I Know You

June 25, 2013

I know you.

When Cammy was 14 months old, she and her cousin, Olivia took a music class at the Old Town Music School in Lincoln Square. For just $130 (ha!) for 8 classes, every week Erin, Olivia, Cammy and I would go to the Wiggleworms class. Trying my best to put a smile on my face and pretend to have fun, each week I dreaded it and hated being there. Each week, I’d play puppet master to my 14 month old, acting as her arms and legs playing kids instruments and singing as I watched every other 12-24 month old in there doing it on their own. Every single week it seemed as though a classmate had learned to walk. It was gut-wrenching for me to be there with my child who was not progressing and watching every other parent in there sit back and enjoy watching their child be an active participant in the class. After every class, I would get in the car to drive home and cry. What was wrong with Cammy? Why wasn’t she crawling or walking, picking up instruments and playing them or marching in a circle like every other child singing?

That was three years ago and I still have that flashback every single time I take Ryan to a class. On the flip side, I get to sit back and watch my child actively participate with a huge smile on her face and possibly an even bigger smile on my face. I keep that memory tucked in the back of my head as each class Ryan takes, there seems to be a child who is delayed. My heart breaks as I watch his mom do their best to put on her happy face as her child is verbally delayed and poor gross and motor skills make his trip every five steps.

I know you.

Ryan is currently taking gymnastics class.  She is the youngest in the class of 2-3 years olds. She the only child in there shouting out the correct letters when the teacher holds up a letter and asks what it is. I know my child is not a genius or the next Olympic gymnast. I am conflicted though in encouraging her to continue to answer the questions or do I tell her to be quiet? Three years ago I would have wanted to punch my child and me. So, I tell Ryan to let other kids try to answer and only answer if the teacher asks her. 

Today, my heart hurt as I watched a mom and her son who does not speak and is very clumsy. Four years ago, I would have thought this child was wimp and that Ryan could beat him up. Four years ago, I would have thought that the parents were not working with him at all with speech, language, fine and gross motor skills.  Today, I look at him and just know that his parents are doing everything they can for him, providing therapies and he is just not on the typical developmental path. Today, I know that it probably took everything for that mom to put a smile on her face, come to class, try her best, watch him try his best, while every other child in there is cruising by him physically and verbally. 

While I could only wish that Cammy only had a speech delay, was uncoordinated when she held things or tripped when she walked, I understand that it’s all relative.  This mom could be absolutely devastated by her version of a loss of a perfect child. I know we shouldn’t compare, but it’s only human nature. I’m sure she would feel better about her son’s development if she ever met Cammy. It’s all relative. 

I wish I could take credit for the kind of kid Ryan is. But the truth is Cammy gets the credit for the kind of kid Ryan is. Today, Ryan patiently waited for this boy to complete his tasks, cheered him on while he was trying his best and gave him 5 at the end of class. How does a 2 year old know how to do that? Every single day she sees her sister work so hard to complete a task that is involuntary for you and I. Every single day, she wakes up, runs downstairs and says “Good morning Cammy.”  Every single afternoon this summer when we pick Cammy up from swim camp, she says “Hi Cammy.  How was swimming?” Every single day, we catch Ryan grabbing Cammy’s hand to help her play with the ipad.  Every single day, Ryan tries to give Cammy water or a snack.  Every single evening she hugs and kisses and says “Good night sissy.  I love you.” She does all this without being asked. She just gets it.  My sister Joanne told me a long time ago when she first noticed that Ryan just gets it that “Ryan is going to be such cool kid.”  You are absolutely right, Joanne, Ryan is a cool kid.

Letter #8: June 25, 2009

June 25, 2009

Dear Cameron-

Father’s Day was June 21.  I was so excited to make dad’s 1^st Father’s Day really special.  I put one of my favorite pictures of you and dad on a mug with the caption “Happy 1^st Father’s Day, Daddy.  You and me… best pals forever.”    I hope you know that dad says “You and me… best pals” to you almost every day.  Then, we got him a Movado watch that he’s been eyeing for a long time.  On the back we engraved “1^st Father’s Day.  Love, Cammy.  ’09.” He loved it!

I found a picture of me at your age (a little over 3 months) and tried to recreate the picture to see if there was any resemblance.  Unfortunately, I didn’t see much, but you can see for yourself.  

Grandma gave me this blanket.  She kept it because it was my favorite.  It was a special blanket that we got to use when we were sick.  I hope you’ll like it as much as I did. 

Mommy at 3 months old.

