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 16, 2008


Thank God for my blog today because I really need to write out my feelings. I am having a hard day today. I am having the "Am I doing enough feelings of guilt". I know most of you know what I am talking about. That nagging feeling that just won't quit as much as you would like it to. I wonder if I am being a good enough mom to Noah? Am I doing enough to help him developmentally? Am I working hard enough with him on his walking? Do we need more therapy? Is there a therapy I am missing? What about his speech? Am I doing enough to motivate him? These feelings really get to me because I feel like Noah's development is resting on my shoulders. I know logically that this is not true. Most of it is up to Noah. When he is ready to do things. I like to call it "On Noah's time". But is that just masking my true feelings? Sometimes I really do feel that it is all up to me. I wonder how I am going to spread my time with a new baby? Will I be able to give him the attention he so desperately needs? As you can tell my head is spinning today. Once in a while the guilt really eats me alive. I know tomorrow will be a new day with new feelings but right now this sucks. Thanks for reading.. I try to keep my posts pretty positive but once in a while this happens..


Our Journey said...

you are not alone! i feel like this all the time! it is harder when you have two, but each baby will get what they need. just dont hesitate to ask for help if you need it, have someone watch the baby so you and noah can do something special. we try to do this at least twice a month with mikaela who seems to be the one who needs the attention the most right now

Jessica mommy to Alex/ RTS said...

Dont try and keep your posts positive, that is why this is so theraputic....Write what you need too!
Well, you said all the right things, and so I know deep inside you know you are doing your best, and thats all you can do. Thats all all of us can do. Magically you will be able to give all your kids the time they need.
Thinking of you.

Kelly said...

Guess what...we are all thinking the same things!!

I try so hard to be a therapist and a mom. But you really need to be a mom first. Noah will get what he needs. One of our therapists told us that too much therapy is TOO much! So just take it easy and know that Noah will thrive!
Kelly W.

Cindy said...

To answer your question: Yes!

Noah is not a computer to have more therapy uploaded to make him grow faster (if only it were that easy!) He has to develop at his own speed, and he will do it with the therapy you have now.

You will have "enough" time for Noah and the baby. The baby will not notice that you spend more time with Noah (a wise woman told me to make sure the older child is taken care of first, because the baby doesn't know the difference, but the older child does!) And as you spend more time with the baby, Noah will also be spending time with him/her and learning and growing as he helps you take care of the baby. Natalie is so helpful with Konrad, and I know she would do more if I let her. You'll be surprised how much Noah will help you, and by helping, learn.


Christine said...

So hard isn't it? "Noah Time" that's cute. If there's one thing that my little man has been teaching me -it's patience. Noah will get there when he's ready.
I've been thinking a lot about the tortoise and the hare lately. In the end it wasn't the fast one that won the race and what really matters is that he gets there and that he has fun doing it.
Hang in there!



Kelly said...

Yes you are! You are a great mom for Noah and are doing everything you need to be doing! I know we get wrapped up in the thoughts of feeling we should be doing more. Remember "Noah's Time"! Hope you are feeling well and getting rest! Kelly F

Michelle said...

I had the very same feelings when I was pregnant with Andrew. I had no clue how in the world I'd care for Austin once Andrew was born. Strangely enough, Austin didn't care a thing about Andrew (give a hug then leave) and Andrew was SOO much easier to care for then Austin ever was so everything ended up being so much easier then I imagined! Even if this new baby takes a bit more of your time, it'll be good for Noah to have to figure some things out on his own. It worked for Austin anyway. Mom busy? Fine, I'll do it myself! Hang in there, I cried 'because of RTS' today too. *hugs*

Kay said...

Hi, I just found your blog today and it MUST be God that led me to this post. Because this is EXACTLY how I feel most of the time. Samuel is my 2 year old diagnosed with RTS at birth and I have a 7 month old, Gabriel. So, what would the "strong self" from your most recent post say to the "old self" of years past? Cause I am your "old self"