Monday, January 19, 2009


Daniel and I have today off, but lainey doesn't (they are trying to make up for days missed due to the hurricane). I had plans, big plans. I was going to clean, run errands, make phone calls that were overdue, return emails that were sent to me days and days ago....

And then I remembered why I like working these days better than staying home. It is 11 A.M and I have been up since 7. And this is a list of what Daniel has accomplished on his day off:

1. Spill (or rather, wait till mommy is not looking and POUR) a brand new, very full gallon of orange juice all over the hardwood floor. (I know, you are asking, why did you let him have access to the juice?...I didn't and I still have no idea how he got it and how he got the top off)

2. Pour a bowl of popcorn all over the floor. And then run through it, scattering it and crushing it into tiny pieces while mommy tries to clean it.

3. Adamantly request (in no particular order): juice, more juice, popcorn, more popcorn, popsicle, cookie, cheese, eggs, more cheese, more popcorn, more juice, outside, outside, outside, 'ax and uby' (Max and Ruby cartoon), more ax and uby, fix train, shoes on, shoes off, shirt on, shirt off, outside, outside, outside, more popcorn, popsicle, cookie, popsicle, get the picture....I left some out. And by 'adamantly request', I mean that when he doesn't get it, he screams, yells, and tries to find something to break. He has gotten very good at asking for what he wants and is now in the process of figuring out that just because we rejoice over him asking for things, doesn't mean that he always gets it.

So, no honey, the house will not be clean when you get home.

I did get a couple of things accomplished, though. I posted another blog entry! (and got to vent in the process). And I got the details ironed out for Daniel's 23 hr. EEG on Wednesday. So I thought I would let anyone who is interested in praying, know what to pray for...

1. Please pray that they will be able to get the electrodes on with as little stress and trauma as possible (the last time, I had to get on top of him and pin him down with my whole body, which caused screaming until he almost stopped breathing for a minute).

2. Please pray that he will 'forget' that the electrodes are on and that I will be able to distract him for all 23 hours so that he won't screw up the test by trying to pull them off (and for energy and patience for me to be able to do this)

3. Most importantly, please pray that he will have at least one seizure that they can get a clear picture of.... and that the test will give them an accurate picture of what kind of seizures they are, what exactly happens to his brain during them, and how often he is having them.

Thanks friends! Oh, we go in 7:30 a.m. and they start putting the electrodes on at 8am on Wed. We will leave 23 hrs. after they start monitoring him (which will probably be 7:30 am on Thursday at the earliest).

Saturday, January 17, 2009

Interesting Moment inTime

I don't want to say that something about me and my family has anything to do with this weekend and the historical moment that is about to take place, but just so you know...

Daniel Max Sims was named after Daniel from the Bible and Max, my grandfather, both after their bravery...most of you know Daniel's story, but not Max's. Max was in the army national guard of Alabama and a green beret (if you know anything about what is what in army history, then you know green beret is hot stuff). Max was pretty high up when MLK Jr. started raising hell in Alabama (or AB as my dear friend Mark likes to call it). As a matter of fact, we thought we might see Max in Forrest Gump, when you see Tom Hanks imposed on the news footage of the african american students standing in the doorway of the University of Alabama. Among the many historical moments my grandfather was a part of, this was one that is most discussed. The governor of Alabama stood in the doorway refusing to let these students in, and the President ordered the national guard (cue my grandfather) to order the governor to stand aside. There was one man above my grandfather in this (and other significant) operations during these turbulent times. But my grandfather was the only one in charge who allowed his men to cover their nametags (because of fear of retribution on thier families for protecting MLK and his followers). Yet he refused to cover his. Yes, the name Max Milton screamed loud and proud in those turbulent times in Alabama. He was often the one chosen to interview on local and national newscasts, but cover his name, he did not.

When I got married, Alex thought it was partly a southern thing that I didn't want to change my name to Amanda Jeanette Sims as oppossed to Amanda Milton Sims (since he is Alexander James Sims and apparently the tradition in Texas is to drop your maiden name, he thought it would be cool if we had the same initials). but in reality, I wanted to cling to the one thing I could count on as Southern pride....and that being that Max Milton would not cover his name when he was doing what was good and right....even if it meant endagering his family.

