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.
Thursday, June 24, 2010
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
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
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 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
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
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.
Tuesday, June 8, 2010
Saturday, June 5, 2010
Wednesday, June 2, 2010
There is a saying that says "Life is not measured by the amount of breaths we take but by the moments, that take our breath away." This is so true and I thought of this saying standing on the beach holding Noah's hand. Over the weekend we took the kids to Hilton Head to celebrate Memorial Day weekend. We had a fabulous time but there was one evening I will never forget. On this particular evening we were all swinging on a bench swing near the beach. Noah decided he wanted to have some alone time with mommy, so he grabbed my hand. I let him lead me to where he wanted to go. He had a look on his face like he was on a mission. So, he walked me down the path to the beach and all the way down to the ocean. We were both in our clothes we were going to wear to dinner but it didn't matter. He held my hand and took me further into the ocean until the water was up to his knees. With each wave that came towards us, the anticipation on Noah's face grew stronger. I have never, ever seen Noah with so much joy on his face. After each wave hit us Noah's grip grew stronger on my hand. His laughter seemed to be making the waves come faster. It was like no one else was on the beach but me and my little guy. I couldn't stop staring at his smile because I wanted to always remember how he looked. I took a picture with my mind and there it will always stay. Our clothes were soaked and we didn't care. Nothing mattered except being in the moment. Loving the moment we were in. And letting that moment take my breath away. That is what life is all about.