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, December 14, 2010

Proud Ma Ma

I started to cover Noah's walls in his bedroom with all his artwork from school. Every little piece I get makes me so happy. The wall above his bed is covered and soon most of his room will be covered. You should see the proud look on Noah's face when he looks up at his work. It's completely awesome. Here is a picture of some of his work. Notice his cute little thumb in the Santa hand print. By the way I'm loving his teacher and her creativity. She really in truly believes in her students and loves them like her own. We are so blessed to have found this school.







Sunday, December 5, 2010

My Own Special Christmas Tree.

Last night Tom and I decorated our Christmas Tree. But as I was hanging the ornaments, I realized the tree symbolized something more than the usual warm, fuzzy feelings. This is the first year we have put a tree up in our house in years. Every year we have gone to N.Y for Christmas and don't bother putting one up. I thought the last tree we had in our house was four years ago. It was the Christmas after Noah was born and diagnosed with RTS. He was fresh out of the NICU that year we had a tree. My mom was still in Florida helping me. I was still a mess and full of fear that controlled almost every thought. I remember her helping us pick a tree out and then decorating it. I did not decorate the tree that year. I watched in a state of numbness as my mom decorated it beautifully. I did not feel joy and I certainly wasn't in the Christmas spirit. My wounds were very fresh and I didn't know if I would ever feel that "Christmas Joy" again. Wow!!! Last night I realized with each ornament hung that it represented strength. Each ornament was just a little piece of me throughout the last four years. When we finished the tree I teared up. I wish four years ago I had known that the joy would return. And when it did it would be even more powerful than ever. Our Christmas tree symbolizes how far our family has come.

Monday, November 22, 2010

Tuesday, October 19, 2010

My Fourth Birthday Party!

I figured I better post about my Birthday party before it's already time for my fifth B day. I actually turned four on Friday!!!! Mommy brought cupcakes to my school for me to share with all my friends. The teachers made me wear a hat and they all sang Happy Birthday to me. I don't usually like the Birthday song but this year it wasn't so bad. When Mommy picked me up I still had my hat on. I was just trying to impress my friends by wearing it. I really was annoyed they put it on my head!! Then Sunday came and it was time for my party. I'm so excited to tell you that my party was all about ELMO!!! I LOVE ELMO. We had a awesome Elmo cake that Daddy got for me. Daddy was so proud of my cake and he made sure it didn't get messed up..When we went to get my Elmo decorations from the party store, I was in heaven. EVERYTHING WAS ELMO. It was so cool. I got lots of cool stuff for my B day. So, I want to thank everyone for thinking about me! And for wishing me Happy Birthday. And for loving me so much. Here are some pictures from my party. Keep reading my blog because I have lots of surprises for you now that I'm four!!!!!










Monday, October 4, 2010

I Forgot To Tell You!!

Hey all you dedicated readers it's me Noah. My mommy forgot to tell you all something really cool about me. I know I can't believe she forgot either but she's really busy most of the time. I'm doing Special Olympics!!!! Yup,every Saturday morning the whole family heads to my school for a hour so I can do my work out. The first time I went I really didn't like it. I was confused because I thought I was going to my classroom for school. My teacher was even there so what did everyone expect me to do. I kind of got upset because my routine was all messed up. And anyone that knows me will tell you
I like my routine. I was determined to get into my classroom for the whole hour. I even rolled my eyes at the volunteer. Mommy caught me doing it! Uh OH! The second time I went was a little better. I was fussy for the first ten minutes but then I did my thing. Some of my friends from my class are there too. The only thing that gets on my nerves is my little bro. He runs around my school like its his school too. But,I have to admit he does help out a lot. I get really motivated to do stuff when my bro is around. Mommy and Daddy are going to make me a visual schedule so I can see when my routine is going to change. Cause remember I like my routine.
I hope anyone that loves me will support the Special Olympics when they can because it's really important for my confidence. That's what they tell me anyway. Well gotta go.. I have a big day at school tomorrow. Can you believe my Mommy is letting me go for 6 hours a day? I can't either. I know she misses me a lot though.

