I have decided that for the month of February I will be partcipating in Nablopomo, National Blog Posting Month. It started out as only November was for Nablopomo but now, well, now any month can be a Nablopomo Month. =) Now I don't how long or insightful all of these posts will be but I'm definitely going to see if I can't post once a day for the whole month. (lol)
Things are looking a little crazy at the moment. The blog is in a bit of upheaval. Please excuse it all. It occured to me the other day as I was organizing my files that my photos of Rob and the boys were outdated. Well Elliott Richard's and Emmett John's were from Christmas time but honestly they were just placeholders until I could find some that I truely liked. You're all probably wondering who the heck "Henry James" is...I need to post about him. It's coming. With a few other posts I'm working on. For now, just know that things that appear off kilter but I'm working it. =)
I took Mr. Emmett John to his Audiologist appointment on the 20th, whatever day that was. I can't remember anymore. You'd think I would remember that day. I feel like I should. I feel as if it should be etched into my brain forever:
Wednesday, January 20th, 2010 @ 3:00pm: Emmett John's world officially closed off forever.
Emmett doesn't like to have his ears messed with. Even to have them checked by Dr. H for a run of the mill ear infection I have to hold his hands down with one hand while I hold his head against my chest with the other hand. He hates it. So when she tried to put the little things in his ears to see if his eardrums even moved, forget it. The different and smaller little things to actually test whether or not he can hear sounds, not a snowballs chance. In stead she tried a rather crude method.
Emmett John sat on my lap with a little round tub of rubber beads to play with. The Audiologist Assistant (?) sat across from us to watch Emmett's face for startle reflexes and various reactions. The Audiologist left the walk-in-freezer...er sound-proof room and went on the other side of the little window. Then she began calling out to Emmett John through the speakers. She started at a whisper and increased her volume until she finished up screaming. He didn't flinch. He didn't move, startle. Nothing.
It took literally everything I had in me - everything good and bad and indifferent - to not react and accidentally tip him off.
Then when he wasn't responding at all. It took all those things not to tip him off and not to fall apart.
I was beyond devstated. My baby couldn't hear her. She moved on to the beeps because A) she has to and B) sometimes it seems as if he can hear loud, high-pitched cell phone ringtones. She began at a whisper and slowly increased the volume with the lower tones. Nothing doing. Then she switched to the high pitched tones. Again with the whisper slowly increasing the volume. Nothing doing. At one point she turned these monkey noise making toys on that sat in boxes above the speakers. He reacted to those and we all went wild. Then she said she wasn't comfortable marking that he reacted to the noise because he could have seen the lights out of the corners of his eyes.
My heart broke again.
In the end, she said that if Dr. H had not already been recommending the ABR she would insist upon it. His OAE had not shown any clear results expect that she felt comfortable saying that he is at least suffering from moderate hearing loss. She said that he cannot hear at 45 decibles, which is human voice. She then went on to explain that there is a very slim chance that he can hear at 65 decibles and above, which is a screaming human voice. However, she is absolutely comfortable saying that "he cannot hear at 45 decibles and suffers from at least moderate hearing loss".
I've been working on teaching myself basic American Sign Language with a website so that I can try and communicate with him in some way. He has to have something. I can't imagine what it must be like to not be able to hear anyone. Not be able to convey your needs to anyone. It's no wonder he's been walking about pinching and hitting and all out screaming for ages now. Rob and I spoke to Dr. H on Wednesday at Gavin's 10 year check-up and we also feel certain that nearly all the appointments where I drug Emmett John in to the office saying "He's fussy, won't sleep, just screams and pulls at his ears." he was pulling at his ears because he was likely losing his hearing and we didn't know it. If only I had followed my mother's instincts all those months ago! I wonder what may have turned out differently.
Anyhow I can't do anything about it now. What I can do, what I am doing is learning ASL so that I can communicate with Emmett John, at least until he picks it up as well. I'm not very good and I don't know very many signs. Emmett John seems tickled pink that he can understand though. He signed his first word the other night, Daddy, which was HUGE! I'm teaching Rob what I learn as I go along. I try and teach Gavin and Elliott Richard, too. Gavin wants to learn as much as I have to teach him. Elliott Richard flat out refuses to learn. He just keeps yelling at Emmett John in stead.
It seems that every time we start to find some semblance of normal around here...I don't know why we try.
