Say Something

Present day: December 20, 2013

As I mentioned before, there are certain songs that just gut punch me.  It comes out of no where and the emotions overtake me and I just cry.  I heard this song a few weeks ago on an awards show.  I walked out of the room after I heard the words "Say something I'm giving up on you" because I was taken immediately taken back 3 years.  I felt the tears coming.  A few days later, I listened to it on Youtube and cried again.  

In my darkest days 3 years ago while I was 8 months pregnant, waiting for the phone to ring to confirm Rett syndrome, I was going through the the stages of Grief: Denial, Anger, Bargaining, Depression, Acceptance.  I remember writing about this a little but after the official diagnosis, which I will eventually post.  Three year ago in December, I went through Denial already.  I denied Rett syndrome when the doctor first uttered those words on November 23, 2010.  Cameron could NOT have Rett syndrome.  She didn't fit all the criteria.  She was so social and had great eye contact. 

By this time in December 2010, I was past denial, deep down in my heart, I knew Rett syndrome fit.  In December 2010, I was ANGRY!  I really don't remember several events from December, including my own birthday and Christmas because of this distress, but I do remember always being angry.  I was angry at people who were complete assholes for having healthy beautiful kids.  I was angry when my siblings tried to make me feel better telling me things would be okay. I was angry at anyone who said "I know what you are going through."  I was angry at anyone who said "God only gives you what you can handle."  I was angry at women who worked and were not home with their children enjoying every minute of their typical child's life.  I was angry to be around my friends' typical kids.  I was angry watching my niece and nephew Cammy's age running around and talking.  I was angry to see my siblings enjoying holidays while their children played and I could never do that. Then, I was angry at myself for feeling angry.  I was angry at Cameron.  I wanted her to show me or say something to make me feel better, to let me know everything was going to be okay.  I didn't want to give up on her, but I slowly was reading everything I was reading online about Rett.  I was ANGRY!

Bargaining then joined the angry party. Every birthday since 2010, my mom writes in my card how she would sell her soul to the devil for my birthday wish to come true.  She bargains with the devil for her granddaughter to say something and for her daughter to not feel this pain. I pleaded and begged for everything to be okay. I pleaded and begged Cameron to crawl.  I pleaded and begged her to feed herself.  I pleaded and begged her to pick up an object and hold it for 10 seconds.  I pleaded and begged her to say something.     

So this song has been sneaking up on me, gut punching me and bringing me back to some dark days.

Say Something, I'm Giving Up On You...

Letter #21: November 29, 2010

November 29, 2010

Dear Cameron,

I have never been more worried in my entire life.  We have been holding our breathes waiting to hear the outcome of your blood work. 

We decided to make an appt. with a physiatrist.  On November 23,  we saw Dr. Farabee (the well known, Dr. Keen doesn't see new patients).  I cannot believe how long the wait was to get in (couple months).  After the evaluation, I see why there is a long wait.  I was extremely impressed with the time she spent with us.  For 2.5 hours she observed Cameron, asked a lot of pregnancy, birth, and developmental history.  You’ve been a little medical mystery b/c I had a normal full term pregnancy without complications during delivery plus you don’t quite fit the exact diagnosis for what seems like anything.  Your MRI and blood work over the summer came back normal.  I don't feel like you’ve has regressed; just platued for a little and now making progress (slow, but progress nonetheless).  For me it's like watching paint dry since I am with you 24/7, but for others, they notice improvements, which I get overjoyed hearing. 

Anyway, after the initial evaluation, the doctor wanted to do more blood work to check for genetic disorders, one in particular.  I am praying and hoping for the results to be negative.  PLEASE!  They are testing for Rett syndrome (http://www.ninds.nih.gov/disorders/rett/detail_rett.htm)

