Nanny Cam??

I have no nanny.  I probably never will.  Nor do I want one.  Housekeeper, yes.  Who wouldn't want someone else come in and clean up their messes so that they could go breezily through the day enjoying the things that matter most? 

I want a nanny cam despite all this.  Why?  I want the irrefutable evidence that Cameran does smile.  She does.  I swear.  A lot more than when she was younger.  I will admit it took her until August to master the smiling in response to someone milestone, and even then it was sparse.  But now--now she smile frequently.  Sometimes they are small, goofy, lopsided smirks, and other times they are huge, light up the room, open-mouthed smiles.  Where is the proof?  Not on any of the following pictures that are a montage of her first 11 months.  Okay, I lied.  There are two-maybe three-smiley pictures...

 Jasmine loves to babysit.

First "on purpose" smile to Grandma Gerber.

                                 Zonked after the Buddy Walk.

Don't all kids have two Halloween costumes???

Christmas morning at Pappy and Nanny's house.

Cameran's favorite cousin, Scarlett.

Mama

I am not quite sure if it was intentional or not, but for the first time, at 11 months and 3 days old, Cameran said "mama".

I should mention that she is sick and on about three different meds right now, but in the middle of some good old fashioned nose suctioning, she was screaming bloody murder, paused and out popped "Mama".  No "ahma" or "maa", but a very distinct "Mama"...followed by more tears and sobs! 

The best news is that my mom is here as my witness. (Ryan never believes me when I say things like this.  I think he is just jealous. lol)

Yay Cameran! Now go and feel better!

Front of the Class

I was just commenting on another blog and it reminded me of the movie Front of the Class, that my 7th graders just watched a while back...




Just two weeks ago the middle school where I teach showed the Hallmark movie, Front of the Class to our student body. It is about a boy reflecting on his life with Tourette Syndrome. The movie hit me like a ton of bricks. First, we showed it theday after a friend happened to pass me the link to an amazing blog of a mommy whose new precious gift has Ds.  This woman is amazingly gifted in photography and writing and the blog entry I read was her daughter's birth story.  She too found out after her daughter was born.  Anyway, so flashbacks of Cameran's birth and all of my similar raw emotions were replaying in my mind, so I was already an emotional wreck. Second, it has such a powerful message that I cried--sobbed--through the majority of the presentation. At one point the boy sitting in the back of the auditorium looked at me and asked if I was okay and if he could get me a tissue. I thanked him and said I would be alright.


Flashforward to my first class after the movie when we were expected to having class discussions and reflections about what was viewed.   I called in my team's Learning Support co-teacher to lead our discussion because I knew I couldn't make it through discussing the movie without breaking down once again. (Not only is our LS teacher great with his students, he is also a pseudo-uncle to our daughter as we are family friends.)  See, there are pictures of my daughter ALL around my classroom. I had not told my students about Cameran having Ds because they do not need to know. She is my daughter. Period. BUT...there was something magical about that movie that made it okay. With the help of the other teacher we educated my classroom of regular education students about how some disabilities are easily seen, like the man with Tourette's, while others are not noticeable on the outside, such as someone with a learning disability. We talked about how the words they use, esp. use of the "r" word as slang, etc., may affect someone even if they do not realize it. At that point I passed out pictures of my daughter to each row and began my story. Our story. I told them how I worry that she won't be accepted by everyone as she grows older, and how she is like everyone else, but you can see her difference like the man in the movie. And it felt good. And I cried all over again, completely defeating the purpose of having that additional teacher in the room with me, but they connected. One girl raised her hand and shared that when she and her parents saw my husband and daughter and I in a furniture store one weekend, her mom has noticed that "something was different" and that Cameran was a beautiful baby. People understand. Good people understand. And you know what? That room of 7th graders now understand that all ANYONE-disability or not- wants, is to be accepted.

Goodbye Sanity...Hello Lent!

            Goodbye Love Affair...