We can't get in for his ABR test until March. Dr. H tried to convey to the lady that he would like Emmett John's case expedited. She got snippy and told him that the 25 children ahead of Emmett John would like their cases expedited as well but it doesn't work that way. Emmett John will just have to wait. Dr. H then asked that Emmett John be put on a cancelation list and she tried to make it sound all horrible - like I would decline because of short notice or something. Clearly she doesn't know me - well, obviously but you get my point. So now I have to wait for her to get off her high horse and call me with an appointment because she wouldn't make it with Dr. H's office because "that's not how I do things!" ARGH! Like things aren't complicated enough? I need a chick on a power trip?!
This whole situation is just making me sick. My fibro meds aren't nearly as effective any more. I'm having migraines all the time. It's just crazy. And because I'm the ASL one in the house right now, Emmett John is my shaddow. Never mind Henry, my new dog, whom you know nothing about, thinks that being supportive translates to being under foot where ever I go. Elliott Richard wakes up at 3am lately. Heck, even Emmett John has been waking up at 3am for some God awful reason! I don't know why he does it because unlike Elliott Richard, he's clearly not bright-eyed and bushy-tailed and ready to go. He's just a great big fuss pot looking to make my life a living Hell - totally uncool.
My Mom is actually worried that I'm going to snap under all of the stress I'm under right now. I'm not sure if I should feel flattered that she cares so much. Shocked because she's managed to see through my facade so quickly when I've known other far longer and they're still in the dark. Or offened because she seems to think me so fragile. (lol)
Oh well, that's all we know on the Emmett John front. I didn't intend for it to be so long. Sorry about that. Oh, and by the way, if I ever refer to him as MJ it's just a carry over from signing. We've found that MJ is easier for everyone to sign (especially quickly for some of us) than EJ. So just make a mental note: MJ = Emmett John. =)
Yesterday I took Mr. Emmett John for his 18 month well-baby check-up with Dr. H. Tomorrow I will take him to the Audiologist to have his hearing tested. Physically, he's doing well. He isn't sick. Motor skills are right on track. He's still channeling Jack-Jack, which is absolutely exhausting. I honestly don't know how he does it. One minute he's right next to you then he's gone and there are 6 of him everywhere! On the bright side, his constant movement doesn't seem to be having any effect on his growth...
The Stats
Head Circ: 48.8cm (75%)
Length: 35.25in (98%)
Weight: 26lb 1oz (41%)
I spoke with Dr. H about my growing concerns about Emmett John's lack of language. He doesn't talk, period. He babbles, which basically means he makes the noises that don't pertain to anything. For Emmett John, MaMa doesn't hold any signifigance for him towards me. Neither does DaDa, BaBa or any of the rest of them. He just says them.
He doesn't seem to hear us either. Our house is set up in a circle - front room (living room), hallway, kitchen, dinning room - all in a circle. The other night Emmett John was sitting on the couch in the front room and I snuck around so I was about 2 feet behind him then I clapped. I clapped so hard my hands instantly turned red and I moved Emmett John's hair. He didn't even move. He didn't startle, flinch or anything else. We call out to him from across the room and he doesn't respond. Loud noises, quiet noises...it doesn't matter because he doesn't seem to hear any of them. The only ones that he sometimes seems to hear are high pitched cell phones.
I mentioned his complete lack of a startle reflex to Dr. H when Emmett John was about 5 months old. At the time though, he had so many other things going on that we needed to figure out that it was lost in the shuffle. Plus his hearing test at the hospital when he was born so Dr. H felt that the "wait and see" approach was probably best. I allowed myself to be poo-pooed into silence and ignored my mother's instinct. Here we are 13 months later.
Tomorrow we are going to the Audiologist for his first hearing test, the OAE. It's the regular hearing test to see if he can hear at all. After that Dr. H has referred him to the local children's hospital for the sedation hearing test, the ABR. He is also referring us to Help Me Grow for early intervention. Help Me Grow will help us to get started with Speech Therapy, Sign Language classes so that we can communicate until we find out what is going on and even there after. He's also referring us to Gavin's Developmental Neurologist so that he can be evaluated for Autism.
Dr. H said that Autism is on the bottom of his possibilities list; however, with the family history via Gavin and the significant speech delay he wants to be sure that all of the bases are covered. That way if he does happen to be Autistic we have early intervention in place, whereas Gavin was unable to benefit from those services. I agree with Dr. H, I don't think that he's Autistic. I think he's deaf. However, I will feel better knowing. Especially if the hearing tests come out a-okay.
I'm not going to lie here guys, I'm terrified for my baby.