Bye guys, Noah.

Wednesday, September 29, 2010

Where is Wiggle's?

Noah doesn't like the t.v show The Wiggles but he sure likes The Wiggles doll. He was introduced to The Wiggles doll at school. Every morning they have 15 minutes of free time at school. As soon as we walk into the classroom, Noah goes straight for The Wiggles doll. He looks around for someone to get it off the shelf while signing "please" continuously. Noah's teacher allows him to take Wiggles home because she said "Noah I know you will take good care of him." Her words not mine. This is how I found Noah and Wiggles this afternoon.



Sunday, September 26, 2010

Do You Want To Join Me?

On the path of hope? I have been doing a lot of thinking lately about my journey with RTS. Recently, I sent a article to the RTS list serv I belong to,regarding believing there is goodness in the human race. The article's main point was about people staring in public when you have a child with special needs. The author of the article introduced the concept that most people are not hateful and being mean by staring. They may be simply curious or willing to lend a hand if needed. There have been times over the last year or so when I have dealt with the stares. My first reaction was unlike the author's, I always assumed the person was annoyed or being ignorant. This reaction does nothing for me or my precious child. This reaction only closes the door to my son being treated as an important part of our society. It also shows bitterness within me and I refuse to live with that feeling. I refuse to turn away and sulk because a person happened to give me a look or made me feel uncomfortable. Instead I will put those feelings aside. I would rather believe that people are generally good. I would rather take the negativity and throw it out the door. For my precious son's benefit,I will do my best to look at society as a whole in a different light. I believe it's worse for someone to quickly look away than stare. Looking away, to me, means my son doesn't exist. So, I will take hope over negativity. I will hope for the best in people before assuming the worse. This doesn't mean I'm living in a fairytale world. I realize not everyone is a bed of roses but this is what I choose. Do you want to join me?

Tuesday, September 21, 2010

Noah Said What???

When I picked Noah up from school today his teacher had some big news for me. She told me during circle time Noah blurted out "cockle doodle doo". I don't even know if I'm spelling that right but you know,what the Rooster says? Anyway, she said everyone stopped and said "That was Noah." Too make sure everyone heard him he repeated himself. I looked at her with disbelief and she said "yes he said it again on the way to the potty." The image of Noah sitting around at circle time and blurting out 'cockle doodle doo" makes me laugh hysterically. I don't get it! The child's only word is ma ma besides babbling and then blurts out "cockle doodle doo." It's just too funny. I wonder what else Noah has in store for me? I'm so excited today to find out. I think he's going to fly this year.

Thursday, September 16, 2010

The Window With Two Sides

It's been a few years but I still remember
My eyes hazy and mouth held tight
Looking through the window that "appeared" to be perfect, with no streaks
All I could do is watch with a intense desire to release my feelings of fear and sadness
Month's went by and the window still stood strong in front of me
Still appearing "perfect" before my eyes
I grew to despise the window
I wanted to scream "let me in, I belong there too"
Then year's went by
The haze from my eyes faded and my mouth relaxed
The strength grew within me to confront the window
As the haze cleared from my eyes, I noticed the window had smudges and streaks
The window was full of imperfections I didn't notice before
The other side of the window was a lot like my side, with it's own moments of fear and sadness.
I gently reached for his hand and stepped through the window
Together, we have found joy,laughter, tears and sadness, on both sides of the window
We are all the same
We are all perfectly different

Tuesday, September 14, 2010

I Miss Him


I miss Noah. The school has extended Noah's day until 2.30 to prepare them for kindergarten. I miss him. I know it's the best thing for him right now and I know I should be doing things for myself but it doesn't make it any easier. Nicholas misses him too. He looks for him until he comes home. It is so hard for me to let go. I feel so empty when he isn't with us. I miss his laughter. I miss his hugs. I even miss his whining sounds. I hope the lump in my throat eases up soon. I hope this gets easier as time goes on. I know I will always miss him when he's away.