I am not actually kidding when I say I am going to lose my mind for the next 40 days.  These coffees are what bridges the gap between waking up insanely early to let the crazy dogs out, to going back to bed for an hour, to waking up and getting ready for work, getting the baby ready for daycare, dropping her off at daycare and driving to work.  I go into the local Sheetz and they sometimes will start making it before I program it in their computer.  40 days of withdrawal.  40 days of no frappaccino.  What will I do? I assume I will survive.  It is going to be a sheer test of willpower.  Kind of like saying that at least one meal a day is going to involve salad of some sort.  It's like if I type it on here and there is the possibility of someone reading this, then I will actually possibly be held accountable....

On another note. Cameran's PT has only been going on for about a week now and already she has gone from not sitting up to sitting up for about a minute.  In our world this is huge!!! I am so proud of her.  Per recommendation of the PT we purchased a First Years portable high chair.  Not to use to eat from (although it works quite well) but instead, to practice sitting up in.  Cameran still does not have much motivation to reach out and grab for toys.  We are working on placing different textured toys on the tray within her reach.  So far she is reaching out and touching some of the toys, now we just need to work on grasping.  But like the PT said, gross motor before fine motor.  AKA: a test of patience (in a good way).  All of her accomplishments are that much sweeter when they finally do come.  We were so excited by her amount of progress that we went out and bought two more portable high chairs!  One for daycare and one for Pappy and Nanny's house!

ENT appointment on Thursday.... until then....

Cameran is a much happier RELAXED child when she is inside. Forget this snow; she is not a fan. We have been snowed in like much of Pennsylvania and surrounding areas for two days now. Drifting is pretty awful, however we are fortunate to be in an area that plows well. So well, in fact, that Ryan is already off to the store. (Albeit to purchase necessary ingredients for a neverending poo cocktail prior to tomorrow's colonoscopy.) Either way...We breaking outta this joint! I am feeling the need for a coffee. A real coffee. From Starbucks or Panera Bread or Sheetz. Don't care. Just want one. So after this post I am going to finish getting ready, gather my things, pray the snow finishes melting off the car, and drive!

Appointments

Appointments are always a good time. I say that somewhat seriously and sarcastically. When we go to one of Cameran's many appointments, be it pediatric, cardiology, Ear Nose and Throat, or opthamology (today's appointment) we always leave learning a little more about Cameran's development. It also leaves me with worry.

Case in point--we left the opthamologist, who by all accounts said Cami's glasses are working and she likes the progress that has been made. Just to be followed by Has she ever had an MRI or seen a neurologist? Hello!!! Way to freak out a mother who has to drive home in the beginning of snowstorm! Now rationally I know that she can not see inside Cameran's eye so it makes sense that the neurologist is the specialist who does this. And then she talked about how it wasn't necessary yet because Cameran would have to most likely be "put under" since she is so wiggley. (She is VERY VERY EXTRAORDINARILY WIGGLEY!!!)

Anyway, overall thumbs up to this appointment. Now we need to make it through another 12-18 inches and brace ourselves for the upcoming Ear Nose and Throat appointment. The fun never ends!

The Climb

Darn that Miley Cyrus girl. Every time I hear "The Climb" I think about little Peanut and how she is always going to have another mountain to climb. I guess that is all of us though, right? Each and every one of us has our own mountain to climb; some are just tougher than others.

Today was P's first session with the Physical Therapist. Suffice it to say she was pooped. I have never seen her sit up straighter and more proud looking than she did today, all while on one of those exercise stability balls. Needless to say, when she was finished she was zonked! I have never seen her fall asleep so fast! Tomorrow when she wakes up she is gonna be hurtin (although we were teasing her saying it was early penance for all of the shoveling we did over the weekend during the snowstorm).




Here are the words that get me every time (although I wish it was by someone cooler than Miley, no offense ;)

The Climb

I can almost see it

That dream I am dreaming

But there's a voice inside my head saying

"You'll never reach it"

Every step I'm taking

Every move I'm make feels

Lost with no direction

My faith is shaking

But I gotta keep trying

Gotta keep my head held high

There's always gonna be another mountain

I'm always gonna wanna make it move

Always gonna be an uphill battle

Sometimes I'm gonna have to lose

Ain't about how fast I get there

Ain't about what's waiting on the other side

It's the climb

The struggles I'm facing

The chances I'm taking

Sometimes might knock me down

But no, I'm not breaking

I may not know it

But these are the moments that

I'm gonna remember most, yeah

Just gotta keep going

And I, I got to be strong

Just keep pushing on

"Cause there's always gonna be another mountain

I'm always gonna wanna make it move

Always gonna be an uphill battle

Sometimes I'm gonna have to lose

Ain't about how fast I get there

Ain't about what's waiting on the other side

It's the climb, yeah!