Gavin has been a complete and total champ today. I wish I knew more about hearts. How they work. What a heart echo is *supposed* to look like. What a 12 lead EKG is *supposed* to look like. I wish I knew more about Marfan Syndrome. Does he really need another "Syndrome" on top of everything else?!?! How is that even fair?!?! I did some reading about Marfan Syndrome the other night. I stopped after reading that until recently the average life expectancy for a patient with Marfan's Syndrome was 32 years old. I wanted to run away when we told the nurse about the *Deme's genetic aortic dissections and the first thing she said was, "Ah, undiagnosed Marfan's Syndrome." *And she wrote it in his chart!!!* I don't want it in his chart! I don't want him to have another syndrome! So far today he's had an EKG and an Echocardiogram. I couldn't tell anything about about either test while they happened so everything looked bad and very horrible to me. So I stopped watching. Elizabeth Gorski
We are on our way to the pediatric cardiologist with Gavin. We've recently learned that his biological paternal grandfather and his biological paternal aunt both passed away of dissecting aortic anueisms (sorry about the spelling and lack of links I'm on the road), which is genetic. Gavin's heart is already special because its flipped and I forget what's that called at the moment. So now we're on our way to pediatric cardiologist - who got us in today during a phone call Monday morning if that gives you any indication how serious this potentially could be.
Please pray.
PS The title is how Gavin describes his heart pain. I thought it was given the seriousness of the situation. I wanted to remember it. Elizabeth Gorski
I'm done being sick.
I'm done being the downfall of our household.
I'm done being the reason nothing gets done.
I'm done being the reason everything falls apart.
I'm done being treated disrespectfully.
I'm done listening to how my illness(s) are the reason nothing gets done.
I'm done getting yelled at for over-doing it.
I'm done getting yelled at for not helping.
I'm done being treated like a second class citizen in my own home.
I'm done.
I have always been a journal-er. I've had a diary since I was 8 years old. I'm not one to necessarily write every single day. There have been times when I have gone for weeks and even months without writing. The more my children seem to mulitply and the older they get, the more this holds true. I've said it before and I'll likely say it again, I prefer my pen and paper journals to the blog. I love the fact that the blog reaches people. Whereas my journals simply sit unread. At the same time I love that my journals sit unread. I love that they are written in my handwriting, which will help serve as a window into my thoughts should my boys ever decide to read them. I also love that no one reads my pen and paper journals. I can write whatever is going on and not have to worry about grammar or spelling or hurting feelings or being misunderstood. It's my space. Plain and simple. So my question is this: How much is too much?
There are some things going on at the moment. Some of you are aware of them. Most of you are not. (Thank you to those of you who have been a huge help during all of it.) If I am being honest with myself, part of me wants to blog about these things. Part of me does not.
Can you tell the difference between these two boys? =)
Here...allow me to help you.
The gorgeous little boy (Good observation there Jessica!) in the top two pictures is a happy diaper-wearing 3 year old.
The gorgeous little boy in the bottom two pictures (Despite the horrible quality of the pics.) is a happy potty trained, underpants wearing "Little Boy" 3 year old.
(The "Little Boy" is very important because it was apparently our tripping point on potty training.)
Well, Christmas has officially come and gone. There are now...what, 364 days to Christmas 2010. Or something like that. Thank God! No offense to Jesus or Mary or anything but I'm telling you what...every year the Holidays get more difficult to survive.
I had everything planned out this year. I was going to start preparing just after Halloween so that I wasn't running around like a chicken with my head cut off come Christmas Eve. It didn't work. I didn't get any of the gifts made that I wanted to. I didn't get the kids all figured out etc so I could help them create their gifts for everyone. My Mom was the only one who's gift was completely finished in time to give to her. And I was running around up until 30 seconds before she came in the door to get that wrapped etc.
But it's not just the prep work. Or the decorating, which I can't even manage to find a way to get done anymore. It's all of it. It all seems so complicated. Now don't get me wrong here, I'm not a Scrooge by any means. I just noticed this is all.
Take toys for example. You have the gifts that Gavin and Elliott Richard received, which were taped in and twist-tied in. Am I the only one who thinks this is complete and total overkill? But I digress...their gifts are protected with the strength that I thought only Fort Knox could offer. Then you have Mr. Emmett John's gifts. Most of his gifts were what I affectionately call "Old School" toys. He received the pull behind telephone, the shape block sorter and the little "bed bug bopper". None of those were taped or twist-tied. You opened the box and pulled them out. End of story.