and if this comes back positive, this is going to be quit a challenge for all of us.  I get sick to my stomach reading about it.  Dr. Farabee said that you fit into some symptoms, but not others.  We are holding on to some hope b/c you don't fit into some big symptoms of this, such as poor/no eye contact, no socialization, a regression of skills, seizures, trouble sleeping, feeding issues.  Eye contact, social interaction, and feeding are some of your strong skills.  Plus, the past 2 months, you’ve started to pull yourself up from sitting to stand (in a chair) and can now feed yourself with a fork/spoon.  I tribute a lot of this to Grandpa Babiarz working so hard with you.  Your head doesn't seem small to me at all, I thought you had a big Corrado head :)  The things you are exhibiting of this syndrome include low muscle tone, milestone delays, hands constantly in your mouth (but when you put a mitten on your hand, you don't do it).  I forgot to mention that the Dr. called Lutheran General to see if you were initially tested for Rett syndrome back in June.  It turned out that you were tested for about 160 things and Rett syndrome was one of them.  However, they do a small sample testing of each thing (which I presume check for big red flags).  The 10%-ish that you were tested for came back negative.  So, we are hanging onto that tiny bit of hope that you were already tested for.  

I can't tell you enough how impressed I was with the physiatrist.  Right after they called Lutheran General for the blood work, they found out your blood was sent to a bank in NC.  They called that lab and told them to test that blood so that you didn't have to go through another blood draw. 

We are proud of our little peanut and see you trying hard everyday.  The equipment you’re working with is helping so much, especially the orthodics.  When you first put them on, you got this enlightened look like "wow, this is what it's supposed to feel like when I stand!"  You stand so well in them.  The eye patching has worked wonders.  You can barely notice anything anymore, only when you are extremely tired.  You babble a lot and tried so hard to say full words.  It just doesn't seem like all your muscles are working to fully form the words.  You say the correct first syllables for certain words, which is a good thing.  You are saying “Uh” for “Up” and “Ba” for “bottle, baby” and other “B” words.  These are the improvements we are so happy with.  Your body seems under stimulated, but once we get some OT exercises in, your muscles seem to 'wake up' and you’re really good. 

The past couple of days have been the most terrible days I've gone through with the nervousness of waiting to hear back from the lab.  I've cried more these past couple of days with worry than all of my almost 31 years combined.  I know I have to try to remain calm and take care of myself for #2, but it's so hard.  This parent thing is so much more emotionally draining then I ever thought!  :)  Daddy’s been absolutely wonderful.  I wish I was able to think like him.  He keeps telling me "there's no use in worrying yet b/c we don't know yet.  Whatever it is, it is and we did nothing wrong, it's just a fluke.  We will be strong for Cameron b/c we have no other choice."  Our families have been so wonderful as well. 

I love you so much, Cameron.  No matter what the outcome of these results or future testing concludes, we will do everything we can to give you the best life possible.  We want the best for you.  We want you to be happy and healthy.  I wish I could take all the struggles away.  You are such a happy little girl.  You make everyone smile.  We will always do what we think is best for you.  We will be strong for you as you’ve been so strong for us. 

I love you with all my heart.

Mom

Letter #20: September 24, 2010

September 24, 2010

Dear Cameron-

This morning we all went to Lutheran General Hospital.  First, we had an ultrasound to make sure you sibling was growing on pace and to find out he gender.  You’re having a little sister!!!!  We are so excited.  Dad and I were secretly hoping to have another girl.  We’ve just loved having you so much.  Plus, we have everything already!  I know you’re going to be such a great older sister.  I hope you get along as well as I did/do with my sisters.  Right now, we think we have her name picked out.  We love the boy names for girls.  So, we’re going with “Ryan.”  I’m sure she’ll get confused all the time, but we just love the name. 

Next, you had your 18 month appt.  Since my appt was running late, dad just took you.  He said you did great, that you did not make a peep during your 3 shots!  How come you’re so tough for him? J 

18 month stats:

Height = 32 inches

Weight = 21 lbs 5 ozs

Other news going on is that we bought a house in Wheaton!  We are set to move Nov 11.  We are so excited to have a big house with a big yard.  We can’t wait for next summer when you can run around outside in the yard.  I can’t wait to decorate your room.  I think Ryan will get all your old decorations and you’ll get a big girl bed, maybe with Curious George bedding.  You love monkeys so much. 

We are so proud of you, Cameron. 

We love you so much.

