A New Me

Have you ever felt like you needed a change real bad?  Maura's birthday is in a few days, and this has, by far, been the most difficult year of my entire life.  We've come a long way baby...and we've got a long way to go!  But I decided I wasn't going to let it show...I'm going to show up at her birthday looking like a million dollars...and I started by getting about 7 inches of my hair cut off.

I never thought I could donate it, but apparently, I was able to!  When she said that, I said Take it!  I was going short anyway!  It's only hair, and it grows back!  My head feels so different right now.  It hasn't been this short in quite a few years, but it feels good to be back!

A Moment at the March!

Inspired by Amanda Soule, just a moment from our week, no words, just a picture, one to remember always.  I hope your week was just as special!

Our Visit to Holland

I'm sure many of you have read that story Welcome to Holland, but in case you haven't, take a moment to read it here. It might seem like my life is fairly normal, but the reality of it all is that while Maura hasn't had a seizure in over two months, she's far from your normal baby who is about to turn one.

Let me give you some perspective.  There are no baby gates in my house.  This is not because I'm so free that I let my child roam free.  It's simply because Maura isn't mobile enough to need them.  If the girl moves ten feet in an hour, I'm lucky, and that will be backwards at that.

Maura still sleeps in a cosleeper.  Yes, she's probably too big for it, but she doesn't roll or move around in her sleep at all.  She really isn't capable of it.  It's actually nice because she can still be so close to me without being in my bed...and considering she nurses half the night, I'd rather have her nearby.

Her crib? Where she currently naps on occasion?  It's still set at the highest setting. Maura doesn't pull up yet.  She can't possibly fall out of her crib if she doesn't even pull up to sitting, muchless standing!

Here we are, on the brink of one, and Maura isn't even crawling yet.  She only recently got enough strength up to pivot and roll from her belly to her back.  While it's nice to not have to worry about her getting into everything, we really are in Holland.  Someday she'll get there...until then, we'll enjoy the windmills...

The Greening

One of my most vivid memories last year in the midst of Maura's events unfolding happened when I left the hospital 5 days after she was born. On our drive home, I noticed something unbelievable. Everything had greened over while I was in the hospital. I don't just mean leaves popping through, I mean the undergrowth beneath the trees took on new hues of green. Life was beginning for yet another season, and while I spent my days inside the walls of the hospital, it all happened so quickly. It really was marvelous and breathtaking in the midst of some of the darkest moments in my life.

I even felt quite a bit sad last fall as everything turned and fell from the trees. It was as if Maura's season was ending. The leaves that emerged at her birth were dying, and I had a very difficult time accepting that. I felt like I had let the season go by in a blur.

So as I watch the greening happen yet again, the seasons weave into one another, I am very reminiscent of last year. It's happening earlier this year. In fact, it's happened already! I am often very sentimental about things, and this is no different. I remember where I was last year in my own head space, and I know where I am now: Things are getting better. It's a good feeling!

I remember sitting in the NICU a year ago and chatting with my cousin Melody - one of only three visitors we invited to the NICU - talking about "A year from now" and "around her first birthday". We said we'd do something special to honor our time in the NICU. So it was no surprise when they announced March of Dimes March for Babies nearby just 10 days before her birthday that we'd be walking for sure!

I registered at the end of December. It seems like so long ago, on the other side of the seizureville woods in February! I set my team goal for $500. Never did I realize the compassion that would come out of friends and family. I am overwhelmed by their generosity that allowed us to triple our goal! We raised over $1500!

I watched the weather carefully all week, and unfortunately rain was in the forecast. It did indeed rain, but luckily it was only a drizzle. The pouring rain held out until just after we finished our walk. Someone was indeed watching over us!

The Field Bag

The night before we left for the woods, I was panning through Amanda Soule's The Rhythm of Family: Discovering a Sense of Wonder through the Seasons. I like to read this book monthly as each month coincides. When I saw the field bag, I knew I had to make it for Patrick - right now! Nevermind that there was packing to be done, the boy needed this FOR camping! So I headed upstairs with a plan. Patrick would have his bag!



I started with a decorator weight cotton for the bag, and lined it with some fun frog fabric. Why not? It's outdoorsy! It was such an easy sew and so worth the effort. Patrick brought his collection of fun things with him to the campsite including his bug vacuum, his compass, a flashlight, and his whistle. I knew he'd appreciate the concept of it. What little boy who loves camping wouldn't?

The Friday After Easter .... One Year Later

As I got dressed this morning, I couldn't help but think about one year ago today. Well, it wasn't really TODAY, but with Easter in context, it was. It was the Friday after Easter, and it was your average day. I was still working. I'd been back to work 4 days and had 5 to go before my leave began. I was tired. I lost my momentum during Easter break, and it wasn't coming back. If I could just get through the following week - and NJASK - I'd be able to breathe.



Maura had other plans. I was just over 35 weeks pregnant. I headed to bed early, only to awaken a little after 1 am. I was bleeding...a lot. My heart sank. Joe was still up. He hadn't even made it to bed when I called down to him. We had to go to the hospital. I was having this baby soon.