Heck even if you compare video games! When I was a kid, the Nintendo was the "in thing". Everyone either had one, knew someone who did and/or wanted one so badly they could almost taste it. True, by today's standards the graphics are horrid. However, the controls were easy and straight forward. Up was up. Down was down. You get the idea. Nothing was overly complicated. Now there are 3 different major systems with beautiful graphics in their own right. Each specializes in a different type of game genre. And each seems to have their own unique way of making the controls complicated.
Sorry to be all doom and gloom, I'm just over-whelmed from all the running and buying and wrapping and the going and visiting and whatnot. I still think it holds true though - things have gotten far to complicated over the years. At times, I really do feel that it's almost complicated simply for the sake of being complicated. But that's just me. =)
Aside from taped and twist-tied to death new toys (more pictures to come tomorrow), the Cheerios are doing well. We are exhausted and well-fed. We had a blast with family. And now we are all attempting to recover. Except the boys seem perfectly content to stay hyper and completely bouncing-off-the-walls. (lol) Our Christmas was beautiful and everything a Christmas should be. And we hope that you and yours had a very Merry Christmas!
After Gavin and Elliott Richard work us up for presents, we got ready and went to Grandma and PaPa's for Christmas Breakfast. Here's some of the family hanging out, drinking coffee and chilling while breakfast is finished up. (FYI we ate 45 eggs!!!!! OMG)
And of course, what is any picture montage without group picture of my Baby Boys - Daddy (not a Baby Boy), Elliott Richard and Emmett John. Emmett John had lost his patience for waiting for the 45 eggs by this point. (lol)
Presents!
After we after a huge breakfast prepared by PaPa and Aunt Kate, which was absolutely delicious! Then the guys did the dishes so Grandma wouldn't because she had to be at work at Noon. Once we were fed and cleaned up, it was time for presents!!!! =) lol
I took this picture of the bow on Jenna's gift because it was just the most adorable bow I have ever seen! Grandma made it herself too. And she says I'm creative. Pfth.
Family...ah who am I kidding...MORE PRESENTS! =)
Here's Mr. Gavin opening one of his gifts. He's always so serious. =) But even with very little sleep and so much going, he did really well.
Family Time
Elliott Richard loves this Pokemon game that Grandma and PaPa got him. There are little marbles and Pokemon cards. You shoot the marbles and they hit these triggers which causes the cards to *pop* up. Anyway, he adores it and Grandma was brave enough to play a few rounds the "Elliott way". Gavin was just kind of chilling and watching.
Relaxing
Here's Aunt Jenn kicking back and reading her gift, The Postcard Secret book. (Or whatever it's called...I'm too tired to go looking for it.)
Passing Out
After breakfast we all went our own ways for a bit, then we met back up at Aunt Carol & Uncle Rick's house for lunch/dinner (so what is that called? Linner?). It was huge and delicious - turkey, cheesey potatoes, brocolli cheddar rice casserole, salad, stuffing, ham and a whole bunch more. It was so, so, SO good! Some of us wished we could pass out afterwards with full bellies surrounded by family. Then there were a few of us, *cough* Kate *cough*, who did. (lol)
Just a quick Christmas 2009 at Home recap in photos...okay, sadly these are the only photos I took with my cell phone. The rest are on my camera and I haven't had the chance to pull them over yet. Thoes will come tomorrow. =)
Elliott Richard and Emmett John just after we decorated the tree.
(If you look carefully you can see that we only used candy canes to decorate this year. That way if they fell off and broke there wasn't any harm done; we could just eat the carnage. =) Also if you look again, you'll notice that the candy canes only cover the top half because I was trying (in vain) to keep Emmett John from stealing candy canes.)
Our sad little yellow "golden star" on top of our tree.
Elliott Richard kept asking so sweetly for a "golden star" to put on the top of our tree. Unfortunately, the ecomony being in the lovely state that it is we just couldn't get one this year. So I made one...sort of. I made this one, which isn't gold and it fell apart the day after I took this picture because the glue gave way. No matter. For a day or so, I was able to give Elliott Richard the star he wanted. =)
Okay, at least as far as the Boys are concerned. I might have a few things for others left to pick up. But the main things are done. Now the gifts that need created by the Boys, yeah, let's not go there shall we? (lol)
I can't believe Emmett John is 17 months old now. Time is going by way too fast for me. Geez, in 11 days he'll be 18 months old. I can't believe everything that has changed with him. Everything he's been up to.
