under any other circumstance I would be thrilled to take Gianna on a little trip with my mom. I don't actually want to attend this conference, because I don't actually want to be an Usher Family.

It feels kind of good to put that on paper. For months leading up to this trip, I've repeated to myself internally,"We have Usher. My girls have Usher. We are an Usher Family. This is part of who we are" just to make myself believe it and accept it but most of the time it still feels so surreal. I'm nervous about taking Gianna to the family portion of the conference. We've spoken in broad terms about what is slowly happening to her eyes but at this conference there is no escaping it: there will be blind people there. They will have guide dogs and white canes and Gianna will see them. It is hard not to let my worries and fears run away with me.

I am trying to remember that there will be talk of promising gene therapy there, and a barbeque, and the blind people will become people with stories. Stories of struggles and successes and hopes and dreams and insights. There will be other moms there who are farther along in this journey than I am. We'll probably even have fun and make life-long friendships. I'm trying to remember that if we have to do this Usher thing, we might as well do it.

Wednesday, April 9, 2014

This and That

How's ya life?


Right. Jumping in. There's this trend around here lately, and maybe elsewhere, I'm not sure, where all the birthday invitations Gianna has received say "in lieu of gifts, please bring a canned food item/blanket/book/etc to be donated" and it.is.GENIUS.

I plan to copy cat that for the rest of ever. Not only do I think this is great for cultivating charity, it's also nice to prevent the exchange of random stuff without feeling like a jerk for not bringing a gift. Spread the word.

 Gianna's school held a benefit concert where I heard a new song by a group called the Pawn Shop Kings and I canNOT stop playing it.

More videos! PiaBaby is finally bipedal, praise the Lord. Although she is reluctant to use walking as her primary mode of travel when on the first floor of our house. I can't blame her, lots of tile and hardwood and the vintage nature of the construction of things render the floors pretty uneven in spots. But. I feel like she has turned a corner, and her protective reflexes are really solid...she actually puts her hands out to catch herself, and often manages to fall on her knees and not her face. We might dodge a call to CPS after all. She is coming up on 21 months...definitely within the typical time frame for kids with Usher 1, and just a few weeks behind when Gianna started walking.
video


Gianna is taking guitar lessons which means that I, also, am taking guitar lessons. Mr Gillum, the teacher, asked if I played and I laughed out loud. I used to get kicked out orchestra class for talking too much, and all I have to show for my time there is a busted viola. Gianna is really enjoying it and it's fun to see her take an interest in something and work at it. I can't help watching her in class and musing about how her cochlear implants and her ability to use them to hear and speak are what allow her to be sitting there, learning to play a G chord and laughing at the antics of a fellow student.  I'm really, really, grateful she's been given this opportunity.

Which leads me to....my sister. She has been training to run in the Flying Pig half-marathon here in Cincinnati to raise funds for Gianna's old school, Ohio Valley Voices. Pia will begin attending there in January. I can state pretty confidently that without OVV, it is unlikely that Gianna would be in guitar class or attending a private Catholic school without an interpreter. If I can get some organizacion up in here, I hope to write a longer post detailing our decision to switch to Ohio Valley Voices and why we are so thankful that we did. In the mean time, if you would like to show support for Ohio Valley Voices in a monetary fashion you can do so here. I think. I hope that is the right link. Thanks!

Lastly, Gianna had a check up with the retinal specialist who had officially diagnosed her with the early stages of retinitis pigmentosa back in October. This specialist was in agreement with the one we saw in Boston that for Gianna's age and disease type everything looks more mild than they would expect at this point. Praise God. Thank you for your prayers for us!!

Thursday, February 20, 2014

No Turning Back

I recently came across an old journal spanning the time when Gianna was first diagnosed with hearing loss up through her cochlear implant surgery nearly a year and a half later. Skimming those pages was slightly painful and embarrassing. What a dark place I was in. What a dark place I can so easily find my way back to. What can keep me from going back to that place?

Oh Lord, you will lead me in the valley of the shadow. Grab my hands, Oh Lord, so they might only cling to you. Take me by the shoulders and guide me so that I might stay in the lighted path. Direct my gaze, Oh Lord, so that I might see the blessings that surround me.

While cleaning the other day, I found a packet of pictures from our first year of marriage. In one of them I'm close to 20 weeks along with Gianna, it's Thanksgiving, and I'm proudly holding out my first-ever attempts at home made apple pie. My hair looks recently trimmed and is sleek and smooth. I must have had the time to fix it. My skin and eyes glow with expectation and well-restedness. To my now-wizened outlook I appear so young and fresh-faced I can't believe anyone let me get married, let alone have a baby.

"That person has no idea," I told Brad as I held the picture out to him. She has no idea she'll have to learn a new language and angst over chromosomes and retinas. She has no idea that people have cochleas and vestibular systems. She has no idea she'll be one day balancing the boisterous energy of a little boy with the unique needs of two very special little girls.

