Our Journey

We decided to create a blog so we could share with family and friends about "our journey". Our son Noah is 4 years old and he is the constant light in our world. He was born with a rare genetic disorder called Rubinstein Taybi Syndrome.. Life has not always been easy but Noah has taught us how to be courageous. We are so proud of his accomplishments the past four years. He is beautiful, funny, courageous and strong. We feel so blessed God has chosen us to raise Noah.. We also hope that new parents receiving an RTS diagnosis will find comfort in our words. Nicholas is the perfect addition to our family. God has once again blessed us with a amazing, beautiful little boy. We are so comforted knowing that Noah now has a little brother. Life is beautiful having these two angels in our world.

Tuesday, September 30, 2008

I'll Stand By You.


Since Noah was a very small infant I have been singing two special songs to him. I sing these songs to him all through out the day. At least once a day I ask Noah "do you want to dance?" and right away he crawls into our computer room. He knows that I am going to play our favorite song and dance with him. This time is so special to me because Noah cuddles into my neck and everything is beautiful in that moment. His whole face and eyes light up when we dance. I sing the same song to him before he takes a nap and before he goes to bed at night. I will never stop singing this to you baby. Here are the words to our song..

OH, WHY YOU LOOK SO SAD?
TEARS ARE IN YOUR EYES
COME ON AND COME TO ME NOW
DON'T BE ASHAMED TO CRY
LET ME SEE YOU THROUGH
'CAUSE I'VE SEEN THE DARK SIDE TOO
WHEN THE NIGHT FALLS ON YOU
YOU DON'T KNOW WHAT TO DO
NOTHING YOU CONFESS
COULD MAKE ME LOVE YOU LESS

I'LL STAND BY YOU
I'LL STAND BY YOU
WON'T LET NOBODY HURT YOU
I'LL STAND BY YOU

SO IF YOU'RE MAD, GET MAD
DON'T HOLD IT ALL INSIDE
COME ON AND TALK TO ME NOW
HEY, WHAT YOU GOT TO HIDE?
I GET ANGRY TOO
WELL I'M A LOT LIKE YOU
WHEN YOU'RE STANDING AT THE CROSSROADS
AND DON'T KNOW WHICH PATH TO CHOOSE
LET ME COME ALONG
'CAUSE EVEN IF YOU'RE WRONG

I'LL STAND BY YOU
I'LL STAND BY YOU
WON'T LET NOBODY HURT YOU
I'LL STAND BY YOU
TAKE ME IN, INTO YOUR DARKEST HOUR
AND I'LL NEVER DESERT YOU
I'LL STAND BY YOU

AND WHEN...
WHEN THE NIGHT FALLS ON YOU, BABY
YOU'RE FEELING ALL ALONE
YOU WON'T BE ON YOUR OWN

I'LL STAND BY YOU
I'LL STAND BY YOU
WON'T LET NOBODY HURT YOU

I'LL STAND BY YOU
TAKE ME IN, INTO YOUR DARKEST HOUR
AND I'LL NEVER DESERT YOU
I'LL STAND BY YOU
I'LL STAND BY YOU
WON'T LET NOBODY HURT YOU
I'LL STAND BY YOU
WON'T LET NOBODY HURT YOU
I'LL STAND BY YOU


Monday, September 29, 2008

My Big Boy




Today Noah had aquatic therapy and his therapist mentioned how much stronger he is. For the past few months Noah has been having a very hard time at therapy (dealing with a lot of anxiety.) But the past week or so it's like Noah is a new baby. I can tell his confidence is soaring and he is so excited to be on his feet. Instead of pulling up to his push toy and screaming his head off, he pulls up and practically runs through the house with it. He is walking so much better holding onto my hands also. I am noticing that he is so much more motivated to walk around and be on his feet. Today Noah's therapist said "It won't be long until Noah is walking." I know he will do it when he is ready though. He is such a big boy and we are so proud of his new found courage lately. Way to go sweet boy..

Saturday, September 27, 2008

Noah and Rocky




Here are some pictures of Noah and our dog Rocky. Noah crawls around after Rocky for a good part of the day. I have to admit our dog is so patient and loving when it comes to Noah and any kids that are around. He will be 10 in November and he was our baby before Noah was born (along with our other dog we had to give away Jake.) Here is a little note from Noah to Rocky.

Dear Rocky dog,
Thank you for letting me pull on your ears. You don't even get mad at me.
Thank you for letting me pull on your gums when you are trying to eat your dog food. Sometimes you even share your dog food with me.
Thank you for letting me crawl all over you . You even let me pull to stand up next to you.
Thank you for letting me wake you up when you are trying to sleep. Even then you don't get mad at me.. I love you Rocky. Love, Noah.