His nickname has taken some interesting and unexpected turns. What used to be small and cutsie and bug based, is no more. (lol) Although I'm not sure why I'm so surprised. If you remember I went through the evolution of my Boys nicknames a while ago and it's crazy what happens. Mr. Emmett John now goes by either Jack-Jack or Indy, which is short for Indiana Jones because he tends to get into/find dangerous and troublesome situations. Jack-Jack is from the Disney/Pixsar movie "The Incredibles". And just for the record, dangerous and troublesome are entirely accurate descriptions.
(Okay, so while I absolutely adore my layout but it isn't exactly the widest layout ever in existance. If you really need to have the "volume control". Or the option for "full screen". Or the entire *waves hands frantically in the air*RIGHT SIDE OF THE CLIP! Then fine! Just double clip the movie or click RIGHT HERE to watch it on YouTube. If you really want to be that way.)
Anyway, moving right along. (lol)
Since I've brought up his dangerous and troublesome activities, I feel I should let you in on his new "Kid Tricks". Which aren't nearly as dangerous as the actual Jack-Jack, by the way. Let's see...what our Jack-Jack's been up to lately? He runs and sometimes I swear there are more than one of him (hense the "Jack-Jack" nickname) because one second he's climbing the back of the couch - like the flat back, not the cushion to back. But then as soon as he's there, he's on the stairs and then *BOOM* as up the stairs and down again. Then *BOOM* he's pushing Elliott Richard on a push toy. It all seems to happen within seconds and I swear there are more than one of him and they all move at super-human speeds!
He loves to play "tag". He'll play with just about anyone. With Maggie Sue. With Elliott Richard. With Rob or I. The catch is that most of the time we aren't playing. In fact, Maggie usually doesn;t even realize that she's playing tag. (lol) Basically, he chases her from the living room to the dinning room. Once there he "sqees" and runs away! Maggie hears him "sqee" and assumes something must be wrong, so she follows in hot persuit. And so goes the game of "tag" according to Emmett John.
The other "kid trick" he does that I just love, is when he point to you and runs. Every once in a while he will stand up and look around trying to decide who he wants to be held by. Once he decides, he'll point both index fingers at them "horns of a bull" style and run as fast as he can at that person with a huge grin on his face. I just love it. (lol)
I know I'm a horrible slacker mother right now. I'm not keeping up with what the kids are doing. For the most part, Emmett John is right on track. For the most part. There is just that one little thing. That one nagging little bit. Well, okay maybe it's a big bit. I can't decide.
He doesn't talk.
My gut. My mother's intuition. My inner-me. The inner-mommy. They all say that this is a Big, Huge, Waving, Warning, Look-at-Me Red Flag. Then I have well-meaning family members who tell me that Uncle Rick didn't say his first word until he was 2 and 1/2 years old. Uncle Rick is a wonderful, very intelligent man. He's one of my favorite uncles. Heck, he's Elliott Richard's Godfather so clearly he isn't a slouch in my book. And no disrespect to Grandma Gene but Uncle Rick isn't my Emmett John. I wasn't her. I don't know what her inner-mommy was telling her. I only know what my inner-mommy is telling me.
Problem is that even Dr. H is on the "everything will eventually be okay" train. First, he said "if he doesn't talk by 15 months then we'll worry". But Emmett John technically talked by 15 months. He said 2 different words. He said "cookie" maybe 5 times and "cracker" 1 time. He's never said those words again. He understands when we talk to him. He doesn't talk back. You can see he's clearly frustrated. Our faces bear the marks of his frustration. He's a pincher. Yesterday, he and Elliott Richard were standing at the baby gated enterance to the kitchen talking to me while I made snack. Well, Elliott Richard was talking. Emmett John wanted to talk. You could literally see it in his face but he couldn't get it out. Finally, he became so frustrated with the whole situation that he screamed and reached out and pinched Elliott Richard's face all in one swift move. It breaks my heart!
Now don't get me wrong he communicates some. He babbles. He makes what I call "pitch noises", which is where he does like the Tim Allen in "Home Improvement" guy "Arrrooo" thing at different pitches. So it isn't that he's mute because he isn't. He just doesn't speak in words or sentences. We've also heard that it could be because he's the youngest, perhaps we are speaking for him so he doesn't need to speak. We don't and he does. At times Elliott Richard will say, "Emmett John says..." and finish the sentence with some silly little 3 year old hilarity but very rarely to we actually speak for him.
