Letter #26: January 7, 2011

January 7, 2011
2:45 pm
Dr Farabee: "It's positive.  Your daughter has Rett syndrome"

LOSS

I always thought going through the stages of loss was only when someone died.  It’s not true.  I have been going through the stages of loss.  I haven’t lost my child, but lost the idea of a perfect child.  I used to think hearing “loss of a perfect child” was dumb b/c no one is perfect.  But I have realized that it’s means that you have all these high hopes for your child and want the same opportunities for them that every other child will.  And the day you start to realize that your child will not have those things, you have lost your perfect child. 

Denial

Anger

Bargaining

Depression

Acceptance

I think you go through these stages for different amounts of time and might flip back and forth to stages.

Denial: November 23, 2010.

This is the date when we went to the physiatrist’s office and first heard of “Rett Syndrome.”  I kept thinking that my child couldn’t have this b/c she doesn’t fit into all the symptoms of it and has seems to be making progress.  Painfully slow progress, but progress nonetheless. 

Anger:

I go through this all the time.  As a matter of fact, I have been going through this for the past 15 months when I started to realize how behind Cameron was.  It was anger at myself, thinking I wasn’t doing something right, that I was a bad mom, that she would have been better off if I went back to work and she was in daycare.  Why couldn’t I get my child to move?  Then, for short amount of time during the day, I would get angry at her.  I know it’s terrible, but I just couldn’t understand why she was different and so far behind.  Then, I’d get even more angry at myself for thinking and feeling that toward my little innocent angel. 

Why me?  Why Billy?  Why Cameron?  What did we do wrong?  Am I paying for sins from the past?  There are much worse people than me, why are we being punished?  Why would “God” do this to anyone?  It’s not fair!  Why do I have a child who is eternally 6 months old?  Everyone else has independence and I have none.  All other children can play by themselves and occupy themselves, while I am constantly on the floor entertaining my child, feeding my child, carrying my child, guessing what she wants. 

Bargaining:

God, I’d do anything for my child to be healthy and normal.  I really would.  

Letter #25: January 1, 2011

Happy New Year!

I hope this new year brings about all wonderful news and progress. 

We still have not received the results from Cameron’s blood work.  What could possibly be taking so long.  I was told 3-4 weeks.  It’s been 5 and a half weeks.  Are they just not going to tell me until our follow up appointment on 1/11?  Is it possible that it’s not Rett and they are testing for other things now? 

Cameron had her swallow test done on 12/23.  As we suspected, she is not swallowing her food.  She takes 3 bites and swallows.  Things like waffles, oatmeal, pasta, etc. are just sliding down her throat and probably breaking down easily.  Harder foods like meats and cheese are not breaking down.  When they watched her drink her juice, they noticed she has reflux.  So, with a combination of the reflux and hard foods, she sometimes throws it all up. 

We immediately changed her diet.  We took away all hard foods and acidic foods and drinks.  It has made a huge difference.  At least, we are attributing it to the change in diet.  In 10 days, she has not woken up once in the middle of the night and has even slept 1-1.5 hours longer in the morning!!!  I hope this continues.  We need to go to a nutritionist and GI specialist to get more information though.  In the grand scheme of what is going on, the not chewing and reflux is a very minor issue. 

Billy took Cameron to get her eyes checked on 12/30 at the Wheaton Eye Clinic.  He was very impressed with how thorough they were.  They spent an hour with her.  Her eyes have gotten stronger, however she is farsighted.  This news was definitely not surprising to us, as neither of us can see.  So, we get to go pick out some glasses this week.  Hopefully the glasses will help her.  We think she’s going to look so cute with glasses!

On New Year’s Eve, during the last half hours of 2010, I could not stop thinking that this is the last year (time) that we will have with our angel without a diagnosis. 

I hope I will have the strength to be the mom that Cameron needs me to be.  I hope she will never suffer or realize that she is different.  I was told that parents of kids with special needs hurt more than the kids b/c it’s the parents who know they are different.  I just wish Cameron would have all the same opportunities as every other child. 

How did we get here?  

Letter #24: December 20, 2010

… still waiting for the test results. 

I heard this song and immediately started crying listening to the lyrics.  It sums up how I feel.

COLDPLAY “FIX YOU”

When you try your best but you don't succeed

When you get what you want but not what you need

When you feel so tired but you can't sleep

Stuck in reverse

And the tears come streaming down your face

When you lose something you can't replace

When you love someone but it goes to waste

Could it be worse?

Lights will guide you home

And ignite your bones

And I will try to fix you

And high up above or down below

When you're too in love to let it go

But if you never try you'll never know

Just what you're worth

Lights will guide you home

And ignite your bones

And I will try to fix you

Tears stream down your face

When you lose something you cannot replace

Tears stream down your face

And I

Tears stream down your face

I promise you I will learn from my mistakes

Tears stream down your face

And I

Lights will guide you home

And ignite your bones And I will try to fix you

Letter #23: December 14, 2010

Don’t judge me.

I feel guilty enough for what is going on with my daughter, even though I’m told it’s not my fault.  I have terrible thoughts and questions that race through my head on bad days like “What’s wrong with you?  Why can’t you do this or that?  Why us?  I just want to have a normal life.”  I can’t even imagine how much more difficult this is going to get. 