Thursday, September 9, 2010

Now That You Are Almost Four

Dear Noah,

I just got goosebumps when I wrote the title "you are almost four" I can't believe you have been on this earth and in my life for four years. Wow, what a difference you have made in the person I am today. I can't begin to tell you how proud I am of you. I will try to remind you of all the great things you have accomplished this past year. You are walking so beautifully that you are practically running. You worked so hard to get to this point and I know you are much happier with your independence. You are starting to use a communication device to make requests and the look on your face when I understand, makes my heart so happy. You know how to use a lot of signs to communicate to the people who understand you. You still love to swing, play in water, listen to music and mostly manipulate buttons. You are awesome on the computer. And you figured out how to microwave a binky yesterday. (you little stinker.)You love to play with your little brother. Your favorite game to play is taking turns opening and closing doors. The laughter from both of you makes me smile. I know you will always have a brother that adores you. You are both so lucky to have each other in this life. You are going to school five days a week now. You participate in class, follow directions and socialize with other kids. You are going to the potty sometimes at home and school. You are working hard with that challenge. You are beginning to find your place in the world. You are blossoming and spreading your wings. I am so excited to see what you have in store for us this year. Keep working hard Noah and know that Mommy and Daddy are here to help when you need us. Your strength continues to amaze me. I love you, Mom

Wednesday, September 1, 2010

Monday, August 30, 2010

Update Since I've Been Blog Lazy.

I really haven't had much time to blog lately and my motivation to blog has been horrible. But I'm back. There has been so much going on in our lives I don't know where to start. We had a busy July and August. We attended the RTS conference in July and spent two weeks in NY with my parents at the beginning of August. Yes, I traveled alone with both kids. It was hectic but went better than I was expecting. Noah was a perfect traveler, looking out the window the whole time and playing his laptop. Mr Nick on the other hand wanted to rock the whole airplane. He was not too keen on sitting on mommy's lap the whole time. The whole plane knew how he felt I'm sure. When we got to NY both kids came down with a illness. Nick had a double ear infection, sinus infection and tonsillitis. Noah came down with bronchitis. Yeah two kids on antibiotics. But we had a nice time with family. The kids got to meet their new nephew Adyen and Nana got to practice her new found signing skill. Thanks Mom for taking the time to learn how to communicate with Noah, it meant the world to me! Hopefully the kids will get to meet their new niece Summer soon too. In other news...

Noah has been doing fantastic in school. He is going 5 days a week for four hours a day. He is developing leaps and bounds since he has started. He is using the potty at school and home. Yesterday was huge, Noah took me to the potty and pointed to it. I asked him if he had to go potty and he signed "yes". Low and behold he instantly peed on the potty. I was so excited. I know we have a long road of potty training ahead but this is a great start.Noah is also signing tons more and we have started him on a low tech communication device for now. We are hoping to move onto a
Ipad very soon. Brandi, I will be calling you soon for advice!!!

Yesterday Noah and Nick had their first experience at a adventure park. Noah rode a rollercoaster and go cart for the first time. He didn't know what to think of it. I'm not sure if he was liking it or not. He just had a blank look on his face. Nick rocked the place, just like he did on the plane. I spent most of the day chasing him. Nick is a firecracker!!! We had a great day..

Here are two recent pictures of the boys..

