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! 


  1. I am so very glad to see this update from you! I don't blame you for taking a break (would probably have done the same as you if in your shoes) but always hoped you'd come back x

    You are doing amazingly well! I have volunteered on several summer campa for disabled teenage girls and in that time cared for two girls with cerebral palsy, one with multiple disabilities whose only way of communicating was waving her arm for "yes" and a girl with prada willi syndrome. Each time I have been amazed at both the girls' strength, courage and sheer love of life despite their difficulties and also their families' ability to cope. Every time I have thought, "I don't know how they do it!" And I think the same of you... I don't know how you do it, so just the fact you're still here, pulling yourself out of the dark spaces time and time again, is amazing and testament to how wonderfully well you are doing!

    I am so glad to see that you have already started lots of therapy for Caleb... Great to get going from such a young age! And so wonderful to hear how both he and Grace are developing!

    Way to go with your promotion at work! And how fantastic that you found a bigger home for auch a good price!!

    I'm still blogging at http;// the biggeat thing you will have mssed is our decision to remain a one child family. I am still struggling with hormonal sickness and there is no way we could survive another pregnancy (a recent stomach bug has reminded me of that big time!!) We considered adoption but decided we had to accept that remaibing a one child family is better for us all with my long-term health... Though we have said that when Oscar is older we may consider fostering. Other than that things are pretty much the same I think... I now work part time, am still writing the HG book and have difficulty balancing my time with just one child, so no idea how people balance their time with two!!

    Thinking of you, as always! xx

  2. Wow, what a crazy, intense, whirlwind 9 months you've had!

    First off, the pics of the kiddos together - especially the one of Gracie standing on Caleb's back to see out the window??? Frickin hysterical. I love that twin bond. :)

    Beyond that, I cannot imagine the fortitude and inner strength you have had to find since finding out about Caleb's Dx. I don't really like the whole "God doesn't give you what you can't handle" BS - it's just not true. Some people get dealt a shit load of crap, and it's just not fair. Beyond that, though, I know that you are a strong woman and a wonderful mother, and you will obviously do everything in your power to help Caleb live to his fullest potential. He is lucky to have you!

    Good to see you back around here hon - thanks so much for checking in. I hope you become more of a regular again.

  3. So glad you are back!! It sounds like you have definitely been busy - moving by itself is so stressful, I'm not sure how you handled a promotion and medical challenges. You deserve a spa day woman!

    Both kids are so cute! They obviously love each other so much and are so lucky to have a mom who loves them so much.

  4. Thank you for coming back! I check in every couple of weeks and feel sad not to have seen an update and then surprise this morning an new entry :) So glad to have heard from you, the Children are perfect! and you are doing great!

  5. Seeing those two smiling faces made my day this morning! I'm so glad to see you back and hear how you all are doing! I can't imagine the journey you've been on but oh, it sounds like you're just handling it magnificently (even on the days when you do pull the covers over your head - you are human after all) :) Also, the wood chips at the park? What brilliant playground engineer thought that was such a good idea anyway!? Those things are razor sharp, I can't imagine a kid swallowing one! So yah. Feel ya on that one. Anyway, again, so good to "see" you, congrats on the move and the promotion (busy lady) and many positive thoughts coming your way for strength and peace as you continue to navigate this journey with Caleb.

    PS I did move my blog to wordpress so we're at now.

  6. Caleb is wonderful, beautiful and perfect! Thank you for updating us...I've thought of you guys often and check your blog to see if you've updated it. One of my personal good friends (not a blogger) has whom has cerebral palsy. I'm sure you've already found a lot if support but if you'd like to speak with her...just let me know. I know she'd be more than happy...she's very sweet! Just let me know..... Schellkrista @ -Krista

  7. You ladies are amazing. Thank you for sticking around, for not giving up on me! I'm BACK! :)

  8. Yea! So glad to see this update. There has been so much on your plate over the last several months! You guys have been busy, busy, BUSY!

    Seeing your two makes my heart happy. There is such joy on their faces! Love it!

  9. Hello! Amy Grainger Hales introduced your blog to me. I am an IVF mom to twin boys born at 24 weeks. My son Jonah has multiple issues including Cerebral Palsy, seizures, etc. My boys are now 5 but I remember the first few years where by far the most difficult. If you ever need to talk you can find me on FB! Carry on super Momma!

    Michelle Hanna

  10. So great to hear from you and see all of these beautiful photos of these kiddos!!! :) I love all of them but my favourites are of the two of them all dressed up in the wagon, them in their high chairs and that last one. Just love seeing them interacting together. It sounds as if you have had a lot going on and a lot to deal with but I think you are doing an amazing job with the cards you have been dealt. These two are so lucky to have you as their mama. Look forward to hearing more from you soon!! :)