A little piece of heaven

I’ve been watching Raising Hope on HULU and I think it’s my new favorite show.  It is HILARIOUS!  I find myself in stitches almost every episode.  It’s sure helped to improve my mood 🙂

And talking about mood…thanks to everyone who commented or emailed me kind words of support.  They meant, and helped me, a lot!  I have been really struggling with exhaustion and feeling guilty – it’s good to get some perspective.

And talking about perspective…I realize that the way I posted was pretty unfair to Owen!  He HAS been super helpful and has stepped it up.  He takes the kids every evening so I can rest.  He gets Nathan ready to school in the morning and puts him on the bus.  On the weekends, if I tell him I am not well, he does his best to take care of the kids.  I didn’t mean to make it sound like he’s not helping.  I think that he’s just struggling, like me, to understand the change in my energy levels.  He only asks for the bare minimum and when he sees that I can’t even do that, well, I think that’s when it’s upsetting to him.  And I understand, because it’s as strange and upsetting to me, too!

Owen went paintballing this weekend, and decided to take Nathan into the fields for a couple of turns.  He was SO HAPPY!  He loved running around and shooting the gun with his daddy!  Of course he was the ONLY one in the field 🙂 so he didn’t get shot at, but to him it was perfect, he was just ecstatic.   Sunday we celebrated my mom’s birthday and the kids had such a good time!  Isabelle is walking everywhere now – she’s getting into everything!

Anyways…I have to confess that this whole exhaustion thing is really tough for me, scraping by the days is just not something I’m used to, and I really miss my old energy…I hardly recognize myself and feel like I’ve lost a big aspect of who I’ve always been.  Hopefully things will get better soon.

Oh, and today, I am 13 weeks…so maybe some of the nausea will go away soon?

I feel like I’ve hit a wall.

For years my life has been go go go.  I’ve always had at least 100 plates up in the air and I’ve loved it.  I’ve loved juggling projects.  I’ve loved creating several businesses from scratch, and watching them grow and flourish.  I’ve loved being on the move – traveling all over the world, never staying still, always exposed to new experiences.  I’ve loved discovering the world of special needs, and “figuring it out” – from being completely ignorant to feeling like I can now navigate it with my eyes closed.  I am an explorer.  I like to conquer mountains.  I like to create.  I like to watch my dreams become reality.

But now I am tired.   There is no more wind for my sails and I am stuck in still waters.  My body can not support my mind any more, can not be a vehicle for my visions and conquests.

I am tired.

I wake up in the morning craving another 8 hours of sleep.  I start the day anticipating the moment I can get back to bed to nap.  Getting out of bed feels as hard as it used to feel to climb mountains.  The relentless needs of the kids feel as insurmountable and impossible for me to fulfill as if they were not 2 but 2 dozen.  The afternoons drag as I anxiously wait for 6 pm to come so Owen will take the kids out and I can collapse in bed.

The fight has been punched out of me.  I look at Nathan now and I remember how I was a Mother Warrior, how I fought and fought for him, how I went to the ends of the earth to help him.  Now I just hope he doesn’t get too twisted and knotted and that he retains some semblance of happiness.  The fight with the school, the fight for his services, the fight for the right therapies, the fight against this world that simply could not see my son’s potential – I just can’t keep it up any more.  I fight the fights that I have to fight but they take the last bit of energy I had.  I fight like a zombie, no real person inside.

The 100 plates I used to keep spinning in the air are now mostly all shattered to pieces on the floor.  Even 1 or 2 plates seem overwhelming now.

Owen thinks I am lazy.  He tells me I need to stop looking for excuses and I should get the heck up and do what needs to be done.

And he makes me wonder – is he right? Am I just being a lazy @ss?

But the word lazy next to my name feels so strange.  She who never stopped.  She who always juggled at least 100 plates.  She who managed several businesses at once, while caring for a special needs child.  She who played water polo in college, did an hour and a half of hot yoga almost every day, who ran up and down hills like they were nothing?