Another funny note about Rocky and Noah. The other night Tommy was giving Rocky a bath in the bathroom tub. Noah crawled in and pulled to stand so he could watch bath time. Every time Tommy filled up the cup to pour on Rocky, Noah would scream and get upset. We came to the conclusion that Noah thought Tommy was hurting Rocky by pouring water on him. It was so cute. Noah was protecting Rocky instead of the other way around..

Thursday, September 25, 2008

What I Have Learned The Past 2 Years.

A few weeks ago I wrote about what Noah has learned these past 2 years, so I have decided to write about what I have learned.

Sometimes what you fear becomes what you treasure the most.
Hope is so important to have in your heart.
Prayer is my biggest comfort.
Sometimes "slow" is fast enough.
Never ever ever give up.
A mother's love is the most powerful of all.
"True" beauty is not seen through the eyes but felt within the heart.
At times people can be ignorant when they don't know what to say.
Sometimes we have to just let go of a dream and create a better one.
Friends leave footprints on our heart and sometimes walk away.
Laughter is essential every day.
Sadness does go away even when it seems impossible to think so.
Not to look away when I see a child with special needs. Please don't it hurts.
Different is more interesting . What does normal mean anyway?
Not to ever ask why? Just accept Gods plan for my life.
Enjoy every second with my beautiful family. Life can go by way too fast.

Tuesday, September 23, 2008

Nude's Blues

Noah and I are visiting my sister Angie and brother in law Tommy in MD. Unfortunately my grandmother passed away so this wasn't really a vacation. But we still found things to keep us entertained and laughing. Tommy brought out his guitar today and Noah became a musician. Below is a video showing Noah and Uncle Tommy playing their master piece they created. "Nudes Blue." In case you are wondering what Nudes means this is Noah's nickname he somehow has been carrying around for quite some time. Hope you enjoy.



video

Thursday, September 18, 2008

Noah Had Fun On His Play Date






Today Noah went to his favorite place with his favorite friend. Yes, Noah adores books so for him the library is like a "candy store". All we have to do is walk toward the library doors and he is so excited. We met my friend Heather and her daughter Ambrielle (19 months old) at the mother goose story hour. At the story hour the kids sit in a big circle and listen to a couple of books and sing songs(well the parents really sing the songs) and the kids crawl or run around. Today they told a story about ducks and then passed out yellow rubber ducks. Noah loves ducks and cows so this was very exciting for him. Well some of the kids were saying "quack quack" and Heather and I both heard Noah trying to say it too. That was such a wonderful moment in that he was actually almost saying the word. Way to go sweet boy.. Oh one more important thing to mention about Noah and the library is that he goes for the same book every time he gets there. And the best part is that he remembers where it is on the shelf. You can see him in the pictures reading it "The Peace Book" by Todd Parr. He continues to amaze me. Ambrielle adores Noah and chases him around calling "no no". That is her name for Noah. They are both truly adorable together and I really enjoy seeing Noah play with his friend. Thanks Heather and Ambrielle we love you..

Wednesday, September 17, 2008

The Big Blue Binky and Sleepless Nights.




Since Noah left the NICU at 5 weeks old he's had a binky. He used to have a little orange one that was too small for his face, so I bought him this big blue binky that you see in the pictures. I have grown to hate the binky. I know hate is a strong word but this binky is responsible for keeping me up at night. At least 5 or 6 times during the night Noah wakes up and cries for his binky. He won't go back to sleep until I find it and put it back in his mouth. This has been an ongoing saga for quite some time now. If he doesn't have his binky when he lays down for bed he will not fall asleep. How am I ever going to be free from "the big blue binky?" This is a question I ask myself when I get up in the morning and stumble to my coffee.

Tuesday, September 16, 2008

Hat Game





Ok I have to admit today was a pretty boring day. Noah has been feeling a little under the weather with a fever for the past few days. I canceled his therapy for the day and we were both getting a little antsy sitting around the house. So we decided to play the "Hat Game". Noah and I take turns putting on this big purple hat and taking it off each others head. I know we are both weird sometimes but hey it made us both laugh. And this isn't just some ordinary purple hat. Tommy wore this hat when he entered the best dressed "pimp" contest when he was in his 20's (ha ha) and pre Noah days.. This is what we resorted to today..(playing with the old pimp hat.)

Monday, September 15, 2008

Things You Have Learned


Since Noah will be 2 soon, I decided to blog about what he has learned in our 2 short years together.

Dear Noah,
We are so proud of you. These are some things you have learned. I'm sure I might miss something because you have accomplished so much. This is starting from the beginning of your beautiful life.

