Wednesday, May 8, 2013


What is a toddler, anyway?  Is it, by definition, just a child who toddles? Is it a child over the age of 18 months and younger than, say, 48 months?  Is it, say a child who throws tantrums? Shouldn't those be a part of the definition of a "toddler"?

I have two toddlers.  One who doesn't toddle and one who does.  One who throws  tantrums and one who throws pasta.  Both 18 months.  Both having very unique needs.

My toddling toddler needs activities and freedom to keep her from boredom and satisfy her epic and unending curiosity.  My pasta throwing toddler needs support, structure, guidance, and a lot of hands on direction to keep him progressing and focused on moving forward. 

Those are two very different places to be with two 18 month olds. 

We bought a book at a yard sale for $.25, after making friends with the couple who was selling it because they're new neighbors and I heard that they like booze, called "The EVERYTHING Toddler Activities Book".  I flipped through the pages and thought "Grace would love this, Grace needs that, Grace would be so funny doing that...But...".

"Nope, can't do that- he'd eat the cotton balls."

My non-toddling toddler has a bit of an oral fixation.  We can't play with anything that isn't completely safe for chewing or ingestion.  Which is all good with me, who wants paint on their carpet anyway?

We'll get there- figuring out this whole two separate levels of needs and activities.  We'll find a way to maximize those two hours after work to include activities that are exciting and safe for both of them and each of them separately.  We'll figure it out.  Right?  I have this intense anxiety about "fair but not equal". I thought about that quite a bit before they were born actually, never knowing just how important it would be.  I spiral a bit when I think of how focused I am on Caleb and whether Grace is getting enough of me. And then I spiral a bit when I think about the play time I spend with Grace and whether the things I'm doing with Caleb are good enough.  Is he missing out? Anxiety is the name of the game. And then, so is eating soap crayons for both of them. So, well, yeah- it's all a crap shoot.

What is pretty friggin adorable is Grace's newish desire to "help" Caleb.  She will take him his sippy cup full of "medicine" (Miralax) to hold to his mouth.  Takes a little practice to keep her from shoving it in his face, but she's a good helper. 

And then Caleb helps Grace, too.  She watches him and tries to mimic him- he's a champion chair rocker- he can get his high chair to scoot across the room by rocking back and forth.  He thinks it's hysterical and so does Grace. She'll watch and try and then watch some more and try again. It's pretty cute that she can't figure out how to do it like him, she just sort of throws herself back into the back of the chair over and over, laughing and watching some more.  Caleb will stop to look at her from time to time- I'm guessing he's thinking to himself "C'mon, it's not that hard, toddler!".

Oh, and he helps her finish her dinner on the regular.

Here's a little video that the nanny took while we were at work today. It's so nice to get a glimpse of their days like this. :)

In case you can't see it above:

Sunday, May 5, 2013


::Walks in with head down, kicking the dirt beneath her pigeon toed feet::


I'm so sorry.  I have no excuse for this absurd amount of time gone.  We have been busy, sure. We have been adjusting, sure.  But we have not fallen off the face of the earth. We are still very much alive.  And doing well.

So my apologies for leaving you all so suddenly, with such a sad little post, and without any further explanation.  I'm home now. It's so, so good to see you again.

Here is what I know:

Fact- Blogging was my escape and my reality.  It was my place to breathe and my source of support. Blogging was my outlet and my hiding place.

Fact- I may have gone a little bit more insane during my hiatus for not having you.

Fact- I couldn't bring myself here. I just couldn't do it. I thought about it oh-so-many-times. I thought about all of you so many times. I checked in often, but would go months without actually opening a blog, too. It was dreadful, but incredibly necessary.

Fact- I feel like the ground is a little bit more stable now. I think that I can take a step without collapsing and I'm so glad that I have this place to come begin our new journey.

Here is what I don't know:


Our world is constantly evolving, as is my reality within it.  I have two beautiful children (that's a fact) who change literally every day and are growing in their own incredible ways.  I have absolutely no idea what tomorrow will bring.  Literally, I'm sorta on the edge of my seat (and sorta ready to hide under the covers some days). 

