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God, Autism, Anger...Oh My!

8:27:00 PM Posted In , , , , , Edit This 0 Comments »
So I have a counter on my blog that will tell me if and when people stumble upon my blog through search engines. Usually Google is the search engine that brings the most people in. Well apparently today a Google search led someone to my blog. This is what they searched for:

03/27/08 10:54:12
how to stop being angry at God for gaving me an autistic child (Google)

Now for me, this brings about a mix of thoughts and feelings.

Am I angry with God because Gavin is Autistic? At times, yes I am. I wonder why our little boy was taken from us. Why he was so perfect and developmentally on target (for the most part) and then *BAM* he was gone. I wonder why God thinks I can handle so darn much. I guess maybe I question God more than I'm angry with him. Although I don't know that questioning him is any better.

Do I habor angry or hatred toward God for the challenges he's place before me? No. Again, it would be nice if he didn't have quite so much faith in me and my abilities to handle stuff. But I'm not angry for the challenges I've endured. Those challenges have made me who I am and while I may not always be happy with who I've become; for the most part I'm pretty comfortable with who I've become.

If given the chance to change it all, would I? Depends. There are certain things that I did out of ignorance (signing my divorce decree without asking more questions, blindly trusting attorneys because I thought they knew better etc) that I would change if given the chance. There are things that I did and I knew in my gut at that moment were the wrong choices for me to make (saying "I do" to Nick being a HUGE one). Those I would change if I could. But to change it all? If it has to be an all or nothing choice, I choose to leave it alone. There's no way for me to know what I would loose by changing things. That's not a risk I'm willing to take.

Now, please understand that simply because I am not angry with God because Gavin is gone does not in any way shape or form mean others should not be angry. Anger is part of the healing process. I've been angry. I'll be angry again, I'm sure. Everyone is entitled to their own feelings. Everyone has to deal with this situation and process in their own way. Whatever that may be.

For the most part, I'm not angry with him for Gavin's Autism because I don't know what he has in store for us later. I don't know why he placed this angel in our lives. But I'll struggle and muddle my way through until we figure it out.

Bed Rest ~ Day 17 Check it out!

3:53:00 PM Posted In , , Edit This 3 Comments »
Okay so I woke up this morning with a migraine. I took my meds and then took a nap. And guess what! Yup, I woke up from my nap with another migraine. I just can't win today! lol

Well ladies and gents it's that time again. I've found some new blogs that I just love love love! So that means I feel a desire to introduce you. I urge you (very strongly) to click the links and check them out! :) Without further ado...

London McCalling ~ Shannon, Matt (her dh), Waverly (I just adore this name!) and Oliver are all from the US but have relocated to London, England when Matt was offered a job (possibly transferred). What began as a blog about their new lives in London has also become a blog about the family's struggle to find a diagnosis for Waverly and to ultimately cope with the diagnosis and how it effects them all as a family.



Friday, March 21, 2008
We Have A Diagnosis
Waverly has mucopolysaccharidoses (MPS), specifically it is known as MPS III or Sanfilippo Syndrome. Even though we have been waiting anxiously for a diagnosis, nothing could have prepared us for this devastating news. I am not emotionally or physically capable of writing more at the moment. Here is a link for further information:
http://www.nlm.nih.gov/medlineplus/ency/article/001210.htm


I went back yesterday and read her blog from beginning to end. Her family is beautiful and I feel for her during her struggle to find and cope with a diagnosis for Waverly because we've been in a similar situation with Gavin for the past 7 years.



What the heck was I thinking?! ~ This is Nikky's blog. Nikky is married to Chris, a military officer currently stationed in Texas (I have a huge soft spot for those serving in the military but that's another blog.), and currently pregnant with their first child.




February 06, 2008

Transitioning from Myspace to the Open Waters of the Net
at
11:57:00 AM
Blogging on Myspace is easy. No one reads them. Ever. Well that is unless you have friends who seem to hang on every written word you write. What the heck could I possibly say that is that freaking important?! Nothing that I know of!!

Mostly I have ranted about my trials and tribulations of infertility, the continuing shifting waters called community college, my periodic rants about people I find incredibly stupid (like my recent rant about a cult-like "church" from Kansas). Although I have raved about incredibly brave people (men and women serving in the military) and an outstanding group of people who I recently had the privilege of seeing
The Patriot Guard Riders. I am not going to say that some of my ranting (and raving too) has not been without some controversy. (I know there are at least 3 people who will read this, roll their eyes and laugh)

So, here I go. Making my world wide web debut into blogging. No flameing (at least no real live flames) please.



Nikky is another due date buddy that I have found with God's help through blogs. Her original due date was July 25th (two days after me) but has recently been moved to July 18th (just as great a day since it happens to be MY birthday! lol). She is currently a college student working to find a balance between her roles as wife, student and mother-to-be. Her blog strikes me partly because we are "due date buddies" but also because we seem to have similar personalities. Plus she's just cool. :)

There now you have been formally introduced. So...Go! Read! Comment! :)

17 down ~ 118 to go

I got a second to update......