Repeat Chorus

Keep on moving, keep climbing

Keep the faith, baby

It's all about, it's all about the climb

Keep the faith, keep your faith...

Welcome to Holland...Gerber-style.

This is a wonderful essay written by Emily Perl Kingsley. It was shared with Ryan and I by one of the many doctors we saw in the weeks after having Cameran. I am so grateful to be able to look back and see the outpouring of love and compassion we encountered from family, friends, colleagues, and doctors.


The essay is called Welcome to Holland

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip--to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas of Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

Here are a few glimpses of my short time in Italy before being rushed to Holland...

In fact, my trip to Italy lasted all of two days. That's right. Two days. And on the morning of the third day, alone in my maternity room with my new most precious gift, my course was altered with a few words from the attending pediatrician. A question. First, the good news. "Your daughters jaundice is improving." Then, "You may want to sit down." And I sat. "Has anyone suggested to you that your daughter has some mild characteristics consistent with Down syndrome?" Good one doc. Way to wait until a brand new mother is alone, on no more than two hours sleep, still recovering from the side effects of morphine from the emergency c-section. "No," I say, trying to keep my voice steady as I clutched Cameran Leah Gerber, my perfect little miracle baby, close to me. And he told me that he wanted to run some blood tests, and they wouldn't be available for two weeks. He left, with Cameran, to test her blood and change my Italy to Holland.

I cried, sobbing, and convulsing, trying to figure out who to call or what to do. Ryan, my husband, was at work that day, and my parents were coming in the afternoon. I called Ryan. At work. And after telling him that our perfect precious gift might have Down syndrome, he told me everything would be okay and he would be there as soon as he could. But for the rest of the day, people congratulating him just wasn't the same. It was supposed to be his proud papa day in the sun, and my phone call altered everything. I just couldn't even KNOW the possibility that our Cameran, the child we worked so hard to conceive, might have DS on my own. Someone else had to know with me.

While I waited for Ryan to arrice I cried. And I questioned. Why God?? Why, after trying for over a year, and seeking out fertility options, even taking out a loan to undergo IVF, would you let this happen? See, the irony is that we were so excited to get pregnant on our own, that we decided not to undergo any prenatal testing. It wouldn't have changed anything. We would never have an abortion, and would love whatever little being God gave us, right?? Never, ever EVER in a million years thinking that a 27 year old mommy to be and a 29 year old father to be would have a baby with a genetic condition. WRONG. I no longer wanted visitors. I was exhausted. Trying to be cheerful and happy, knowing what I knew what exhausting. Reveling in whether or not to tell visitors the looming possibility was exhausting. I was exhausted. And yet I survived.

And so, yes, Cameran Leah Gerber entered the world on March 21, 2009, weighing in at 5 lbs 15 oz and 19 1/2 inches. And she was perfect--is perfect--for us. I couldn't say that for the first two weeks after having her. Her DS was ALL I thought about. But I also thought about how everyone said that WE were chosen to be her parents for a reason. What could be more perfect? A teacher and a counselor. And they were right. She is even more special than I could ever have imagined.

Am I a perfect mom? Heck no.

Did I think horrible thoughts such as hoping the doctors had performed a switcheroo in the nursery and that my perfectly typical baby would be brought to me soon? Yes.

Do I still have "Why us?" moments. Yes.

Do I get jealous when I see friends and family with their "typical" babies, developing normally, being able to look at normal growth and developmental charts knowing their children are meeting or exceeding the expectations. Yes.

But then I hear Cameran's coo, or smell her breath, or breath in her scent, and remember that I wouldn't trade her for the world's most perfect baby. She is our lil Peanut. Our lil Peanut Butter. She is our Holland. And we are going to learn and explore all we can about her and cherish each moment doing so.