1.You learned to drink from a bottle. (even when the specialists said you probably wouldn't.) You proved them all wrong and stopped using your g tube at 2 1/2 months.
2. You learned to sit up all by yourself.
3. You learned to roll over.
4. You learned to eat solid foods and became a little piggie.
5. You learned to take things in and out of jars and containers.
6. You learned to beat on your drum and pots and pans.
7. You learned how to roll and throw a ball.
8. You learned how to drink from a sippy cup.
9. You learned how to turn pages in a book.
10. You learned to sign "more" and "all done" sometimes.
11. You can say "ma ma" "ha ha" "wa wa" and "ba ba". You love to babble.
12. A couple of times you have tried to tried to say "moo moo." You love cows.
13. You learned to stack big blocks.
14. You understand most of what I say.
15. You can tell me which shape is which when I ask you. You grab the right one.
16. You are beginning to put together wooden puzzle pieces.
17. You can wave "bye bye" although I have to really coax you.
18. You learned to open and close doors and cabinets.
19. You have learned how to scribble on your magic drawing board.
20. You learned how to crawl, pull to stand and cruise.
21. You learned to walk your push toy. And to walk in front of me holding only one hand.
22. You have learned some farm animals.
23. You learned to open and close your pop up toys.
You have learned so much in the last two years Noah. We will always believe in you and know that you can do anything you want to do. Never give up.. We love you.

Saturday, September 13, 2008

It's Bath Time




One of Noah's favorite things to do is take a bath. This is where he babbles the most and laughs uncontrollably. He usually plays with his rubber duck and rubber cow but today he had a new game. He kept the washcloth in his mouth and laughed at himself. It was too cute to not take some pictures. I caught him the other night crawling around with a stuffed animal in his mouth. I think sometimes he thinks he's a dog like Rocky. He even shook his head like a dog would when I tried to take it out of his mouth. Just following after his big brother Rocky.. Enjoy the pictures..

Friday, September 12, 2008

10 Reasons Why I Love You




Here are 10 Reasons Why I Love You Uncle Tommy..

1. Because you are my God Daddy
2. Because when you first met me I felt how much you love me
3. Because you love my Aunt Angie so much
4. Because for my 1st birthday you made me a cool dvd
5. Because you made up my very own song.. Just for me
6. Because you traveled 1o hours in two days just to see me
7. Because you pushed me around NYC . Even though I knew deep down you were anxious.. He He
8. Because you made me my own video
9. Because I know you will love me always and forever
10. Because you grew a stubbly face all for me

Love, Noah.

Thursday, September 11, 2008

Am I hitting the terrible 2's already??

Clearly one can see how mischievious Noah can be. Just look at him here looking at Victoria Secret models at the young age of 19 months.. Noah will be 2 October 15th. Yes and you guessed it he is beginning the terrible 2's already. He may be delayed in some areas but not this one. Noah has been throwing temper tantrums like you wouldn't believe. Of course its worse when we are alone during the day. If I leave the room he screams "ma ma" at the top of his lungs and just cries. He pounds his fists and kicks his feet on the floor as hard as he can. Today he bit the dogs nose and smacked him in the face.. Rocky just sat there and then hung his head low and walked away. He is such a good dog.. 'Oh Noah you are going to be a handful.".. Happy Almost terrible 2's.". I hope you will be Rocky's friend again."

Wednesday, September 10, 2008

I Wish I Had Known.


Anyone who is close to me knows how hard it was for me when Noah was first diagnosed. So I decided to blog about what I had wish I'd known almost 2 years ago.

I wish I had known
How strong you have made me feel
How your smile could brighten a cloudy, rainy day
How your eyes tell a story of strength and undeniable beauty
How much you love to dance
How you love to read books
How you love to listen to music
How easy it is to make you laugh
How you bring so much joy to my heart when you call me "ma ma"
How you love bath time
How you could be happy playing with your ball all day long
How you have shown more courage in your little life than I can imagine
How cute your little mouth and feet are.. Especially your crooked little thumbs
How much you love cereal bars.. Ha Ha
How you like to hug Rocky and pull on his ears
How comforting your hugs are to me
How you love when I sing you to sleep
How you are the most beautiful, funny, extraordinary person in my life

I love you Noah more than the sun, moon and stars.
Love, Ma Ma..

Tuesday, September 9, 2008

Hmm Big spoon or little Spoon??






Noah had fun tonight eating his Macaroni and Cheese. He grabbed my spoon and tried to eat with it. He looked so proud as if that spoon would fit into his tiny mouth. Look at his face it looks like he is thinking "hmm which one should I use.. Big spoon or my little spoon.". He loves the camera..