In an attempt to communicate with him, some how I've been trying to teach him Baby American Sign Language. I only know a few words right now. But it's a start. I'm hoping that it will help Emmett John once he learns the signs for himself and he is finally able to tell us what he needs or wants. He "said/signed" his first word yesterday though, which was a pretty big deal around here. He signed "Daddy" to Rob. Then I asked him if he wanted to "sleep with Daddy" or "movie with Mommy" and he went with me. He went to the living room. Now when we sign to him, we say verbally what we are signing so he puts 2 and 2 together. In my experience, and it may just be wishful thinking, he seems to understand the conversations better this way. Only time will tell, I suppose.
I just hope he is able to finally find a way to communicate so he isn't frustrated any longer. It is one of the saddest things in the world to see your baby struggle that way. Knowing he has something to say. Seeing that he is trying so hard to say that and getting so stuck that he ends up striking out in anger when he can't. Something has to change for him very soon before this mama gets angry and starts to lay the smack down.
Wow. I'm not sure if I should feel flattered or irritated. Given my present state of mind, I feel irritated. Although deep down, I really feel flattered. (So take that you comment bots!) Anywho, I've had a few comments lately to this effect:
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And since I just received another one I'm going to have to do something. I just need to decide what that something is.
Any advice? (From someone other than the spammers.)
Its been a while since I've posted (sorry about that) but I felt like posting an "I Don't - Wednesday" today...and away we go!
I Don't Wednesday #6: KetZchup
I Don't ... Know why I haven't posted in so long.
I've started ketZchup posts but they are all so long and unfinished and the longer it takes me to finish them - the more behind I become. I hate being behind like this. So they are still waiting to be finished.
I Don't ... Know why I don't just start from the here and now.
You know...Say, screw the postS waiting to be finished and move on. To Hell with those damn wanna-be posts!
I Don't ... Know why I just wrote that "I Don't" because I do know.
I Don't ... move on because for starters, I'm suffering from some serious OCD. Secondly, someday I will publish this blog. Someday it will be added to the other journals I have that chronicle my life. And to cut those things out would be to remove large sections of my life.
As it is, I'm already not blogging HUGE, GINORMOUS parts of my life over the past 3 to 6 months because it has been made quite clear to me that if I chronicle those happenings:
A) I would be using MY BLOG against others. You know, because that's why I started it. Revenge. Spite. Viva la Revolution! And all that jazz. *insert eye roll here* B) I would be hiding behind MY BLOG even though the thoughts, feelings, expressions, etc that are/have been/would be covered (if I were to cover said taboo topics) have already been shared privately (via emails and a very few phone calls) with the parties involved. So I'm not hiding behind anything. But whatever. C) I would be discussing other people's lives and that isn't right. Nor is it fair.
Now I have not had a single complaint about my blog from people - except for a few loons who felt that I was being unkind to my dead-beat-dad exhusband once upon a time. So I stand corrected - by myself - that I have had a few complaints over that past 2 years or so. That being said, in case it has escaped anyone, I tend to discuss other people's lives on a pretty regular basis - when I can find time to blog that is. I discuss my own and those of my family (ie Rob, husband; Gavin, 9 year old son; Elliott Richard, 3 year old son; Emmett John, 17 month old son; Maggie Sue, nanny-dog; Cleo, cat). I discuss my sister, Trisha, my Mom, Mary. (See Mom, I'm posting again. lol) I discuss quite a few people. Yet no one else is screaming unfair. But don't worry ... I think I have come up with a way to discuss what I want without further pissing anyone else off. Hhhhhhmmmm........I'll have to think about that some more.
Anyway, I digress.
I Don't ... Believe how quickly the month of December is flying by!
I had it all planned out so that the boys could do our usual traditions - make ornaments, make Christmas gifts for Grandma & PaPa and now for Grandma Mary (who they are beyong super excited to include to the traditions this year!) etc. Plus there are Godparents to consider. Then while I get the gifts together for the 3 boys. I'm also putting together a group gift for the boys. Plus a few surprises. I've had it all figured out, planned out and ready to go on paper since mid-October.
I was so sure I had it all figured out. Then I forgot to take my Lyrica for 1 flipping day! Which has thrown me off by like 3 days! So I'm back to not being able to drive again; so unhelpful right now!
I Don't ... Know how to care for Gavin effectively all the time.
Sometimes its a breeze. Sometimes I see the damage others have done to him before the legal system finally got a clue. Before I finally got a clue. Sometimes that damage is more than I can deal with and I know that they knew what they were doing - whether they deny it now or not. Sometimes I wish for the chance to interrogate them about it, with the chance to only get honest answers and then smack them all silly in the end. Sometimes I wish for a winning Lotto ticket, too. None of those things is going to happen.
I Don't ... Know how to raise Gavin his way.