Cammy at 3 months old

Lately, you have been extremely chatty with grandma.  I was lucky enough to catch it on video.  You had about a 3 minute conversation with her.  I love this picture of you taking a snooze on grandma’s shoulder.  It’s right after she fed you.  She LOVES feeding babies.  I’m not sure if I’ve mentioned it before, but you have the loudest burps after you eat.  We call them “Papa Joe burps.”  Grandma loves burping you after you eat.  

We have so many nicknames for you.  We’re afraid you’ll be so confused.  Here’s a list of some of them:

• BLT
• Tizzle
• Little Butts
• Peanut
• Peanut Butter
• Butters
• Baby Boo Boo

… I’m sure there’s a lot more nicknames to come.

You are 15 weeks old.  Today, we went over to grandma’s house to put you in a baby pool for the first time.  Aunt Meredith bought you a cute bathing suit with matching hat.  You looked so cute.  Unfortunately, you hated the pool.  I’m pretty sure it was because the water was too cold.  We’ll try it again when the water is warmer. 

I love you so much, Cammy.

Mom

PS.  Today, June 25, 2009, Michael Jackson died.  I wonder who will be a musical icon in your lifetime.  Michael Jackson was very big in the 70’s, 80’s, and 90’s.  A lot of people are mourning, like they did when Elvis died. 

Letter #7: June 10, 2009

June 10, 2009

Today you are 3 months old.  Today is also your cousin, Alexander’s 11^th birthday.  You, Xander, Uncle Mike, and I are all 3 months apart, each born on the 10^th. 

A couple of days ago, we met Aunt Kim and her kids at the Museum of Science and Industry.  We’ll go back when you are older.  You slept through most of it.  But your eyes were open long enough to take some pictures. 

I can’t believe how quickly these 3 months have gone by.  You have discovered your tongue.  You stick is out all the time, especially when you smile and laugh.  You have also discovered your eyes.  You feel and tug them a lot.  Grandma C. started playing “Patty Cake” with you and you always smile during it. 

We weighted you in and you are 12.5 lbs.  Your cousin, Anthony is 6 weeks older than you and weighs 12 lbs, 9 ozs.  I can’t wait to see how much you weigh and your length at your 4 months appt. 

You are such a good baby.  You sleep so much (although, sometimes I wonder if it’s too much), and you don’t fuss.  A couple of days ago, dad said to me “It’s all downhill from here, isn’t it?  There’s no way out next one can be this good.”  I think dad and I will be in for a shock if the next baby isn’t like you. 

I love you,

Mom

Letter #6 - May 26, 2009

May 26, 2009

Dear Cammy-

You are 11 weeks old today.  You have quite a personality now.  You are still very laid back, very much like daddy.  You only cry when you need to be changed or you are hungry.  Lately, you have been wanting to snuggle more, with your head on one of our shoulders.  You are smiling and laughing so much more now.  You have the cutest giggle.  Daddy caught it on tape yesterday.  Every time we seem to bring out the camera, you quiet down though. 

We are waiting for you to roll over.  I think it will be within the next 2 weeks.  When you are on your back, you can get to your side.  But you should roll first from your tummy to your back. 

Cammy, you absolutely love taking baths.  You could be sad or crying, but once I put you in that tub, you just start smiling.  I’m not sure if you really enjoy it or you are laughing at how bad I sing!

We’re starting to get plans ready for your baptism.  We are making it a special.  You’re going to be baptized with your cousins Anthony and Olivia at the same church I received all my sacraments, including matrimony, where dad and I got married.  Your baptism will be July 12.

Love,

Mom

Letter #5: May 12, 2009

May 12, 2009

Dear Cameron-

Today we went for your 2 month check up.  Here were your stats:

Height = 23 inches (75^th percentile)

Weight = 11.4 (75th percentile)

Head Circumference = 15.5 (70^th percentile)

They gave you 3 different shots.  The first was for DTAP, HIB, and Polio (IPV), the 2^nd was for Hepatitis B, and the 3^rd was for Prevnar.  The nurse gave you oral medicine for Rotateq.  The doctor didn’t give you the shots b/c she said you remember who gave them to you.  The nurse had me hold you down.  It was so sad. I almost started to cry watching you cry.  But shortly after, you stopped crying and fell right asleep.  Your cousin, Olivia, had her shots 1 week before you and Aunt Erin video taped it.  So, if you want to see how it went, watch her video.  I didn’t want any documentation of that for you.