Cameron has 5 hours of therapies at the home a week.  All I want to do during that time is relax or housework.  But I never can.  There is a constant guilt coming across me either from myself or the therapists.  I’m 7 months pregnant and carrying 45 lbs of baby and Cameron combined constantly and playing on the ground incessantly.  All I want to do is have someone else play and work with my child for a while.  I know that sounds terrible.  At these therapies, I end up on the ground trying to motivate Cameron or keep her calm. 

I can’t even recall the last time we went through a day without someone asking “Why does Cameron do this?  Can she do this?  Does she always do that?” Or giving me advice like “work on this.”  What do you think I do all day?   She’s supposed to wear a patch over her eye for 3 hours, wear her orthodics, SPIO vest, and thumb splints.  People keep telling me to just enjoy my child.  How am I supposed to do that with all this shit she has to wear and she hates it.  Why does she have to work so much harder than everyone else?  Why will she always have to?  And will it result in a normal life for her? 

This afternoon, I went in her room 20 minutes after I put her down for a nap only to find her sleeping in a puddle of puke.  She can’t even sit up to get herself out of the puke. 

I know people do have it worse than us, but I’m so sick of people telling me their “sob” stories of how they were sleep deprived with twins, or their child is a picky eater, blah blah blah.  Those are stages people went through for maybe a couple months.  My daughter is 21 months old and we’ve been stuck at 6 months old for 15 months and who knows how much longer.  My child cannot sit and play without falling over after 10 minutes.  And when she does fall on her side, she cannot push back up.  My child does not move.  She might roll over, but does not move forward or backwards by crawling or walking.  I constantly have to be vigilant of my child.  She has no independence and neither do I.  I still have to feed my child.  She doesn’t talk or even indicate what she wants by pointing.  It’s a guessing game.  She’s 21 months old and we still have a 6 month old.  I don’t want to hear about how rough your life is. 

I called the physiatrist’s office 2 days ago and left a message, but I still have not heard back.  When are we going to find out? 

                                                                                  

What’s it going to be like when the baby arrives?  How is Cameron going to react?  Are people going to give the baby more attention than Cameron?  Are people going to give Cameron more attention than the baby?  Is this baby going to be okay b/c we will have to give Cameron so much more attention?  What’s it going to be like when (hopefully when) this baby develops normally?  What is the baby has some fluke genetic disorder too?  God, please get us through this.  I just can’t imagine now what it’s like to have a typical child.  I can’t imagine how much easier life it.  

Letter #22: November 30, 2010

5:00 am

I have made the decision to journal this journey as therapy for me and to document changes in Cameron’s development. 

I kissed my baby goodnight last night, thinking that that might be the last seemingly “normal” night with her without a diagnosis.  As much trouble as I thought I’d have falling asleep, I did pretty quickly.  I had 2 dreams that woke me up though: one where the doctor called to say that the blood work came back positive; and one where she called to say it came back negative.  Since I woke from the second dream at 2:30am, I have not been able to fall back asleep. 

Researching Rett Syndrome on the internet is making me fear more and more that the blood test will come back positive.  But I don’t understand how the blood work back in June could be wrong, as little of a sample as they tested for it, how could it be wrong?  This waiting part is so difficult. 

Our families have been so wonderful; making sure someone is here to take our minds off of the waiting until we find out.  Today my parents are coming over to be with Cameron and me.  I keep trying to prepare myself for the phone call.  I don’t think there’s anything you can do to prepare yourself though. 

I’ve been involved in sports and around kids my entire life so it was no big surprise when I went into education, Kinetic Wellness.  As a teacher and coach, I’ve always needed a “game plan.”  Whatever the news is today, I need a plan.  I need to know what’s going to happen with my child and how to best fulfill her needs. 

I’ve been very fortunate to be able to stay at home with Cameron.  It’s been trying at times, especially the past year, not understanding why she isn’t developing like the typical baby/toddler.  I wouldn’t change it for anything though.  I could not imagine going to work while someone else was with Cameron at home.  I could not imagine coming home, asking a nanny what Cameron did, how she behaved, or what we need to work on in therapy. 

Whatever the outcome is today, Billy and I will be a united force for Cameron.  We are fortunate to have such a large positive support system of family and friends.  We are so lucky that our family members want to play an active role in Cameron’s life.  I need to start taking better care of myself for baby #2 arriving in February.  I need to start letting others help out more. 

1:04pm

The phone rang and I let it go to voicemail.  For some reason, I needed it to go to voicemail.  After 30 minutes, I checked it.  It was the doctor’s assistant telling me that the tests are very specialized and we wouldn’t get the results for 3-4 weeks.  She said to make a follow up appt in 6 weeks and to get the hip xray and swallow test done before that appt.  Why did the doctor tell me to call on Tuesday then?  I haven’t slept in days only to hear that we wouldn’t hear for another 3-4 weeks?!?!  I’m trying not to read any more into that; it is what it is and the test take a long time. 

Now, I have no idea when that phone is going to ring again wither Cameron’s results.  

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