I am in the process of moving the blog to its own domain!

Our new internet streetcorner is http://www.jbearandme.com

Here’s to a new beginning on a new beginning.

(once I can make this thing actually work)

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Bloating Away

I’m too uncomfortable to sleep so here I am, chatting at the internets.

Life is a lot easier right now, despite post surgical insanity. This morning the horrible heatwave of 2013 ended and it was as though the world heaved a sigh of relief. I said elsewhere that my body has felt like a clenched fist holding broken glass since Monday of last week. Now, finally, it’s as though everything can start to relax even if I feel so full of air everywhere that I might pop or blow away.

Moving about is improving. It’s not great and I am getting back pain like I did post c-section as my back overcompensates for my weakened abdomen but it’s not nearly as bad. It’ll continue to improve. I only take the narcotics I was given at night because while they work alright, I hate them.

Am I the only person in the world who hates narcotics? I refused them for weeks and weeks and only gave in last week after so long of discomfort, pain and just plain not resting. Then, of course, post surgery I really needed the strong stuff. Dilaudid was no freakin’ joke. That stuff knocked me right down but allowed me the ability to get precious sleep. Thank God too, cause I had the worst of roommates.

Another tale for another time, maybe.

J is still struggling with all that is going on. I know he gets more than he might initially let on. I see it in his decision making but he is, after all, a 3 year old boy. He wants to rough and tumble! He wants to crash into me! He wants me to pick him up for cuddles and hugs whenever he wishes it! So this is still an area of sorrow to me. It’s silly, I know. Soon enough I’ll be smothering him with hugs and throwing him around as I used to but so much of his communication in terms of affection, care and just play is physical that when that absense is forced, it leaves a dreadful hole in our interactions. I improvise when I can but overall, patience is going to have to prevail on this count.

I need to regain my momentum with fundraising. I have great ideas for things to do from great people and cannot wait to sit down and explore the options and start putting things into play. Having my strength and health back is absolutely key to this effort and it too is going to demand patience I don’t know if I have. I am a nervous person terrified of failure. I cannot fail at this, not for J, not in a million years. 

So. Soon, I hope, big things will start to come together. Disappointed in some people I’ve reached out to who initially seemed on board but who have since faded out. Life must have gotten in the way but I cannot help but feel a little sad for it. 

I just have to have faith, right?

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It might be the vicodin but I cannot find the spellcheck on WordPress right now so forgive me if this entry reads in gibberish. I’ll fix it in the morning.

A Weird Interlude

Last night, like so many other nights since he began running, J dashed over to me for a hug. This wasn’t to be like other nights though, my abdomen gripped with pain as i recover from surgery.

I cried out when he crashed into me. He went to my side immediately and buried his face on the couch. His expression when he finally did look up crushed me. He was absolutely heartbroken. Why couldn’t he hug me? Why did I cry out and edge him away? What was wrong?

All I could do was rub his back, kiss his head and cry as I told him again and again he was a good boy and this wasn’t his fault.

This morning, he stayed to my better side. He even got out his doctor kit and examined me. I think I did okay. He seemed comfortable with the outcome.

Words may be few from him but man, he says so much to those who pay attention. I’m forever in awe of him even when I’m sick.

image

sir j-bear enjoying a happy face pancake with mama a few days before mama had a gallbladder eviction.

be back soon with more decent content!

Frustration!

.. And for once it has nothing to do with IEPs, public schools or autism care.

On 6/20 I went to the ER and spent a night in the hospital because there was a distinct worry that I had blown my heart out or something given the intense pain and pressure in my chest. The discomfort was crazy and I spent the night getting bloodwork, a nuclear medicine test to determine my lungs were free of embollism and finally a stress test come morning. My heart and lungs passed with flying colors. I was discharged with a curt “follow up with your primary care doctor and take some antacids”.

Fun. 

The discomfort has never left and I have felt blown off repeatedly. The GI doc sent me for an ultrasound just to rule out problems in my abdomen.

She never got back to me to inform me I had gallstones. In fact, I didn’t learn about them til my trip to the ER last night because I felt like I was unable to breathe all over again from the unending pain and pressure.

So now I have a gallbladder full of stones I am sure the surgeon will pat me on the head and send me on my way over.

So tired of doctors.

