Friday, November 7, 2008


I don't have a clever post. I don't have a lot to say. The truth is, I have been discouraged. Its probably due to the lack of sleep, in fact I'm sure of it.
A few weeks ago I was hopeful that Alex would be crawling by Christmas, and while there is still time, its not probable.
While I am soooo happy that he took those bites of the graham cracker, he hasn't wanted to since. Congestion is the culprit, but it feels like we just took five steps back instead of the traditional two.
I'm tired, and I feel like I'm in a rut, the not mobile, not eating, not drinking, throwing up, tube feeding, not sleeping rut.


angie said...

Here's hoping that you can dig out of the rut soon. I completely understand the getting into a rut thing. If I can lend a hand to help pull you out let me know. Emma started crawling the one night that I had finally gone out to do something with my girlfriends (wouldn't you know it...she did it for Dad). He will do it soon...I just know that he will. Hang in there!

Kristi said...

He will crawl.. Don't worry. Noah started crawling a few weeks before Xmas so you never know. Alex may give you a really cool Christmas present. I do know how you feel I am patiently waiting for Noah to walk. I thought for sure he would walk before he turned two but he had other plans. Its not good for us to put a time frame in our mind because that is what causes disappointment. Let the time frame go.. Lots of hugs and thoughts your way today.

Shari said...

Oh Jessica: I hear your frustration and tiredness. He will crawl! I really belive that! No sleep is so difficult and wearing on a person in all ways. I pray that you can get rest soon. I will pray every day asking God to give you rest and for Alex to sleep. Hang in there!

Cindy said...

Hi Jessica! I'm praying for your encouragement. I think you're right that the lack of sleep is getting to you. Is there any way someone could come over while you take a nap during the day? Do you have respite, to use it for this purpose? Having a couple good naps really helps me feel better. Natalie hit a lot of plateaus, where she wouldn't improve for a long period of time, and then suddenly she would bump up and do a bunch of things all at once. I think Alex is saving a bunch of achievements to spring on you all at once.


Myssie said...

I am praying for you. ((Hugs))

ps. CALL ME!! Anytime that you need to, you got my number!

Marissa said...


I have been lurking on your blog for a while. You actually commented on my blog
( back in July when I posted that her geneticist thought she might have RTS. I had actually been reading your blog for about a month by that point and never got around to commenting back to you.

I just wanted to say that I love the kind of special mommy you are. You tell it like it is, good, bad and ugly. Thank you for your honesty.

I can only offer words of encouragement to you. You are doing such a good job with Alex, as well as with Noah and Joel. You can tell those boys know how much they are loved. That, after all, is what really matters in this life.

God Bless,


P.S. Still no diagnosis of RTS, however, it is still on the table. We are waiting for funding to cover the blood test.

Kelly said...

I just want to let you are not alone! I want Max to walk by his 2nd birthday and with it approaching next week, I know it won't happen. BUT I have seen improvements with him on his feet. And the feeding issues!! I hate feeding issues!! Just when I celebrate him handling textures better and swallowing something new, the next time I give him the same thing, he has troubles with it. Thinking of you! I hope you get some sleep soon. . . I think that will make things much better.

Bobbie said...

(((HUGS))) and prayers

Kelly said...

Best thing about a rut can only get better! :)
We are on a roller coaster. Some days are so much better than others. I know we can't compare our sweeties but but AK did not crawl until 19 months and she is still crawling at 30 months.
Did you redream the clunker???

ANewKindOfPerfect said...

Oh, the ruts are so deep and strong holding. I hate them! I hope that you emerge from the rubble soon. It's hard trying to remain optimistic and yet not be realistic. I believe that Alex will crawl. Give him time and encouragement, and never give up. My peanut didn't crawl until she was 3.5 years old!

Finding Normal said...

I hate that rut. You'll get out of it soon, and the fact that you were there will make the achievement that much sweeter. Addison was stuck all summer long, even though I was working with her more since I was home. We decided to increase her PT to twice weekly, and one session later she figured out how to get into sitting all by herself sort of by accident one day. And now we're out of the rut. She's still not crawling, but it'll come eventually I hope.
Anyway, hang in there. Don't worry about Christmas. If he's crawling then, he'll be all into the tree. ;)

Patyrish said...

I so feel your pain. We are in the same rut.

tomorrow will be better, I say eat a tub of ben and jerry's and that will make things so much brighter!

Cathy said...

Oh I will be praying for rest. We know what a difference it makes. I am sorry he is going through all of this. It is so funny how some days are so hard and other days look so bright. You are in our thoughts and prayers.

The VW's said...

I'm right there with you! Gavin hasn't been sleeping well, he's been sick and his gagging seems to only be getting worse!

I'm so sorry that you are feeling so "stuck." I know what a horrible feeling that can be! I'll be praying for you and hoping for better days ahead! Hang in there!

The VW's said...

Oh, I forgot to add that I left an award for you over at my site! :)

Jacqui said...

Hi Jessica
I know it was a while ago that you wrote this post, and you are hopefully are feeling a bit better. But I had to respond cos mMy heart really connected with you. The waiting is hard, hard, hard. Somedays its fine and then otherdays it is just so so so frustrating. I think our society at the moment is so wired for forward movement, progress and change. Our society has lost the art of being...of stopping to smell the roses. And so we too have lost this ability - we need to relearn it. Our RTSweeties are good at helping us learn this :)

I also know that being tired is a messes with your emotions and ability to think rationally and clearly. I am learning to tell myself not to take my thoughts too seriously when I am tired. I'm praying that you will find ways to get a bit more rest - I know that is a challenge but my God can do the impossible so that is my prayer for you.

My last thought is that when I read the comments by moms on the RTS list - those moms who are further down the road than us - I sense that they have a peace and serenity about them regarding their kids development. I think they have grieved and mourned the loss of a child developing at a hoped for pace. It's almost like they are no longer affected by the kids slow development. I long to get to that place. I know that i have to give up my own dreams and hopes and needs to find that true peace of accepting my Matt for exactly where he is at.