We got confirmation that Aunt Molly is pregnant today!  I’m so happy that you’ll have a new friend in December. 

I love you,

Mom 

Letter #4: May 10, 2009

May 10, 2009

Dear Cammy,

Today is Mother’s Day.  I just got back from my Vegas trip with grandma.  I hope someday you will enjoy going to Vegas with me and dad.  I hope that you will like to hang out with me as much as I love hanging out with grandma.  You spent Thursday and most of Friday with Aunt Jenni, then dad picked you up and spent the weekend with you.

When I got home from my trip, there was a card from you sitting on the table, wishing me a happy 1^st mother’s day.  It made me so happy. 

Thank you for making my 1^st Mother’s Day so special. 

I love you.

Mom

Hands

I will be flipping back and forth between the past and present with posts from now on.  I will get you all caught up in due time.  Think of the "Letters to Cammy since before she was born" as a flashback.  I'm sorry if this is all confusing.  I will make sure all posts are dated!

June 12, 2013

There are a few songs that gut punch me when I hear them for the first time since Cammy's diagnosis.  Songs take on a whole new, deeper meaning now.  Fix You by Coldplay will always make me cry as I remember hearing it on a Christmas special show that Nick Lachey hosts.  We had been waiting for the Rett test results and I was 7 months pregnant and a total hormonal mess.  An acapella group sang Fix You and I balled my eyes out thinking of Cammy.  That will forever be her song.

Today while mowing the lawn, I was listening to Pandora.  Hands by Jewel came on and I just began crying while I continued to mow the lawn listening to each and every word.  The lyrics just spoke to me about Cammy...

HANDS

by Jewel

If I could tell the world just one thing

It would be that we're all ok

And not to worry because worry is wasteful

And useless in times like these

I will not be made useless

I won't be idled with despair

I will gather myself around my faith

For light does the darkness most fear

My hands are small, I know,

But they're not yours they are my own

But they're not yours they are my own

And I am never broken

Poverty stole your golden shoes

But it didn't steal your laughter

And heartache came to visit me

But i knew it wasn't ever after

We will fight, not out of spite

For someone must stand up for what's right

Cause where there's a man who has no voice

There ours shall go singing

My hands are small, I know,

But they're not yours they are my own

But they're not yours they are my own

And I am never broken

In the end only kindness matters

In the end only kindness matters

I will get down on my knees and I will pray

I will get down on my knees and I will pray

I will get down on my knees and I will pray

My hands are small, I know,

But they're not yours they are my own

But they're not yours they are my own

And I am never broken

My hands are small, i know,

But they're not yours they are my own

But they're not yours they are my own

And I am never broken

We are never broken

We are God's eyes God's hands God's mind

We are God's eyes God's hands God's heart

We are God's eyes God's hands God's eyes God's hands

We are God's hands God's hands We are God's hands

Letter #3: April 10, 2009

At Cammy's 1 month appointment, the doctor commented how she had the strength of a 2 month old.  

For Mother's Day, Billy sent me and my mom to Las Vegas.  

Cammy and Papa Joe

My sister-in-law, sister and I all had our first (and second kids within 6 weeks of each other).  Having kids so close in age made me realize quickly that something was wrong with Cammy's development.  

Cammy's cousin, Olivia, is 1 week older than her.  You will continue to see them side-by-side throughout this blog and notice a difference in development.  

April 10, 2009

Cammy,

Today was your 1 months doctor’s appointment.  We were lucky that it fell on Good Friday, so that dad could go with us. 

Dr. Unfer was very impressed with your strength, especially your neck strength.  She said that you have the neck strength of a 2 ½ month old!  That’s my girl! 

Here are your other stats:

Weight: 9 lbs 4 ozs (50%)

Height: 22 ¾ inches (95% - height of a 2 ½ month old)

Head Circumference: 14 ¾ inches (65%)

After our appointment, we went to grandma and Papa Joe’s house to give grandma let grandma know what her Mother’s Day gift is.  I made a onesie for you to wear that read “Grandma, Pack your bags.  You’re going to Vegas for Mother’s Day with my mommy.  Cha-Ching!  Love, Cammy.”  When we got to grandma’s house, she took your coat off to feed you and didn’t notice the onesie for a couple of minutes.  She read it about 3 times before she comprehended it.  She was so excited.  I love going to Vegas with grandma.  I wish you would get the chance to go with her too.  I promise that dad and I will take you to Vegas when you turn 21. 

I love you,

Mom

Letter #2: April 6, 2009