This is where it all really began. It didn't begin in the NICU. It didn't begin at CHOP. It began in the middle of the night in my own house, where the reality of my placenta previa really set in: It wasn't moving.

The days that followed were full of uncertainty. We were tired, stuck in labor and delivery, and I had no idea when I was really going to have this little baby. Joe went back and forth many times that weekend, shuttling Patrick between family. We hadn't really planned on this.



As I look back on the last year, it's been a whirlwind...no..it's been a tornado. It's been the hardest year of my life. As we come full circle to Maura's birthday on May 2nd, my mind reels. I have joy for a beautiful special little girl, but I also have much sadness. I missed so much in the haze. As I process it, I hope that next year I'll report that I've come to terms with it all..and until then, I'll just take some time to snuggle that little one who smiles at me like an angel from above...after all, isn't that what she is?

We Took to the Woods

We took a little vacation last week. Joe had off and the weather has been nice so we decided to take to the woods for a few days. Patrick loves the woods. He finds his skin there, I swear he does. He never once asked about watching TV for the three days that we were away. His soul seems content in the outdoors in a way unlike any other place.



We went to Stokes State Forest. We rarely camp in New Jersey. It seems as if they don't really prioritize their state parks, but we wanted to stay close, but still get away. So we rented a lean-to, by their definition a small unfinished one room cabin with a wood burning stove. We were alone in the woods. The rest of the lean-tos were unrented. The trees were bare, and we enjoyed the quiet of it all.



We had campfires and roasted marshmallows, and ate outdoors. It was all a gentle reminder of the fun left to come as the weather warms this season!

Little Sewing

He has a love of gadgets that often has me telling people that someday, perhaps, he'll be an engineer. He fiddles with gears and tries to figure out how things work. So it's no surprise that he took an interest in the little sewing machine I had stashed away in my studio space. It was just his size. He played with the pedal and the buttons on it for quite a while before I let him work with me on a small project.



When I asked if he wanted to make a pillow, his face lit up. To be honest, I wasn't even sure if the little machine worked. We gave it a shot anyway. It made it most of the way before it jammed up pretty good on us. It seems like a simple task - a basic pillow - but to the boy, it meant the world. I was sharing a love of mine with him. That meant the world to me!



We sat together and we sewed this little pillow. We finished it up on my real machine upstairs. He helped me stuff it and pin it closed. This was his project - his first sewing project. Can you tell how proud he is?

Maura Never Cries...

Maura never cries...I'm sure you've heard me say that before. Really, I'm not kidding. Maura doesn't cry! When we were in the NICU, I'd sit for hours and listen to other babies cry. I'd secretly wish that Maura would cry. There were even "seizures" that were documented because if she cried, it must be a seizure. She never cried because she was hungry or tired or wanted to be held. It was rather a running joke for a while, but in all honesty, it's rather stuck! Maura doesn't cry!


She's very vocal and she'll yell, but outside of toppling over and wacking her head on something, Maura never cries. Maura also never laughs....mostly... You see, we aren't really sure why. The meds she takes could "numb" her down a bit. It could be her general demeanor overall, but to get Maura to laugh, you really have to work. You have to lay her down on a soft surface and grab her feet and bounce into her and really jostle her or you have to dig into her sides to hit some tickle points really deep down inside JUST to get a chuckle out of her...so the very idea of her rolling in laughter is something that purely doesn't exist.

Does it make me sad? Yes! But I remind myself that she's just about the HAPPIEST baby anyone could wish for. She's content. She smiles all the time. She flaps her arms like a little bird when she gets excited. She just doesn't laugh...

....except when she's on the swings. When she's on the swings, she laughs every single time she comes towards me. I love to watch her swing because its the ONLY place I can get her to really really laugh. I caught it tonight on video, so I can look back at it and smile whenever I want. Maura giggled tonight...more than just a chuckle, an outright giggle, and I'm overjoyed about it.

Maybe someday she's just lay on the floor and roll in laughter at something her brother does, but for now, if the swing is the only place I can really get her to giggle, I'll take it!

You put your right foot in...

Have I ever mentioned that I used to go to summer camp? It was a great camp...Camp Johnsonburg. They were associated with my church when I grew up. I have the fondest memories of my weeks there as a child, but perhaps the I am most fond of the songs I learned at camp.

Joe likes to say that I am the one who knows all the camp songs. Well of course I do! Every meal began with a song. I'm not talking about Amazing Grace or something else equally as religious...I'm talking about downright fun silly songs like Head, Shoulders, Knees, and Toes or My Name is Joe. I often sing them outloud and Patrick is starting to catch on.

So it wasn't uncommon for us to get up after dinner tonight and sing some of those camp songs. He loved every bit of it. He sings along with me too! He's really good at Little Bunny Foo Foo, complete with hand movements! Today, I taught him the Hokey Pokey. It's so much fun to pass a piece of my childhood on to him!