Monday, September 8, 2008

Funky Format

Please excuse the format of my previous entry.. I am still trying to figure out how to edit my posts.. Guess you get the idea though..Any ideas or help from any fellow bloggers? Why can't I label underneath pictures?? HELP...

Thank You Uncle Micheal.

Aunt Heather, Uncle Micheal and Noah
Hannah, Seth, Micheal and Heather. Mommy Daddy and Noah.

Ever since Noah had a fall down a step he has been petrified to crawl up any step.. Noah overcame his fear over the weekend with much help. We were visiting Noah's Aunt Heather and Uncle Micheal on Saturday. Noah crawled over to the step like he always does . He pulled up to the step and then just started yelling ma ma ma ma for me to come save him. I decided to stay out of site in hopes he would get so mad that he would just go up the step. No such luck until Uncle Micheal walked in. Noah and Micheal have a unmistakable bond that would warm anybody's heart.. Uncle Micheal sat down and held out his arms and coaxed Noah up the step. It was so cute Noah was stretching out his arms like "please Uncle Micheal just pick me up". But finally one leg, then the second leg and he was up.. It was a huge victory for Noah. Those steps have been defeating him for a long time. We all clapped and he looked so proud. The perfect example of something that may seem small to someone else but so huge to our family. We love you so much Noah for overcoming your fear.. Thank you for being Noah's friend and supporter Uncle Micheal . We love you too.. I didn't bring my camera so I didn't get a picture that day. But here are some old pictures of Aunt Heather and Uncle Micheal with Noah. This is their wedding day and I think Noah was only 5 months old.

Saturday, September 6, 2008

The Special Mother

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter?
That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."

Friday, September 5, 2008

Noah's Version of Peek a boo..

Uh Oh mama you caught me!!!!!! Noah loves to go through the cabinets all day long. So much for all the toys he has out in the living room. He could care less. As long as he has the cabinets and Rocky (our dog.) He is such a ham..

Thursday, September 4, 2008

25 Things About Me

I really enjoyed reading everyone's blog when they did this so I will be brave.. Here is my 25 things. I can't believe I am doing this..

1. My middle name is Joyce.. Thanks mom I was always embarrassed to tell people that. (sorry to everyone named Joyce.
2. The other night I watched the spin off of 90210 from the 90's. That is also embarrassing considering I watched that when I was in high school.
3. I am a reality show junkie. I have seen every American Idol season and episode.
4. I am a coffee junkie and I have to have french vanilla cream with it or I will freak out. Well not really.
5. I go to Starbucks at least once a week and have a mocha with something sweet and fattening.
6. I love to sing to Noah even though my voice sounds like a dying cat.
7. I used to have my belly button pierced and my tongue.. Yes I know I can't believe I did that.
8. I secretly love David Cook from the last American Idol.
9. When I was in high School I was a cheerleader.
10. My hair has been every color of the rainbow.
11. I love to watch soap operas when Noah is napping.. Especially As the World Turns..
12. I go on you tube and play old songs from the 80's (from guns n roses , skid row etc.) I know that's really pathetic.
13. I love red wine
14. I secretly can't wait to have another baby and I hope its a girl.. (not pregnant yet)
15. I had the worst beehive bangs when I was in high school.
16. I love the Ocean and the sounds of the seagulls.
17. I threw eggs at peoples houses when I was in high school.. 9th grade to be exact.
18. I used to take my sisters ID to go out when I was only 17.. Thanks Angie for being just the right age. She was mad at me back then.. ha ha.
19. I pray for at least a half hour before I fall asleep.
20. My favorite movie is "Terms of Endearment". I have watched it a billion times.
21. I really can't stand. John McCain. sorry everyone.
23. I love to sleep and I hate getting up in the morning..
24. Oh I have 3 tattoes. I know.... Don't judge me.. ha ha..
25. Last but not least I would also love to adopt a child..

Wednesday, September 3, 2008

Some Pictures






Here are some recent pictures on our trip to NY to see my parents..

My First Entry

So I have decided to blog since I have been following my fellow RTS friends blogs for a while. I promise I will try to keep up with it ...Today Noah and I went to PT and ST (what we do every Wednesday.). I found myself with tears in my eyes watching Noah struggle with his anxiety during therapy.. I felt so guilty for just sitting there and not picking up my baby and running out.. For the last few months he has cried, shacked, screamed when the therapists try to get him to do something. I have come to dread PT lately because of this. I think me and Noah are just sick of therapy all together. I wonder what it must feel like to be so little and have to go to therapy every day?? Yuck.. So for the rest of the day Noah and I will just relax... Hope everyone will enjoy reading about my little one...