Friday, August 20, 2010

Understanding The Pain

I can't get out of my head and heart what happened today so I figured I would write about it. Today Noah had a check up at the eye Dr. As we were walking out to the waiting room to wait for Noah's eyes to dilate, I heard the screams. I looked over and saw a Mom with her son ( around 9 or 10 years old) holding him down while he screamed. She was stroking his head as the screams got louder and louder. He was obviously having a horrible melt down that was getting worse and worse. I knew the child had special needs of some sort but was not sure what they were. He was non verbal and struggling to sit up. The room started to clear with parents that were looking away or moving to the far end of the room. The mom had her head down and wouldn't make eye contact with anyone. In that moment, I felt her pain. I didn't know what to do because my eyes were filling with tears for her. I wanted to scream back at all the parents that stared with dirty looks on their faces. I wanted to yell "you don't get it." Instead I took Nicholas and sat across from her and when she looked up I smiled. She looked at me horrified as if she was thinking "I'm so sorry. Even though I said nothing to her, I sat there in the chair across from her the whole time. I wanted to help but there was nothing I could do. So instead I cried on the way home. I cried because I wish people could understand the stares and dirty looks are so hurtful. Even though after a while your skin does thicken it still will always be somewhat painful. Maybe I cried because I could imagine that happening to me one day and hoping there would be someone to give me a smile. I hope that if you are reading my blog and you don't have a child with special needs you will choose to smile. Don't look away. Don't give dirty looks. Don't assume the parent is not doing their job. Just try to understand. You never know what someone is going through. I will not deny that sometimes it's painful to raise a child with special needs. I would be lying if I didn't admit that. And I choose to be honest with myself in regards to that. Today I truly "got it". Today I smiled and I hope that eased the Mom's pain.

Thursday, July 29, 2010

See Me Not My Disability

I was going to blog about the conference but I feel passionate about something else today. On the RTS list serv that I belong to, there has been discussion about the harsh things Dr's have said concerning our children. A lot of parent's have shared their personal stories about how their child was diagnosed. I am appalled at some of the things I have read. Dr's telling Mom's and Dad's to institutionalize our kids or just throw them away because of their disability. Or telling parent's that they shouldn't invest too much into their child because they will be low functioning. What?? Are you serious? These are professionals. If people like this can't get past differences, how is it possible to change an every day person's view on people with disabilities? I remember when Noah was a baby and our stupid pediatrician at the time addressed Noah as "Rubinstein Taybi Syndrome" rather than Noah. We never saw that Dr again. Some people are just pure ignorant. My child is a person with a name and feelings and everything else that goes along with living. He is not just a syndrome or developmentally delayed or whatever other word that goes along with it. He is Noah. All of our children deserve so much more respect than what is given sometimes. And I'm not saying everyone is like this just a overwhelming portion of our society. If only people that are so called "normal" lived like our children do. The ignorant people that view our children as irrelevant and just disabilities don't realize what they are missing. And to all the Dr's out there that told some parent's that their children will amount to nothing, Shame on you. You don't deserve to be in the medical profession. And to all the Dr's out there that have been sensitive and supportive, Thank you.

Thursday, July 15, 2010

Smarty Pants.


My son is transforming into a different little guy. Well, not all the time but mostly when he is at school. Can I just say "I love his teacher and the assistants". They are so fabulous and really have put my mind at ease. Mr Noah is sitting on the potty and actually going potty at school. Haven't had tons of luck at home but we are trying to be consistent. His teacher said every time he sits on the potty he goes. Also, as we were walking out of school yesterday, Noah's teacher asked him if he was ready to go home. He replied (signed) "yes, please". It was about the cutest thing I have ever seen. She gave him a big hug and kiss. What a smarty pants. But he is a polite smarty pants. I love it.

Friday, July 9, 2010

How Do You Deal With It?

I have been doing a lot of thinking lately about Noah's Speech or lack thereof. I have been trying to be true to myself and my feelings. Some days I don't even think about it and the thought that Noah may be nonverbal doesn't sting as much. But other days it tears my heart in two. I really don't share these feelings with many people and I was hesitant to write about them. But this is my blog where I can release any feelings negative or positive. I love with a capital L the fact that Noah is signing and getting his wants across. I love the fact that he can use pictures, a device or whatever to communicate but that doesn't compare to hearing his sweet voice. I am grateful that he says "ma ma" and I'm even more grateful that he has the ability to understand sign and other forms of communication but sometimes it doesn't feel like enough. The unknown is what gets to me. If I knew one way or another if he was going to talk I could just accept it. But the not knowing is so hard. I still don't think any parent should have to sit and wonder if their precious child will ever talk or walk? I hate it if I'm being honest. But then I feel guilty complaining because I know there are children and parents that are in a much harder place. I should just be grateful but it's still not fair. If you know what I'm feeling, I'm curious to know how you feel? How do you deal with it in your mind? The unknown? I do feel that I have long accepted the chance that Noah may be non verbal but it doesn't mean I have to be in love with the idea. But I know acceptance is vital to me. I would love to hear any thoughts.