Chronic Fatigue, says the doctor.  Myalgic Encephalomyelitis.  A new beast.  Could this explain everything?  She claims I have all of the symptoms – bar none.  She claims that without a doubt everything that is happening is related to this disease.

But how does one go from being an energetic exuberant explorer to a bag of bones with no energy?  How does one develop Chronic Fatigue anyways?  And where’s the pill to make it go away?  Please?

I am so tired.  And the shame makes me even more tired.  Shame that I don’t have the energy that I used to have.  Shame that I can’t take care of my kids the way I would like to.  Shame that I just can’t keep up.

Supposedly I am in treatment already.  Supposedly I will feel better soon.  Supposedly the homeopathic remedy I am taking will go deep into my system and help to eliminate the cells that are contaminated with the xmrv virus that causes this problem.  Supposedly now that we know what is going on it’s just a matter of giving my body time to react to the remedy and start healing.

I hope so.

Because I am tired.  So very very  deeply bone-tired.

And I hope and I pray and I hope some more that I have enough energy to make this a healthy baby.  That my body has enough to give to this child inside of me who needs so much.  I hope that he’s taking it all and making himself well and healthy because I can’t stand the thought of hurting another child.

We continue working with Nathan on the Dynavox. I love that through the Dynavox we get glimpses of Nathan’s thoughts and true understanding of the world. I am going to share a few of these glimmers:

(PS – the computer reads his retina, so all he has to do is look at something and hold his gaze, and if he holds his gaze long enough, it will “select”)

(PPS – all the videos are super short – you won’t spend more than 5 min’s on all of them!)

 

Notice how Ronna asks him – “Where’s your hand” and his hand immediately starts to move. He can’t instantly move it and give it to Ronna – but you can see that the understanding is there. Some people think Nathan doesn’t know his body parts – think again please.

 

He not only knows “eyes” – we can not ask him “W” questions – what are these? And he can answer.

Does he know his animals? He surely knows pig:

 

And lamb

 

Here he had to identify the picture of the animal, and then look at the animal after it appeared in a location in the “farm”. Ronna cued him because the buttons are a little too small for him, but he not only chose them, he then found the animal in the farm.

 

 

He knows how to play “Hide and Seek”. In this game, the character hides behind one of the objects in the screen – a tree, a chimney, the mailbox, etc. Nathan figured out how to play the game, and will look until he finds the character.

 

He likes boy noises, like any little boy:

 

He is also WILLFUL. He REALLY wanted to watch TV more than anything, and turned it on many times DURING session and tried finding ways of telling us he wanted to watch TV (I have like 10 clips of him turning on the TV or telling us about the TV, but I won’t bore you with them all!).

Notice also how, once he says “I need lots and lots of kisses”, he looks at me with lovey dovey eyes. He does this EVERY TIME. He knows exactly what he’s asking for – and he loves to ask for them!

 

In this video, he chooses a page where I’ve forgotten to put the button that takes him to the main page. Since he couldn’t get out on his own, he went to the “talk” button, and instead “told” us that he wanted to play something else, so we could help him get out of the page. Smart or what!

Here’s another one where he sneaks the TV on.

 

He’s still trying to tell us that he wants to watch TV – but now he’s using Belle!

 

Last time Ronna was here, she added a button for “Put the toys away” to prevent him from jumping from one activity to the other too fast. He picked it up really quickly and today he said many times to put the toys away after he was finished!

 

Also notice how he gets around, from one page to another to another.

 

To get out of the previous page, he was able to use the top navigation – which is a tiny tiny square! Ronna comments on how impressed she is with his eye gaze – he really IS impressive!

The videos of the last activities were brand new and he saw them that session for the first time, so he was still exploring all the boxes (he can’t read, so he has to select them to hear what they say, so he knows what they represent – except the shapes that are obvious like car, etc).

Nathan has come such a long way in the last few months of working with his Dynavox and we are SO SO proud of him!

This machine represents his voice, his freedom, the ability to finally control his environment, to give us a glimpse of what’s in that gorgeous happy beautiful head!