A few more things that I'm fairly certain of...kind of:

Grace is feisty.  Little Lady has taken on a new found independence like it's her God given right and she's rocking it every single day.  She's all about picking out her own outfits and putting on her own shoes. She's all "put me down" and very little "pick me up" nowadays.  She's full of food strikes and beverage demands. And she's the sweetest little thing you've ever met. 

She doesn't really like strangers and will take the opportunity whenever around someone new to pull the "pick me up now, Mommy" card. The "I was just kidding when I said I wanted down...this person is SCARY!".

She warms up after about twenty minutes and will give you the most hysterical and precious "cheeeeese" face you've ever seen (sometimes complete with the "cheeshe" sound to go right along with it). She will bring you a book and ask nicely for you to read it. Then she'll sit in your lap and flip the pages too quickly, excited to see any new animal she can point out for a vocabulary lesson.

She walks around with her hands up, shrugging her shoulders, when she can't figure out where her baby doll/stuffed strawberry/grocery cart/sippy cup is, begging for just a little "hep" in finding it. 

She loves to dance, swinging her arms front and back, clapping a bit, bobbing her head, bending her knees, and most definitely shuffling around to the beat (that's usually in her own head). Always with a huge smile on her face. 

She runs like a girl...or like a toddler.  Hardly picking her feet up off the floor but somehow incredibly speedy.  She "jumps" by bending her knees and then straightening them out again- grinning from ear to ear.  She climbs on literally everything. She sits in "timeout" for a full minute without getting up (most of the time), and will cry for about twenty seconds of that sometimes. 

She knows signs for way too many things- sometimes things I don't know.  She asks for horsey rides by signing "horse" and then climbs on my back and holds on tight while I ride her around.  She dismounts with is that possible?

She stopped liking most of the food she liked three weeks ago, but will eat cheese almost any minute of any day.  She drinks a ton of milk and could eat goldfish for breakfast, lunch, and dinner.  She also enjoys waffles quite a bit.  Carb loading, obviously.

She sleeps through the night, most nights, unless she has a 104 degree fever, which has happened a time or two since I've gone.  She has six teeth and will sort of let me brush them.  She is in the 85% for height and 50% for weight.  She HATES the doctor's office and screams her head off as soon as we get into the room. She still takes a binky for bedtime...and when at the doctor's office.

Oh wait, she takes three binkies for bedtime.  Won't sleep without three.

She loves bathtime almost as much as her brother and she adores her Nana and Papa. She loves dogs, particularly their Great Dane, Dozer.  She loves her cousins, Kate and Everett.  She will help clean up her toys every night.  She cries when she gets "in trouble" and she runs around screaming full sentences all day that no one can understand.  She says Mama and Dada all the time, and up, go, bubbles, cheese, Nana, Papa, "I Love You" (Ioowwuh), and then every other word sounds like some variation of Dada.

She is lovely.  She is my heart.  She is exhausting. I couldn't love her anymore.

What else do I think I know?

Caleb is charming. Literally, he's like some sort of lady killer or something. He stares into their soul and then hooks them immediately.  I've never seen anything like it.  The boy has some damn good eye contact.

He also has cerebral palsy, microcephaly, and a thin corpus callosum. We truthfully don't know what any of this means.  Neither does he, and he could give a rats ass about any of it.

He has made HUGE progress in the last 10 months.  We have another baby of the same age to compare him to, so if you're looking at Grace (and "normal" for 18 month olds), little dude is super behind.  He doesn't have any words.  He can't walk.  He doesn't use a pincher grasp. He doesn't utilize "purposeful play" very often. His head hasn't grown since he was maybe ten months old. His feet don't work as they're supposed to and he turns in on his inner ankles.  He is regularly constipated.  He has a consistent rash around his face from his drool.  He doesn't show stranger danger. He chokes on food from time to time and doesn't swallow thin liquids correctly.