Wednesday, July 7, 2010

Tuesday, July 6, 2010

How's Noah doing in school?

The changes in Noah since he started school are fantastic. I use fantastic because that is what is marked everyday for his behavior. I am so proud of my little guy for all his hard work. I feel comforted knowing that Noah loves going to school. Last night we told Noah he had school today. At 8.30 pm he signed "go to sleep". I was getting ready to put him to bed anyway but Tommy thinks he wanted to go to bed so he could hurry up and get to school. I really think so too. He signs "go" all morning while I'm getting him ready. The other day Noah led his class in circle time. He was the only one that matched the laminated pictures to the same pictures hanging on the wall. During his group speech therapy he sat at a table with other kids for a full hour. They were passing pictures around and the child either had to sign or say what the picture was. Noah was the last one to get the picture. His ST said the whole time he was waiting, he was signing "want, please". When it was his turn finally he signed "ball" (that was the object on the picture". All I could say was "wow" Noah sat for that long and didn't try to get up. His walking is 100 times better and he is following directions most of the time. I'm just so proud of him. When school starts officially in August he will be moved to a larger classroom. The classroom he's in now is just not fitting him developmentally. In other words he is running the show. Brag, brag, I know but I'm a proud ma ma...

Wednesday, June 30, 2010

Thursday, June 24, 2010

Taking A Stand


Tonight I went to the same fitness class I go to every Thursday night. As the music came on the instructor put on her head set and the music was wrong. Into her microphone she said quite loudly "damn I'm such a retard." I froze for a moment, not wanting to believe that just came from her mouth. My stomach turned, I felt sick and wondered if I should just walk out. But I decided to stay. I decided to stay for one reason only. I wanted to take a stand. I was not going to walk out and go sulk about what I heard but I was going to confront it head on. I worked out thinking about what I was going to do the whole time. When the hour was up I knew. I thought of Noah,Natalie, Austin, Alex, Addie, Sammy, Caden, Nathan(both Nathan's), Emma,Jesus, AnnaKate,William,Logan, Matt,Sawyer,Frankie, and Max. All of the beautiful children who share Noah's diagnosis. I thought of all of the amazing parent's and children the word "retard" affects. At the end of the class I went up to the instructor. A few others surrounded her. I told her "when she used the word "retard" it hurt". I told her "My son has special needs and so did another person who ran out crying when she heard you." I also said "you never know who you are offending with that word." She felt horrible and apologized a million times. I told her "I just wanted to make her aware that it's hurtful and I told her it's ok". I didn't want to attack her but if I could change one person's view of thinking then I was satisfied. I left the gym feeling awesome that I stood up for what was right. I did not run out of the gym crying like the other mom. I stayed. I waited. And I stood up for my son. It felt great. I said in a previous post that I would not back down from this and I won't. This post was not a rant but meant to be positive. To educate any person that uses this word as slang. It was time for me to speak up. Stranger or loved one, we all need to be heard.

