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.

Friday, January 30, 2009

I Am Getting Frustrated.

Today I am feeling frustrated. This is so hard being pregnant and trying to get everything done that I should with Noah. I don't know what else to do to help Noah with his walking. I am going to be honest and say at this moment I feel like a failure. I thought for sure he would be walking by now and it makes me sad and frustrated at the same time. I keep thinking that I have not done enough these past months because I haven't felt well. I feel like I try and try and then try again. I am angry at all the mom's who get it so easy. One day they wake up and their one year old is walking..Then they complain about all the stuff they are getting into or that they are running off. I just want to scream to all these mom's to be thankful that you don't have to bust your butt to see it happen. Then they complain and say they wish their little one would stop talking so much that it is annoying. God how I wish I could hear Noah talk too much. Today is just one of those days that I feel overwhelmed and a little bit annoyed with life. But in the end I am grateful for what I have just tired and don't know what else to do anymore.


Terri H-E said...

Awe, Kristi. I know those days. Words from somebody else cannot erradicate them. But I just wanted to put my 2 bits in to remind you of something you already know. Noah's ability to walk is not in your hands. As much as you would not take all the credit if he was walking now, you need to shirk accountability for the lack of independent steps, too. It's up to Noah and the mysteries of his precious little body.

When I start feeling my own boot in my own butt about where Addie is, I remind myself that my only job is exposure - I need to show her things, facilitate her experiences, but she is the one who determines which things she'll actively participate in and when. She has built in sensors about when she's strong enough to try stuff. I trust her.

Let yourself off the hook, hon. You are a remarkable mother and person. Noah knows that.

Jessica mommy to Alex/ RTS said...

I believe I just read an email from my friend Kristi, she was telling me about our sweet kids being on their own time:) I know exactly how you feel! Alex is strong enough to crawl now, he just isnt. I tell him about all the things he could be exploring, if he would just crawl. I have no idea how I am going to help him when this little on comes, oh my goodness I can think about it.

We will do it though, and our kids will do what they will do when they do it.

Feel encouraged today! Love you, cant wait to meet you!

dont even get me started on those moms who complain about talking and walking, I want to rub their faces in the mud!

Kelly said...

Ahhh, Kristi! Teri is right, Noah's ability to walk or talk is out of your hands. It was hard for me to type that, because I usually have the feelings you talked about in your post. In November, Max seemed really ready to walk. . . I thought he was going to be walking by Christmas! That was a big NOPE! He is not interested anymore. He is happy with crawling. And as far as talking. . . arg! I would love to get a ma, ma, ma out of him. You are doing great Kristi! Noah is loved, loved, loved! And you are going to do great with two kids. . .or three. . . or four. . . Take care! Kelly F

Myssie said...

hang in there kristi! Sounds like you are just having one of those days. You are a good mom and you are doing all of the best thngs for Noah. Noah is loved beyond belief, that is all that really matters.

Kerri H said...

I agree with Terri..great advice..our kids are a mystery...when I felt frustrated with Logie not walking..I always blamed it on him working on or concentrating on something else..then he'll go back to working on walking...maybe that's what he's doing..hang in there..I'm here if you need to vent! :) Hugs

Jacqui said...

Waiting is really hard. I can't really add anything to the other brilliant comments. I know that sometimes even though I know all that truthful and good advice I still find it hard to wait. I have had to let go of my own need for Matt to progress.

I really do think you are a thoughtful and deeply loving mother. I also agree with the others who say that you should be gentle on yourself.

And I also get SO MAD at mothers who just don't know how blessed they are that their kids are developing so easily.

Its a good thing you can let out al these feelins, Blogging is really good for our emotions.

BIG HUGS - you are doing great.

Michelle said...

Oh have I been there. Now that I have Andrew who is quite typical, I don't even think about complaining about his talking or running around. I love it. Not that it's good to put a timeline on our RTSweeties but Austin didn't walk till 3 days before he turned 3 so at Noah's age, I was right where you are today. Keep your chin up, you aren't wonder woman and no is requiring you to be her either. Just be Kristi, Noah's mom.

Cindy said...

Sorry I'm reading this late...I hope by this time you're over your funk and feeling better! I'll second everything everyone else said, and remind you that now you're the mom to two kids, who each need 100% of your time. I often worry about shortchanging Lukas and Konrad because of the care I "have to" give Natalie. Then I *breathe* and remind myself that each child has his/her own needs, and I do the best I can with what God has given me. Our children, typical and special needs, are resilient. And each will do it in their own time. We can help them along, but they have to decide it's time to move to the next step. We can't do it for them (like when I was trying to force Natalie to eat, before I knew she was aspirating).


Tena said...

((hugs)) girl. I remember that feeling, and pregnancy is playing a big part of that. I'm sure you'll appreciate SO MUCH with this 2nd little boy and I know you'll be all the better for it...it's just so hard in the mean time. Thinking of you.