2.16.2009

H E double hockey sticks

Facts:

1. I can't sleep. I have been having issues with sleeping for about the last 2 weeks. There is too much going on in my brain and I can't get it to slow down enough for me to sleep.

2. I am supposed to be on a diet, except for the last few weeks I have been eating everything in sight.

3. It's come to my attention that I may not find resolution for Carson. It maybe a fact that there may not be any treatments, therapy, or whatever for her and I will have failed her.

4. HOPE - I am supposed to be holding out for HOPE - that they WILL find a resolution for Carson and we will all be in a better place because of it.

5. Did you know that Sensory Processing Disorder is on the Autism spectrum? And even though she may not "test positive" for autism, she has a number of autism traits? Just a fact.

6.That I feel like a failure to my children because I can't help them in ways that I should be able to.

7.That I feel like I am writing this stupid blog for all my imaginary friends because no one comments any more.

8. That I am not sure if taking K and C out of Dr. F's care is truly the best choice I have ever made, and if so What do I do about R? Keep my foot in the or let it hit us in the ass on the way out?

9.That I get so irritated when all 4 of my children see a Miller Lite beer sign and start chanting "Daddy's beer, Daddy's beer......" in harmony.

10. That I am so tired of fighting with kids, husband, and doctors...why can't they just all do what I ask?

11. That the back of my neck and shoulder have felt like cinder blocks for the last 2 week and the never mind the splitting headache that bounces back and forth between all my thoughts.

12. That I have been a lousy cranio sponsor the last few weeks because I can't keep my own shit together.

13. That I feel like it's been my calling to help others out in a time of need and push my own shit far back in the corner and reclaim it much, much later. But can't. See # 12

14. That I want so badly to seek out the NS in Iowa, but don't want everyone to think I have totally lost my marbles, and am just taking my children on a joy ride. BECAUSE I'M NOT!

15. That St. Jude's research hospital is not for chiari or cranio kids. Neither is the Shriner's hospital. So stop asking me to look into it please. Thank you.

16.That rocking violently back and forth is not NORMAL. Especially when she knocks a picture off your bedroom wall.

17.That I feel like I am running around in circles and am getting no where quickly!


That's all.

12 comments:

Anonymous said...

I have read you post today and #1-I wish we were closer so we could actually meet and #2-I wish we were closer so I could give you a great big hug!!!! Keep your chin up no matter how hard things may get! Julie in Seattle :)

Kath said...

Cindy,
You do a remarkable job, and I can tell you conclusively that you have in now way failed Carson, or the other children! I hope when/if I am blessed with children I can be half as much of a brilliant advocate for them as you are!

And, if your instinct is telling you to go to check out the NS in Iowa, do it! They are your children, and you know what's best, and anyone who belives otherwise can go to h-e-double hockey sticks.

And, even though I may not comment as much, (Blogger doesn't like my computer so much), I check your blog, and pray for you all daily!

All the best wishes in the world are flying across the atlantic from me!
Kath

Angela said...

I'm still out here in Blog Land - and check you daily. Life can be very overwhelming ... and you know from your kids that when you don't get enough sleep it is even worse! You've got really big decsions and I don't see how you couldn't constantly be questioning yourself -- I know I would. Just keep praying for guidance -- and listen to that little voice -- it's probably God talking!

Anonymous said...

Hi my friend!!!

I read your blog daily :)

I only have 1 bit of advice....and it's because the past year I've had horrible trouble sleeping because I can't "shut my brain off" to get any sleep!! Well my brother introduced me to this stuff called CALMS FORTE. it's a homeopathic sleep/anxiety pill!! it doesn't have a sleep aid actually in it, but what it does is "shut your brain off" so you can sleep!!! I've been takign it and things are better....i fall asleep faster and stay asleep!! you can get it at walgreens now! and it's not habit forming like sleeping pills, and it doens't knock you out like sleeping pills, so if you're needed in the night from kids you will still beable to hear them and wake up!!! seriously, try it!!!

2nd my brother is going to school for acupuncture starting in the fall......his focus is going to be helping kids get off of meds, primarily his students that are on the autism spectrum.....let me talk to him about C and the rocking! his best friend has been in practice quite awhile now and he can talk to him......acupuncture and chinese medicine are amazing things!!!!!!!! maybe you need to try that route if you aren't getting answers from drs here!?!?!?!

love you!!!!!!!!!!!!!!!!!!!!!!
Joy

Kristen said...

I'm so sorry Cindy! (((HUGS))) Regarding her rocking, why dont you video tape her doing it and post it for us to see. Many of us have experience with Autism Spectrum Disorders and it would help to see exactly what she's doing.

Anne said...

(((((CINDY)))))
I'm sorry you are feeling so down. I know when I feel like this(we ALL do!)...there is not much that can be said to make me feel better. SO I won't say the "typical cheer you up crap"!!! I will say that I'm here for you, and I will be calling to harass you!! I have never been to Iowa, that I remember...but would gladly push my issues into a corner and come with you. Anytime. Seriously.

Dutch said...

Hi Cindy,
I check up on your blog everyday, everytime I read a post I think of how remarkable you are as a mom, a wife, and a friend. I always think to myself how much strength you have.
I wish I could help in some way, you are all always in my prayers.

Jodi said...

Oh Cindy,
I didn't know you were going though other things with Carson. You are a fantastic mom and should never feel like you have failed them!! You have a plate that is overflowing and with a lack of sleep that has to be even harder. Also, you have been a great cranio sponsor to me- meeting with you a few weeks ago meant so much to me. I know you are busy, but you took the time for me. Thank you! I would take some benedryl tonight, sleep good, schedule that apt in Iowa since it will continue to be on your mind (more opinions NEVER hurt!), and go get a massage:) It sounds like you are going on vacation very soon, have a wonderful time!!
Hugs!
Jodi

Anonymous said...

Cindy,
I check your blog daily and have never commented before. I keep tabs on your family because you and how you actually do keep it all together is an inspiration to every other mother. It is easy for the rest of us to see how God is in charge at your house. I'm glad you finally let some of this frustration out! I was beginning to think that you were the only one i knew that never had a breakdown! Even though I don't know you I'm always thinking about your fam!

Michelle said...

You know, the thing about autism is - there is no "AUTISM"

it's just traits that some people have. And they don't have all of them. It's an umbrella diagnosis. So, even if they think she does have some level or type of autism ... well, that alone doesn't help.

I hope the neuro can help - having those videos to show him is a great idea!

Lost A Sock said...

Hang in there, friend. We may be too quiet around here sometimes, but everyone is here and surely listening. I'll cross my fingers for your new appointment. Give it a shot, and if he can't help, go wherever you need to go. It's not crazy to seek help for your kids, even if you have to travel half way around the world. ((hugs))

Susan said...

Hello, my name is Susan Breidling and I work at the headquarters for Shriners Hospitals for Children. Your blog popped up on an Outlook Alert because you used the term "Shriners Hospitals." I read your blog and wanted to let you know that there is currently a physician at the Chicago hospital that is working on a study for craniosynostosis. If you would like more information, please give me a call at 813-281-7153.

Best wishes to you and your family.

Susan Breidling