Gianna took a bad spill walking across our kitchen a couple of days ago. She tripped over one of Pia's push toys and when she tried to steady herself on it the wheels rolled out from under her and she slammed face-first into our tile floor. What would likely have been a mere stumble for a typical kid turned out very dangerous for her. Fortuitously, my cousin and his wife were visiting us the next day; Dana is a doctor and was able to take a look at it; she thought maybe it wasn't broken but even if it was, Gianna was breathing fine and not bleeding a lot so there would be nothing to "do" for it.

That evening I lay in bed worrying. Pia is 19 months old and not walking. Strangers are starting to comment on her size and age and asking with wrinkled brows, "She's not walking yet??" I've been pining for her to walk but now I'm scared. So many more falls in our future for my vestibularly-challanged girls. I felt tired and sad just thinking about it.

I thought of that girl in the picture, my younger, more innocent self and I'll confess to a moment of pure, unadulterated yearning. I wanted to go back there. I wanted to be in a place where the only weight I felt was the warmth of homemade pies, fresh from the oven.

The only thing is, that girl hadn't really loved yet. She hadn't walked through fire to pull her baby girl, soft and wet, to her chest. She hadn't had her first big fight with her husband or sat nervously in a hospital waiting room with him. She hadn't had a small, trusting hand nestled into her own or nuzzled the top of a toddler's head in a rare moment of stillness. She hadn't yet begun to learn the art of being grateful for each and every thing.

Would I really go back if I could? I am a different person now, with a different life, but it's because of love. Love changes you. This love that I choose to act upon, every day, brings me life. A life that has been filled to the brim with opportunities to give more, love more, change more, and discover, sometimes in spite of myself, true joy. No. I'm not going back.

2006
 "My cup overflows. Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever"
Psalm 23

Wednesday, February 19, 2014

Dreams

I've been wracking my brain trying to figure out how to blog with reliable frequency but I see now I've been going about this all wrong. I've been actually sleeping at night after staying up way too late watching the Olympics (love them and I don't care who knows it.)

I should write in the middle of the night! Admittedly it's not the middle of the night right now. It's 7 am and people are getting up for the day. But I've been awake since the middle of the night (4:45 is the middle if the Olympic coverage ended at 11:30 aight?) so here we are. Ironically this post is about dreams. It's ironic because no one had any last night. Because no one SLEPT. It was a whole show of nightmares and drinks of water and hunger that only a box of raisins could satisfy. Gianna banged her face up after a bad fall for the second time in 4 days this evening and the PiaBaby is getting 8 teeth in. I counted them. So people were needy needy. Even now, as I sit tapping away at this masterpiece the big kids are passed out but the P is still nursing away after 3 failed attempts to get her sleeping again. She ought to be a real gem at speech therapy this morning.

But I digress. I think. What was I talking about? Oh yeah, dreams. Brad was working late so I fed the kids from my perch behind the breakfast bar, as is my custom when he is gone. I like to eat my meals standing up with my loins girded or whatever. As they enjoyed night 2 of sauce, pasta, and meatballs the big two began telling me about dreams they've had.

Gianna dreamed her American Girl dolls came to life.

Dom said he dreamed he fell off the roof pretending to scuba dive like Jonathon Bird. He hastened to inform me that he wasn't hurt because he was wearing his bike helmet.

They then begged me to tell them a dream I'd had. I tried explaining that I don't really remember my dreams because tired (see above.) They found this unacceptable so I had to do the old "re-tell a strange pregnancy dream" trick.

"Ummm ok when I was pregnant with you, Gianna, I dreamed I gave birth to a puppy instead of a baby. I even tried to nurse the puppy. Grandma Mary Ellen and Daddy were in my dream but they were not worried even though the baby was a puppy. Then I woke up and thought...woah, that was so weird!"

Gianna was delighted, but Dominic nodded his head seriously and commiserated, with a shrug of his little shoulders, "Yeah. I've had that dream, too, Mom."

"Really?" I asked. "You dreamed you gave birth to a puppy and tried to breastfeeed it?"

"Yeah. Isn't that weird?"

Yep. It is.

Have a nice day. I might have one...there's coffee in my Anthropologie mug and Dom just came downstairs already dressed. He's not wearing underwear but who am I to judge?



Friday, January 17, 2014

7 Quick Takes

1. This commercial made me smile.
I love seeing his hearing aids taped on. I just...love it.

2. What is being done to harness the mysterious ability of babies and young toddlers to arise from a deep sleep when their mother either a) leaves the premises or b) creates for herself a cup of tea or coffee in a pretty mug, or constructs a plate of real food, to be eaten while seated at a real table, and enjoyed in glorious silence? Surely there is some way we could use this power to our advantage...at the very least shouldn't we be able to make money from it? This is America. We do that here.