Love,

Mom

Green Lake boating with Aunt MAC

Green Lake swimming with Uncle Dave

OT with Grandma

PT with Papa Joe

First PT, Colleen

Pirate patch to strengthen my right eye

Letter #19: June 16, 2010

June 16, 2010

Dear Cameron,

You’ve had a busy month!  Mom and dad had been nervous that you still are not crawling or walking and your speech is a little delayed too.  We wanted to make sure it was nothing more than just low muscle tone.  So, we went to a neurologist who said that you had “hypotonia” (low muscle tone), and that we should do some tests to figure out the reason.  You had lots of blood drawn, about 7 vials.  Thank goodness grandma was there because I was crying while the nurses took your blood.  Then, we had your hearing tested, which checked out normal (phew!).  Next, was the MRI.  It was the worst experience of my and daddy’s lives.  It was so hard to watch the nurses poke at you to find a vein.  It actually took an hour and a half, poking you 8 different times.  I almost passed out after an hour.  When they finally go it, they gave you a sedative, which made you fall asleep within 2 minutes.  It was hard for me to watch you fall asleep like that.  Daddy was brave and went in with you for the MRI.  We had to wait a couple of days for the results.  In the meantime, you went to grandma and grandpa B’s for the weekend while daddy and I went to Las Vegas (it was my Mother’s Day gift from you J. )

Monday, June 7, began the week of wonderful news.  We found out that I was pregnant!  You are going to have a brother or sister in February!  The very next day, we found out that the MRI came back “normal”  ahhh, what a relief!  It was like a huge weight was lifted off my shoulders.  On the same day, we found out that your blood work was all “normal” too!  That week, we took you to the eye doctor.  He said that your right eye was a little week, so we needed to strengthen it, but otherwise, your inner eyes looked good (phew!). 

So, it was a week of incredible news for us!  Now, we know for sure that nothing is neurologically wrong.  Actually daddy never thought anything was wrong in the first place, just that you were a little weak.  We just need to work you out several times a day until you catch up to everyone else!!!

I took you for your 15 months check up (you turned 15 months on June 10, which is your cousin, Alexander’s birthday).  Here were your stats:

Weight: 21 lbs 6 ozs (25^th percentile)

Height: 31 ½ inches (+75^th percentile)

Head Circumference: 17 ¾ (25^th percentile)

I’m so happy that you are okay.  And I’m so happy that you are going to have a sibling.

I love you very much,

Mom

The first time I met my friend, Emma

Letter # 18: May 29, 2010 - The search is on for a diagnosis...

My parents, siblings and in-laws have been more supportive and helpful than I could ever have hoped for in the search to find out why my little girl is not progressing.  I know my siblings would joke to my mom "Oh Jackie's at your house, again?"  Well, I needed that support.  I needed that love.  And I needed someone there with all these appointments as I sat there like a deer in headlights, not able to remember everything a doctor said to relay back to my husband.  There are only so many days my Billy can take off work when you start (and continue) to have endless appointments.  My mom has always been there in my life and especially now to provide comfort and make me feel like everything will be okay and that she can make anything better (as she always has).  My dad has always been there to give the impartial advice.  In these appointments he was my barometer of how concerned I should be.  

I decided to put this letter into a video and dedicate it to my parents.  They mean the world to me.  They will celebrate their 45th anniversary on Sept 1.  

I know that they are hurting as much as I am throughout all of this.  I cannot fix this for my daughter and make it all better.  They cannot fix this for their daughter or granddaughter and make it all better.  

*** This is your tissue warning to all those who have asked for one in the past ***

Letter #17: May 11, 2010

May 11, 2010

Dear Cameron,

You are 14 months old!  I can’t believe it. 

This past weekend was Mother’s Day.  You gave a super cute card, which had a picture of you on it.  You gave me a trip to Vegas for June 5^th.  So, you get to stay with grandma and grandpa Babiarz while dad and I go to Vegas.  We cannot wait until you turn 21 and take you there!

We started you in PT about 6 weeks ago to get you moving around.  You still are not crawling or walking, but we hope you’ll be cruising along soon enough.  You are just such a chill baby, you don’t care about moving anywhere. 

I’m so excited that it’ll be summer soon.  You’ll get to play with Anthony and your other cousins a lot more. 

We are so grateful for you.  You always make us smile. 

I love you so much,

Mom