Tuesday, June 22, 2010

My First Day Of School

Hey guys it's me Noah. I wanted to tell you all about my first day of school. The first thing I have to say is I LOVED IT. It was the coolest day ever. Mom and Dad told me the night before that I was going to school. When they came into wake me up, I signed "go". I was trying to make mommy laugh because I knew she was really nervous. But I have to give it up to mommy I didn't see her cry. Maybe she cried on the way home but I'm not sure. Mommy, Daddy and my little brother Nick took me this morning. I had my cool elmo back pack that I personally picked out. I did see mommy cry in the aisle of target when I pointed to which back pack I wanted. Sorry mom but I was really ready to go. Anyway I walked into my classroom and hugged my teacher and all the other adults in the room. Right away I tried to steal someone's cereal. That wasn't cool of me but I was just testing to see what I could get away with. I loved my teacher and I heard her tell mommy how great I did. My therapists said they loved me too. I totally rocked it with my signing. I signed all day and really impressed my teacher. She had tears in her eyes when I signed "thank you" before I left. I walked around the whole day and didn't even try to crawl. oh and I enjoyed flushing the toilet a few times too. When we were leaving the school I tried to get on the bus but mommy had to ruin it and put me in her car. Boo. I can't wait until tomorrow.. Here are a couple of pictures of me before I left for school. I threw in a picture of my back pack and lunch box I picked out. Later, Noah the preschooler.


Thursday, June 17, 2010

Saying Goodbye

Yesterday was Noah's last day with his therapists he's had since birth. I expected it to be difficult but that's putting it mildly. His PT, ST and OT have been such a support to me over the last 3.5 years. They love Noah to pieces but excited to see another chapter open in Noah's life. I have to admit I have been struggling trying to find peace. I am second guessing myself a lot and wondering if I have done enough to prepare Noah for preschool. I have had anxiety dreams about his first day. I know they are unrealistic dreams but it's hard to let go. I know there are a million mom's before me that have gone through this but it is still hard. Since Noah was a baby,in my mind, I have always feared the start of school. As long as he was a baby I could protect him from the world. I know in my heart that is also unrealistic. I have to let my little butterfly spread his wings. I have swallowed this big knot in my throat so many times. I pray for strength as I let go. I pray I have done my best. And I pray I have made the best choices for Noah.

Saturday, June 12, 2010

Noah Brag..

Noah has a laptop that he absolutely adores playing with. It teaches letters, letter sounds, words etc. He usually spins in his therapy swing while playing with the laptop. When we travel or drive short distances the laptop comes along. Well what I found out this morning is truly amazing. I was playing the laptop with Noah and decided to test him. He recognized most of his alphabet. When the letter would come up on the screen he would have to type it in on the keyboard. And HE DID IT. Noah amazes me everyday. Look out preschool here he comes.. And yes he is starting next week. My smart little man is going to be a rock star in his class. I'm so proud of him.

Friday, June 11, 2010

Are You A Stay At Home Mom?

Being home with your children is a very important job. It is one of the most important jobs in the world. I don't care if you have one or 5 children to take care of it's hard. If your child has special needs or developing typically it doesn't matter. As mom's we work very hard each and every day to raise our children. It's harder than most people think. So today for all the stay at home mom's I want you to pat yourself on the back. And take some time for yourselves. Go get a pedicure, manicure or just take a few hours for yourself. I met a mom recently who has 3 children (one with special needs. ) She told me she never ever leaves her children. I told her she has to so she can be a better parent. We all need to take care of ourselves. We all need to remember as much as we love our children we still have a "self". Today I say "you are doing a great job to all the mom's out there".

Thursday, June 10, 2010

HAPPY FIRST BIRTHDAY NICHOLAS

Our beautiful baby turned one yesterday. Oh how time just flew by. It seems like just yesterday I was announcing the birth of our sweet boy. Tom had to work late last night so Noah, Nick and I celebrated with cupcakes. Nicholas will have his party this Sunday with family and friends. You can see from the pictures Nicholas dove right into the cupcake. Noah on the other hand had to study it for a while before he dove in. And thanks to Rocky for cleaning all the cupcake off the floor. I can't wait to celebrate this Sunday. Nicholas, You have changed my life forever. You have brought so much joy to our family. You are the best one year old I know. Keep laughing and keep making us laugh.