He DOES crawl correctly (and quickly), pull to a stand, cruise on furniture, and walk behind push toys and with help from Mommy and Daddy.  He does sign "More" and "Food"! (Just learned these for the first time last week!!!) He does feed himself with a raking grasp and pinch food if guided. He holds his own sippy cup and chugs it all down. He does babble all kinds of consonants like M, D, B, G, F, H, L, R.  He does throw a ball and turn pages in a book.  He does have separation anxiety. He does love his sister and wants to be around her all the time. He does cuddle like a freaking rock star and sleep through the night most nights.  He does laugh ALL THE TIME and smile like a baby model.  He does capture the heart of anyone who meets him (unless you're a bad person, he can sense it- I'm sure of it). 

Little Man is a giant kid.  He's about 30lbs and is in the 98% for height and 95% for weight. He is below the first percentile for head size.  He has all of his teeth but his two year molars, and I honestly lost count- how many is that? He eats almost anything and now that he signs "more", he will eat for hours if I let him.  He had his first hair cut a few weeks ago and looks friggin dapper.

He usually has a stomach ache and spends a good amount of time curled on the floor gripping his tummy.  He is on miralax (large amounts) right now to try and avoid further invasive measures.  He has Occupational Therapy, Speech and Feeding Therapy, Developmental Therapy, and (soon) Physical Therapy every week for an hour each right now. (We are between PT's so he hasn't seen one for several weeks unfortunately) (We are also in the middle of shifting our Early Intervention model to a team based model in our state and it's a hot mess of a disaster right now).  He is an incredibly hard worker and usually gets through all of his therapy and extra work without much fussing.  He has a smile on his face through most of it and just.keeps.trying.  It's inspiring. Truly.

He makes me want to be a better human being.  He makes me want to cry sometimes.  He deserves the world. All of it.  Everything.  He will have a much harder time than I like to think about and he will have to fight for almost everything.  He has it in him to do it.  For that, I am so intensely grateful.

I will freely admit that I'm not cut out for this.  I don't think anyone is.  That whole thing about "you were chosen to be his parents because you can handle it and because you're what's best for him" thing is hard to swallow.  There's some truth there, I think.  And then there's some rainbows and glitter covering up the rest of it.  The truth is, Caleb is my son. So none of the rest of it matters.  He is my heart, just like his sister.  There is no other option but to be everything I can for him.  There is no other option but to be perfect for him.  I fail at that every single day, but I wake up every morning trying to be perfect for my rock star son and my beautiful daughter and that's ok. 

Sometimes I want to hide under the covers.

But I keep trying.  There are a lot of dark times- I'm waiting for those to disappear maybe? Get brighter? Fade a tad?  I think about what next year will bring, and the year after that.  And then I think about what teenage years will be like for Caleb.  And then adulthood.  The questions and the doubt are so strong in those moments of thought.  Like I said, it's a dark place. Nearly void of hope or faith.  Usually saturated with self pity and then horrific guilt.  Then covered in worry and literally engulfed by depression. 

Then I get out of it.  Somehow, by the true grace of God, I get out of it every single time.  I escape that dark place and find the sheer light in my amazing son and his incredible sister.  I remember how lucky I am. I think about B and how the hell I would do this without him.  I think about my Luckies. I think about the obstacles we all went through to come out on the other side. This shit doesn't just happen.  It takes an absolute miracle just to bring a baby into the world, let alone two at once.  There's not a part of me that thinks "we" did this on our own, us and modern medicine. There is a reason for everything and I'm finding little pieces of it here and there every day.  As long as I get out of the dark place, I find my reason every single day.

And yet, in all of it, this is so incredibly hard.  It's like a never-ending nightmare sometimes, I'll be honest.  No one, NO ONE, wants to wake up to know that their child has special needs.  No one wants to wonder if he will speak or learn to write or understand math.  No one wants those questions for their child.  Everyone wants to say that "he can do anything".  There are so many of us who can't decide whether we can say that to our special child and that is nearly debilitating as a parent.  Speaking for myself, it's the hardest thing I've ever done- knowing that he will struggle for everything. Just having that knowledge is the hardest thing I've ever done. And it's won't go away.

He is perfect. Truly beyond anything I could have imagined.  Take that U-turn and marinate in it for a minute.