Elliott Richard his way. Emmett John his way. Without making any of them feel singled out. Without damaging any of them.
I Don't ... Know how to survive anymore.
Surviving is usually the only thing I know to do. It comes naturally. After a lifetime of various rings of my own personal hell. Surviving is as natural to me as breathing. Lately, I can't seem to remember how.
I have been trying to figure out how to reach out and find you. I know you are going through something very profound. I can't and won't pretend to understand how you feel and where you are. I know you feel so many different emotions and I can see all the pain and fear in your eyes even though you try to hide it from the rest of the world. I wish there was something I could do to help carry this burdon. I feel absolutely helpless. I know how hard it is for you to trust anyone anymore and rightfully so. You have lost a great deal or rather a great deal has been taken from you. Over the years you have learned not to trust anyone. You have been forced to put a wall in order to survive.
I have found over the years that I am paying a price for what others have done. I was hurt because I thought that after 10 years and everything we have been through I shouldn't have to prove myself.. I'm sorry it took me so long to understand...But I get it now...
Lizze, I only saw the doors you still had closed and I missed all the ones you have opened for me. I'm so sorry I didn't see it sooner but I see it now...
I am writing this because if I try to say this it will never come out right. Sometimes speaking isn't enough. You know I prefer to talk but I think this is a better way for now.
I love you so much. I want to thank you for opening all the doors you have. I understand how hard that is to do. You once told me you have let me in farther then anyone else. At the time I didn't think it was enough.. I want you to know that I didn't understand then. I'm truly honored to be where I am even if there are still some closed doors.
I need you to understand that I am here and I believe in you. I know sometimes you are feeling your way through the dark but you aren't alone. I will be here even I just sit outside the door patiently waiting until your ready open it for me.. I think I will quit while I'm ahead.
I have been listening to this song for a while now and I think it says most of what I have been trying to say....I think it fits us pretty well... Especially the refrain....It's 4am now so I am hoping this will make sense....
I love you,
Rob
I'll sing it one last time for you Then we really have to go You've been the only thing that's right In all I've done
And I can barely look at you But every single time I do I know we'll make it anywhere Away from here
Light up, light up As if you have a choice Even if you cannot hear my voice I'll be right beside you dear
Louder louder And we'll run for our lives I can hardly speak I understand Why you can't raise your voice to say
To think I might not see those eyes Makes it so hard not to cry And as we say our long goodbye I nearly do
Light up, light up As if you have a choice Even if you cannot hear my voice I'll be right beside you dear
Louder louder And we'll run for our lives I can hardly speak I understand Why you can't raise your voice to say
Slower slower We don't have time for that All I want is to find an easier way To get out of our little heads
Have heart my dear We're bound to be afraid Even if it's just for a few days Making up for all this mess
Light up, light up As if you have a choice Even if you cannot hear my voice I'll be right beside you dear
Seriously, I've always had some strange "talent" for attracting crazy and insanity. Usually more crazy than insanity. Mostly stalkers. Some abusive exs. This time I've managed to get both insanity AND stalker. Clearly I haven't lost my touch. Yay, me. (That was sarcasm, btw. In case you're new to the blog.) Oh, and the best part? He's my cousin who I haven't seen or heard from in about 5years. Yeah...nice,huh?
Lizze
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I am the co-sleeping, attachment parenting, no-spanking mama. Outside of my family, I live for art and writing. I keep journals, baby books, date books...anything to help me help my boys know who we are, where we came from and all that we've survived. My children are my life. I struggle everyday with my relationship with God and trying to end my crisis of faith. I have Fibromyalgia, which is a chronic pain disorder and effects every aspect of my life. I love to write and the act of writing, which I believe is a dying art. I am a cat person. I love my Cleo and I don't care for dogs. That being said, I love my Maggie Sue and Henry James. I love my friends and family, everything I do is for them. I think, more than I should. I talk, more than most. I'm creative, in almost everything I do.
Today I am feeling...
Rob, my darling husband is everything I could ever want in a spouse. He's my best friend, a wonderful father to our boys, and a dedicated provider. He would give you the shirt off his back if he thought it would help. The again, he could also sell ice to eskimos if the mood struck him. He runs our construction company and our computer repair business. Then he spends what precious free-time he has learning all he can about electronics and computers. He enjoys creating operating systems for smart phones and sharing them with other smart phone users. He also loves the outdoors, playing video games, playing with the boys, creating slide shows from pictures and videos with music, and hanging out with family. He is one of the most caring and compassionate people I've ever had the joy to know and I love him more than words could ever express. He has sacrificed so very much for our family and we all love him so much. For once, I don't have the words to express it adequately.