So, you can see how one day right before I got pregnant with Daniel, I said, "Alex, I don't know if our next baby will be a boy or a girl but at some point we will have a boy and his name will be 'Daniel Max'. You see, I was suppossed to be a boy and my name was going to be Daniel Max after the bravery of Daniel of the Bible and Max of the Miltons. But my parents had 3 girls and I have all girl cousins and no one had claimed it yet, so there you go. Alex struggled with the fact that the name 'Max' was not a name in and of should be short for something like 'Maximillian'. But Max's name was Max, short for nothing. Lo and behold I soon became pregnant with Daniel Max. And I can't imagine anyone my sweet precious grandfather could be more proud of to be his namesake. And to top it all off, Daniel Max was baptized on MLK's birthday....and we didn't plan it that way. It doesn't get any better than that.

So, here is to Daniel's baptism anniversary! Sweet baby boy, I can't imagine anyone better or braver than you to take on your great grandfather's namesake...autism and all.

And just to be political for a moment, no I did not vote for Obama...simply for the reason that I can not vote for someone who is for abortion because I was told in the beginning that Daniel would not live and that i should abort. But now that the vote is over.......if someone dares to touch a hair on that man's head, I will hunt him down and kill him. Because if I have to have a pro-abortion president, I will move on and rejoice in the fact that my grandfather was brave and strong enough to not cover his nametag so that Obama could one day be president.

(And since I'm being so political, Mr. Obama, if you could be so kind as to turn an eye towards the Texas special education situation, I would be forever would Max and Daniel Max....thanks)

Monday, January 12, 2009

Speaking of Quotes

I know I just said in the previous post that I am not a big quotation person, but I have another one.

I like to read and I read a lot. I am not saying this to brag, because I only like to read non-fiction and I rarely read the same book twice. I will read anything if it is a story and I haven't read it before. So the majority of my reading has not been educational in the is my escape. So, anyway, once upon a time, my husband asked a BRILLIANT friend of ours (he taught at Harvard) one of the best random questions I have ever heard: "If you could read any book twice, what would it be?". As I mentioned, I am a book slut, so I rarely go back to the same book....but because I read so much, I know the difference between a well written book and one that is crap. But I have always had a hard time answering that question. Until I read a certain book that almost literally took my breath away: Peace Like a River by Leif Enger.

It sounds like a Christian book, doesn't it? But I am not necessarily sure that it is or that Mr. Enger is a Christian. But anyway, I am re-reading it for the third or fourth time (a record for me) and I always get my breath taken away by the same quote each time I read it. And it occurred to me when I read it this time that it really applies to a lot of things I have been going through lately. Here is the quote:

"It is one thing to be sick of your own infirmities and another to understand that the people you love most are sick of them also. You are very close then to being friendless in the world."

Somewhere along middle school or jr. high, I developed debilitating headaches. I had major jaw surgery that put me in the ICU, and I had more than the average flus, colds, etc. My sister and other family members who were never sick began to make jokes. I could see where they were coming from...what a bummer to be at Disney World and have to go back to the hotel because your sister suddenly couldn't walk because she was so sick. But I also had no control over it and was so hurt that they couldn't see I wasn't making it up.

A couple of weeks ago, our community group had our first get together of the new year. It was girls night and for the hundreth time, I sat down to write the email saying i couldn't go. I had Daniel's ARD the next day and I already knew that I would be using every spare minute preparing. But instead of writing an email talking about Daniel's ARD, I wrote about how I had told Alex he could go out and watch the football game. I had said he could do that, and there had been some talk about switching girls night to guys night because of the game....secretly I hoped it would be switched and then I wouldn't feel guilty for missing. Long story even longer, it didn't get switched and of course I didn't want alex to look like he was saying, 'you have to stay home so I can go out" when he was doing the exact opposite. So I had to write another email and say sorry, I wasn't completely honest because.....I couldn't fill in the blank. Why couldn't I say the real reason? It was a legit reason that would make complete sense to everyone. I think I found the answer in the above quote...and I think this is also the reason why I don't blog as much. To me, the most hurtful thing would be to sense someone doing the internal rolling of the eyes as I mention yet another thing about Daniel. (I am going to write another post on how I struggle with worrying too much about what other people think later....).