So, there it is.  Here we are.  We are so very much alive and well.  There have been a few other things going on...a few more lame excuses for my absence...

1. We moved.  We moved out of our first home in January and into my parent's rental house so we could sell our house without having to show it with two one year olds.  We bought a new house about 40 minutes south, less then five miles from my parents and within about a mile from my brother's house. We moved out of the rental in April and into our new home. It's been a whirlwind. Our commute is a nightmare but luckily we carpool to work so that helps.  We also bought a house that's almost twice as big for a little less than our previous monthly mortgage payment. Not too bad! I love our new house and all of the space. The backyard is beautiful and the pool is just calling our names- but it's still a bit chilly. Give it two weeks and then we're IN!.

2. I got a promotion at work in October.  Yay! And UGH! It's a great opportunity with a ton of extra responsibility and a lot of weight added onto my shoulders.  Not great timing with the whole adjusting to mommyhood and cerebral palsy and moving and all. But I'm doing the best I can.

3. I'm "studying" for the series 24 licensing exam. I work in the financial industry and this exam seems like a bitch. When I say "studying", I mean that I took a two day class and have opened the book approximately five times. I haven't set the date for the exam yet because I'm terrified and completely unmotivated to do what it takes to pass.  Again, bad timing.

4. I started another blog. I know, I'm a traitor.  I started it actually in December of 2011. I wanted to capture the kids first year in a blog for our family.  It's not anonymous and there are pictures of us all over it. I did a blog every single day in 2012.  It started out as a project, seeing how much I could blog and then I just kept doing it and decided to take a picture every day that year and post about it. I ended up taking thousands of pictures. It's amazing to be able to look back on everything that happened, especially because it was a tough year in many ways...oh, and because the first several months with newborn twins is straight survival mode and I think I blacked out more often than I should admit. If I didn't write it down, I'm certain I would have no memory of actually pumping for their first five months. That was a crazy time.  In any case, I stopped blogging on that blog a few months ago when we were going through the move and things were too unstable.  But, to be honest, the whole time I was blogging there, I was thinking about coming back here and needing you.  We decided early on in that blog that we'd make it into a book for our kids, so there was some censoring going on.  I needed this place to let it out.  I've missed you.

5. Did I mention my kids turned one? Yeah, that was cool.  They're pretty cute little human beings and they're even cuter covered in icing. It's like a weird universal truth.

All in all, it's been busy.  It's been an adjustment.  We're getting there.  And we're happy.

I hope that you come back.  For those who have gone to new locations, I missed you.  Can you give me your new spot again??? I want to come see you again! Email me if you can't leave it on comments.

Here's a whole lot of squishy baby/toddler love to make up for all of that time away:

Some time around 10 months:

Early speech therapy!

One Year Old!!!
We did a prince and princess theme.  Couldn't get Grace to wear her crown for very long...

Opening presents!

The inevitable icing shots :)

Grace was pretty excited about her new toys!


Off to a sprint...

One year photo shoot

Too much Christmas fun!

In my parent's rental home, bye bye first house!

Getting close to pulling up all by himself!

It's a lot of work :)

Signing "Pleeeease" read to me!

New innovative ways to eat.

Drama queen

He got it! Pulled up for the first time at 16 months




Pulling up

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At our new home! April 2013:

Liking her new backyard

Still loving his big bear

Doggy ears


Throwing this one in there cuz I was super proud of myself. For my 30th birthday, we had my family over for cocktails and I made these cute little appetizers :)  Tasty too!

This was a bad day.  Caleb had his second seizure (we think) the night before, so we were doing all kinds of tests that day to make sure there was nothing else going on...and then Grace spiked a 104 fever that afternoon.  Oy! Just a nasty virus.

Showing off his new Superman foot braces and new shoes!



Signing "Food"

Going for a drive to the park

Making sure Caleb doesn't ingest the wood chips is my least favorite part of the park...

Pretty lady

He learned to clap on command!

Climbing in

Standing with only one hand!

Investigating a caught lizard


I hope everyone is doing well!