If I go quiet for a while, it’s cause I am that fed up with the medical profession and took out my own gallbladder.

Fabulous Dinner Dates

It’s oh-dark thirty here and I should be in bed. I will be, shortly. I wanted to write this down first.

This afternoon Mr. Pickles and I ended up taking a nap that was way too late and way too long to be conducive to a good bedtime. This should have led to a terrible evening if past experiences meant anything. If he naps too late, the evening is a chaotic disaster nearly every time. I was braced for total fail on all fronts. 

I was hunkering down, preparing to put on heavy padding and bury myself under a fort of pillows for my own safety from the three foot monster in my house when I realized we needed to make our monthly run to Wegman’s out west of us. I love, love, LOVE that grocery story but it’s at such a distance from us that monthly runs are generally all we make. We were overdue to go and it was coming up on the time traffic would die down for the evening. I seized the opportunity, loaded J-bear into the car and we bolted like we had broken out of Alcatraz.

It was awesome.

Traffic? None to speak of. Weather? Gorgeous. Plans? Fluid and completely open to our whims. 

We stopped at IHOP right next to Wegmans and enjoyed a fun dinner with not a lick of healthy food. I figure it’s a celebration of his first week of school and his success there and at the doctor today. He enjoyed a Funny Face pancake, even braving touching the pancake though he would not actually eat the pancake itself. He gobbled down whipped cream and chocolate chips though. 

told you there was no healthy food to be had. Unless bacon counts, cause he ate half a piece of that.

He behaved wonderfully. I cannot even express enough how well he did. He stimmed, yes. He babbled, loudly at times, and he even engaged in a few behaviors I find awkward to deal with in public (harsh head shaking and smacking himself in the face :'(). A lot of people might not have characterized an outing in a restaurant with all of these behaviors as good but they don’t know my boy. They’ve never seen him just spend the whole time screaming, trying to vomit (or succeeding at it), and other upsetting and sad actions. This was him being more organized and more within the here and now and I loved it.

The grocery store is one of the few that he actually enjoys. You see, Wegman’s has this huge train that runs over the dairy section. If nothing else will calm him, that will. Today a car cart was available so let’s just say this boy had it made in the shade. He loved it, remained happy and calm through the entire trip and had no freak outs when I might step away from the cart very briefly to get an item or three.

These are victories for us. Usually, shopping trips are so exhausting for me that I rarely want to go again. I usually miss half my list and end up so exasperated I want to cry along with him. It is a rare day he’s not bolting or stimming on carriages or pulling everything within reach off the shelves.

I love this. I love this so much. I know this is just today and that tomorrow might be an overwhelming nightmare but it was not today. There will be more todays, enough to make getting through the nightmare days worth it. 

Til then, I am going to be very, very grateful for the wonderful date I got to have with my best boy as he ate chocolate, whipped cream and milk for dinner. He will not be a little boy forever and every chance he has to be a “typical” child makes me happy beyond measure.

I Cheer

This is going to come out silly and sappy. Fair thee be warned, I am prone to episodes of this. There are worse things I could be prone to episodes of.

When a parent, be they a special needs parent or not, tells me about something their child accomplishes I cheer. This means that there are things I cheer about that people who do not deal with the special needs community regularly might think are weird. 

I cheer first words, actions, foods… I cheer new things done by children who have strict aversions to the new and unfamiliar.

I cheer a young adult with autism making their way into the world and finding success.

I cheer for a child who eats with gusto after a lifetime of meals equating with horror and pain.

I cheer a child swinging gleefully where such motion would elicit terror before.

I cheer for all of our children. These accomplishments may seem small or silly to some and other accomplishments may seem huge yet all of them deserve cheering for. And I love doing it.

It’s okay to cheer. It’s okay to be excited over something that others may not understand the excitement over. Whether they take the time to learn context or not, you know it. Whether our children outwardly display response to our praise or excitement, they know. Their words may be lacking but their hearts and minds miss so very little. They deserve to celebrate their accomplishments and it’s our job, as the grown-ups and trusted people in their lives, to teach them how. That feeling of success inspires the drive for more success despite every setback that may be met along the way.

Every time they fall, I’ll be there to pick them up even if it is with just a word because I know soon enough it will be time to cheer again.