The beautiful thing about all of this is that with Daniel's disease, I don't have a choice. It doesn't go away and the grief and issues come up at such random times. I put myself in a predicament like I did with my community group, and then I have to come clean and say, 'here is what is going on'. and of course my sweet friends say, 'we love you and we need to hear what is going on or we don't know how to help you'. They show me the love of Christ, who loves me even when I am repetitive and am whining about the same things over and over again. And in showing me the love of Christ, they teach me that I will never be friendless. Because they are human and sinners just like I am...they could very well roll thier eyes (and probably be justified in doing so). But there is One who will never be sick of my infirmities. He knows more than me what it is like to truly feel friendless in this world...and He died for me.

Now, if I could just remember that fact every second of every day, life would be perfect.

Friday, January 9, 2009

New blog for a new year

I am not one for resolutions. They never work, and why make them on January 1st? If you are a teacher or student or even a parent with kids in school, it makes more sense to start them in August. Lainey's school does not disregard last semester's tardies just because I made a resolution of no more tardies for the new year (which I've already broken, by the way). But as I read all of the end of the year blogs with highlights and resolutions, it occurred to me that I wish I blogged more. It is so hard for me to actually publish a post. If I just wrote out my thoughts and hit publish post, I would have a lot more entries. I have lots of 'drafts', but I always feel like I have to read and edit and make it perfect before I publish.

One of my favorite quotes (and I am not really into quotes usually) is this:

"Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keep what is worth keeping, and with a breath of kindness blow the rest away."
-- Dinah Craik

That pretty much sums up my life, I think.

If I just poured out all my thoughts clicked publish post, blogging would have a lot more purpose for me and I would do it more. That is originally what I set out to do with this thing, but then the whole daniel thing started and it just turned into a blog about that. that is not a bad thing, and I am not saying that a lot of my posts won't still be about that. But if you only have posts occassionally they are all going to be about the big things, and that is usually the 'big thing' going on in our lives.

Since I don't have enough posts for a list of highlights, I'll just give one of my favorites. It is one of the first things i ever wrote about and I still chuckle when I think about the incident today.

I have lots of things to write about if you care to know what's going on. I have been super busy and preoccupied with Daniel's public school stuff. We had the big meeting to set up the goals (or rather a continuation of the meeting we started in December) and I could write a book about it. But I don't know if that is a wise thing to do right now, so I have to wait at least a little while until we get things set up for sure. The other big things are Christmas was great, the Holiday break was great, we went to see our new, one of the best in the country neurologist. He is going to test Daniel for mitochondrial disease which I am still learning about but it is fascinating. I think it could change the way autism is thought of in the future and I am really curious if Daniel is one of the 30% or more of children with autism that have it (according to recent research). He is also having a 23 hour EEG (yes, you read that right) in a couple of weeks. It is 23 hrs instead of 24 because 24 requires an official hospital admission which affects insurance paying for it, blah, blah, blah. They are hoping to catch the seizure activity and get some idea of how often he is having them.

As far as communication and all the other things, Daniel is doing pretty good. I am more and more scared for his safety as he gets bigger and faster and frequently runs for the street or most dangerous situation available. Yesterday, I was at a friend's house and he was upset about something and ran out her front door. I was in heels (I had just finished the big school meeting) and she was breastfeeding, so we both weren't as fast as we would normally be. But he was at the street before I caught him. Most people buy all of the child proof locks and safety stuff when their first child starts crawling or walking....we're buying ours when our second child is 3. (We should have bought them before, we are just lazy).

For some good news, though, the other day he came up to me and said 'eat, eat'. I had just given him some yogurt so I said (never in a million years expecting him to respond), "What happened to your yogurt?" and he replied "yogurt bye-bye". this may not seem like a big deal, but it was huge, I tell you, HUGE. Not only did he UNDERSTAND what I was saying, but he also ANSWERED a question (and for you early childhood people out there, it was a 'wh' question at that). I didn't believe my ears until I went and looked and sure enough his yogurt was bye-bye. He had eaten every bite. I have thought this before, but I felt like that incident (falong with a couple of other like it that have happened recently) proves that he is so more with it than I thought. He totally knows what is going on...which is great news. But also sad in a way too. It is sad to me to think that he knows what we are saying and is almost as smart as an average kid his age, but is 'trapped' and can't really communicate. Sometimes it is easier to think he is just out of it. But then again, to see him respond to me and actually have an almost 'conversation' is one of the best moments I've had as his mom.

So, here's to my first post of words poured out, chaff and grain together. Sift away, friends.