3:46:00 PM Posted In , , , , , , Edit This 1 Comment »
Today has been consistent with just about everything. Gavin is REALLY struggling right now. We are pulling our hair out trying to figure out what to do. Lizze and I are both extremely sleep deprived. I have been up with Elliott on and off since 1:30 this morning. I fear this is all starting to effect him. I can see how he is effected by all of this despite what others might say. Elliott Richard is effected by this......

Today has been rough because Elliott really wants to hang out with Gavin and Gavin wants nothing to do with him most of the time. It's heart breaking because Elliott just looks so devastated by that.

We have an emergency appointment with Dr. R's nurse practitioner in the morning. We have to do something to help Gavin find his way out of this. Hopefully we can adjust some meds and that's all it will take. School starts back up on Monday and at the rate he is going it will be a complete disaster.....

Gavin is really upset now because his Grandma M. refuses to see him. He hasn't seen her or his father (and I use that term loosely) in almost 9 months and he really misses them. We used to make excuses for why they did the things they did. We don't cover for them anymore. We tell Gavin that "Grandma M. and his daddy are both adults and we cannot make them do anything". We tell him that "he has done nothing wrong but sometimes grown-ups can do things that make us sad even though they loves us".

We know he is better off never seeing them again. However, it's important to him and therefore important to us. The contact will always need to be supervised in a controlled environment because neither one can be trusted and Gavin needs to feel safe. But outside of that we completely support Gavin's desire to see them.

She is currently refusing to see him on "principle". Real world translation: "She will only see on her terms because supervised visits are benegth her". His father has simply disappeared. That for me is very sad. I can honestly say if I were in her shoes I would do whatever it takes to see my kids or grand kids. I would cross ocean's, climb mountains and certianly drive 2 hours even if I could only see them a few minutes...YOU DO WHATEVER IT TAKES TO SEE YOUR KIDS..I just don't understand people.......

Well that is my rant for now. I had to stop typing for a little bit because Gavin was going after Elliott. Everything is ok. Gavin was freaking out because Elliott brushed against his hair....I am so tired... I'm sure Lizze will be posting later......


Thanks for listening.......

Today is a day of processing...

2:21:00 PM Posted In , , Edit This 1 Comment »
I've been thinking a lot today. Let's face it, there's not much more for me to do anymore. Plus when I have to take my migraine meds, well, they tend to get me thinking and feeling chatty. I don't know why. Anywho...While I've been thinking I've been trying to process some Tiny related stuff.

I am 23 weeks and 1 day pregnant. My pregnancy is considered a "high risk" pregnancy. That means the risk to myself and Tiny is greater than found in a "typical" pregnancy. I am currently considered in preterm labor. I am on medications and bed rest to try and fight the preterm labor and allow me to make it full term. It is questionable as to whether or not I will make it full term. Here are an estimates of Tiny's chances for survival:

23 weeks ~ 17% (10% chance at life w/o any prematurity related disabilities)
24 weeks ~ 44% (40% chance at life w/o any prematurity related disabilities)
25 weeks ~ 61% (50% chance at life w/o any prematurity related disabilities)
26 weeks ~ 72% (60% chance at life w/o any prematurity related disabilities)
27 weeks ~ 72% (70% chance at life w/o any prematurity related disabilities)
28 weeks ~ 85% (80% chance at life w/o any prematurity related disabilities)
29 weeks ~ 88% (90% chance at life w/o any prematurity related disabilities)
30+ weeks ~ >94% (100% chance at life w/o any prematurity related disabilities)

So if I were to give birth to Tiny tomorrow there would be a 17% chance of survival. That means there is a 83% chance that Tiny will not live. Also they wouldn't use heroic measures because the age of viability is 24 weeks in the state of Ohio. Although I just did a bit of research and found that in the state of Ohio the age of viability is actually 20 weeks although this is not often the "practiced" age, meaning that technically they can sometimes assist a fetus in survival at 20 weeks but the odds are less than 1% depending on the size and weight of the fetus at birth.


There seems to be some confusion among family and friends as to the exact nature of our current situation. Allow me to try and clear that confusion up.

My pregnancy is a gift from God and a blessing, I have no doubt of this. However, my pregnancy is also in a constant state of...shall we say crisis. At any given moment the medications could stop working and my preterm labor could reach a point where it can't be stopped. At 23 weeks it's, unfortunately, all but guaranteed that Tiny will not survive. And if Tiny did survive, survival isn't any kind of promise of a quality of life.

Some feel we are being overly cautious or "making a big deal out of nothing". I assure you, that is not the case. I may be in a state of "constant vigilance" but that is simply because I am currently the only one who can speak as Tiny's advocate. No one else knows exactly what is going on physically with us. And I tend to feel that it's better to be safe than sorry. I would much rather find out I have an infection or what have you before hearing that I'm in preterm labor or my water has broken. However, I would never forgive myself if I didn't go and get these things checked out, only to discover later that I was right and we lost Tiny because I didn't speak up.

Ah...true love...

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