3. Along the line of "other things I'd like to see leveraged," what about dried oatmeal as a building material? I've spent so much time painstakingly scraping dried oatmeal off my counter and mostly failing that I've come to question everything I know about construction (which is, admittedly, basically nothing.) You might argue that old oatmeal wouldn't work because small animals and bugs would eat it or the elements would strip it away but one good coat of shellac should do it, right?

4. Last Friday the Dom turned the big 0-4. Four is...not a baby anymore. Or toddler. An older, non-preschool attending pre-schooler is what he is. Even though I'm with him all the time, the fact that he keeps growing up surprises me.

5. His Lordship's cake



6. The sign on the front door for his party, which I left up all week and earned many befuddled looks from the FedEx delivery man and the plumber coming to inspect the sump pump.

Free-handed because..no printables up in here. Old school all the way. Also, I don't own a printer.
7. I'll admit to seeing the latest Hunger Games movie in the theater and then feeling compelled  to acquire a (p)leather jacket from the boy's section at Nordstrom Rack. Every time I wear it Brad asks me if "Timmy is letting me borrow his jacket again," but I don't care because sometimes a mom just needs to feel like a bad-ass.

See more Quick Takes over at Conversion Diary and stay warm this weekend!

Thursday, January 16, 2014

Ill-Advised

I love children's books. Good ones. I like to be snobby about them, and because of this I occasionally get my come-uppance.

For Christmas, my sister bought the kids this version of Rumplestiltskin.

 I remember it from when I was a kid and I love the illustrations. I can still hear the deep voice of my elementary school librarian, Mrs. Moore, a woman whose height and bearing was formidable, reading this to us. This story is, like all true fairy tails, incredibly bizarre and slightly creepy. Why would the miller lie to the king about his daughter's ability to spin straw into gold? Why was the miller's daughter never again asked to spin more straw into gold? Had the prince fallen in love with her enough to not care anymore? And most importantly, as Brad says, "What does it all MEAN???"

I don't know, all I know is that at the end of the book, after the miller's daughter correctly guesses Rumpelstiltskin's name, he gets very angry and screams, "the devil told you that, the devil told you that!" Would you like to guess which line from this story is most often repeated in public with great glee and volume? Yeah. The people at Nordstrom Rack really loved it, I could tell they want us to come back reeeeeeeal soon.

Ok, so, other people buying books for your kids can be a gamble, but one of my choices for Christmas also has me kicking myself.

I bought Dom the above title, plus many others by Steve Jenkins, after we'd happened upon this one at the library:
this book is fantastic, by the way

Included in "What Do You Do If Something Wants to Eat You" is a profile on the basilisk lizard, also known as the Jesus Christ lizard, because it can run on the water. After watching a few videos of this creature in action, the kids are hooked. Multiple times a day I overhear Dominic playing and narrating, "The Jesus Christ lizard is running on the water!!!" and every time it startles me because it sounds like he is constantly taking the Lord's name in vain.

You should buy these books; why miss out on all the fun??? Actually, you should buy them because despite the possibility of embarrassing content, they are good books.


Awkward Update: My sister texted my iPad and refuses to take any responsibility for Rumpelstiltskin. So. I'm not sure who bought it for us, but whoever you are, thank you, we love it. Even with the devil parts. Tell me who you are, and you can get blog-thanked.



Thursday, January 2, 2014

13 in 2013

January- The Dom turned 3. It was hard.

February- We purchased the 'Burban. Unfortunately it only got 10 miles to the gallon so Brad turned it into a Prius. I miss this car, in a non-materially-attached way of course.


March- Keeping warm playing in the basement.
April- Seedlings on the window looking forward to warmer days ahead.
May- Gianna graduates from Ohio Valley Voices

May- The next morning Pia has bilateral cochlear implant surgery
June- Pia hears for the first time

July- First birthday

August- Garden is growing

September- Gianna begins mainstream schooling at St. Gertrude's

October- Halloween

November- Playing trains with Uncle John and cousin Tom at Thanksgiving

December- Travel to Boston to see Dr. Berson and receive good news of minimal retinal deterioration for Gianna so far. Do we look like we're glowing?


 I can't say I'm all that sad to see 2013 get left behind. It was a rough year during which I feel like I spend a lot of time in a fog. But for now I can feel weight of Usher Syndrome lifting a little bit and I am ready to move out of crisis mode. I hope 2014 will be a year of less yelling and more sleep, more drinking of water and less anxiety, and more patience and less hospital time. Praying for all of you and your families for many joys and blessings in the New Year!

Also...maybe I'll figure out how to have less-ghetto pictures on here. Maybe not though. Thanks Dwija for hosting!