Gavin's Stats
Height: 4ft 8.5in
Weight: 76.5lb
Gavin is my oldest. He's seen more in 10 years than most have seen in a lifetime, only he doesn't have the tools to process any of it. He has Asperger's/high-functioning Autism, OCD, ADHD, Bi-Polar Disorder, PICA, Sensory Integration Disorder and Conduct Disorder. Not to mention that he's prone to psychological breakdowns. He's quick and clever, highly intelligent and incredibly manipulative. He's a blue belt in Karate, loves art class and writing stories, and excells in math and science. He loves his blankets and tries to sleep with more stuffed animals than he has room for in bed. He loves Legos and it's nothing short of amazing the things I've seen him do with them. Gavin's entire world is in his head. Some days he is so lost in his own universe, that we are lucky to get through to him and connect at all. Whereas some days, he seems fine. He interacts with us and seems like every other American boy. Other days we can't seem to do anything right and everything sets him off because he's so sensitive from not being used to "living on the outside". To that end, everyday with Gavin is a challenge and a constant balancing act on the head of a pin. Not a moment goes by that I don't pray for the patience and guidance to help Gavin navigate a society that he is unable to understand. A society that is, for the most part, unwilling or unable to understand him.
Elliott Richard's Stats
Height: 36.9in (34%)
Weight: 31lb 12oz (50%)
Elliott Richard is our first preemie miracle. Born at 36 weeks gestation, he was practically perfect in everyway except for those pesky lungs. He was born with Premature Lung Disease, which partnered with other complications caused him to spend his first 10 days in the NICU. He's now a happy, healthy 3 year old "terrorist" who refuses to potty train. He's sweet, compassionate, afffectionate and silly. His clear blue eyes and curly hair help him to get away with far more trouble than he should. He loves Lightning McQueen, Hot Wheels cars and asking questions. He's always willing to be a "super helper", unless of course he isn't. He is an amazing big brother and does his best to take good care of both his brothers. Although he's often confused and believes that he is the oldest of the three. He loves pizza, hates jo-jo potatoes, loves tubbies, hates bed time and will ask one question after another after another to try and stay awake. He loves to talk, just like his mother. He is a perfectionist when it comes to certain things and incredibly laid back when it comes to other things - like the state of his room.
Emmett John's Stats
Head Circ: 48.8cm (75%)
Length: 35.25in (98%)
Weight: 26lb 1oz (41%)
Mr. Emmett John is the baby of the family. He's my other preemie miracle, born at 36 weeks after many months of preterm labor. He managed to avoid the NICU only to return to the Peds Unit at 2 months with sleep apnea and then again at 11 months with dehydration. Now he's a year old and one by one slowly over-coming his health issues. He loves to eat! He's got a mischievous grin that he uses for trouble-making and
general exploring mayhem. Then he has a beautiful grin that takes up his whole face and crinkles his eyes. He has a very curious personality and a selective sense of humor, which have already started to get him into quite a bit of trouble. There's no baby-gate that can hold him. No barracade that can keep him in (or out for that matter). When he sets his mind to something, look out world! He doesn't talk yet but you can tell he's taking everything in, which scares me a little. He's working on walking and would probably be taking off already, if Elliott Richard weren't so over-protective. His favorite toys are Daddy and Maggie Sue. He's picky about his sippy cups. Loves Blues Clues and being sung to - no matter what the tune. What can I say, it's tough being the baby.
Maggie Sue is my beautiful, energetic American Bulldog/Boxer mix. She looks so fierce that her name is a little play on words. We named her Maggie after the children's cartoon "Maggie & the Ferocious Beast". She loves peanut butter, snuggling, playing tug-of-war, doing tricks, her family and especially "her" babies. She loves the boys as if they were her own puppies. She cares for them and is so very careful with them. It's amazing. When they cry, she's right there checking them out. If there is noise outside, she checks it out. No one is harming "her" babies on her watch! She weighs 60lb but seems to believe she's a lap dog. When she decides it's time to snuggle, it's time to snuggle, by force (very gentle force but force nonetheless), if neccessary. As my Fibromyalgia has gotten worse she's become my comfort. Every night she climbs up on the couch next to me and lays half on my lap, very gently. It's almost as if she's trying to absorb my pain and stress; God bless her. She's never turned down a ride in the car - even to go to the vet. At night she isn't content unless she is sleeping on the foot of our bed...under the covers and most of the time entangled in our legs.
