Well enough about me...

What do you think about me? Just kidding, but seriously I want to talk about my amazing son.

Will has really been doing a fantastic job. He has his struggles, but overall he is doing great with all the extra demands being put on him. He spends most of his time at school up in his mainstream classroom. He is writing poetry, which his teachers like so much they have him get up in front of the classroom and read it to the class. (And he does! How freaking awesome is that!!!). He is still having a hard time with the other students. Sometimes he is bullied, other times they are just being impolite. The teachers are working with him to know the difference and how to deal with both instances.

At home he is becoming very independent. His staff is working with him on making his bed (including changing his sheets), folding and putting away clothes, cleaning bedroom, vacuuming etc. he's doing such a great job, but he struggles with the demands.

With all of this, he has added to his stressors. Although I hope it becomes a positive outlet for him: he has joined the drama club. I almost fainted when he told me he wanted to join. I got the permission slip and filled it out. He turned it in the next day. Today was his first day. Unfortunately I was not home to hear all about it and was unable to call him to hear all about it. I was told by his dad that he did well and enjoyed himself. I can't wait to hear all about it in the morning. I'm so proud of my son for taking the initiative and try new things. Who knows, he may follow in his mother and uncles footsteps and love the stage.

Let the journey begin.....

Day 3

Hi all. Just got home from day three of IV steroid fun. My son was with me again today. He did very well. Only started to fall apart once but held it together when I gave him my phone to play with.

He started out taking funny pictures of himself and me on his computer, made his own game out of the monopoly card game I brought, was super excited when he realized they had cartoon network on the tv there and that it was playing one of his new favorite cartoons.

They put the new IV port in my right elbow this time. They left it in so here's hoping I don't screw it up before my treatment tomorrow morning. Will was very upset to see the needle still in my arm. He started crying, I did my best to reassure him it didn't hurt. I hope he believes me. He WAS quickly diverted by talk of snacks (ah to be 10 again). He even jumped out of the car and helped me pump gas to help. He offered to go to his grandparents for a few hours to give me a rest. What a thoughtful boy I have! Oh wait, turns out he just misses them and is hoping for ice cream. Oh well, we'll pretend he is more concerned with my welfare.

So now we are home, he happily ate chocolate covered pretzels after having to eat an apple first and is on his computer playing God knows what so I ca relax for a few. Life is good

Again, pictures in random order.... Sigh, maybe I need to look into fixing the computer? Maybe?

Anyway pictures: 1. My new IV site, 2. Will's silly picture of me, 3. My arm wrapped up for the night, we'll see how well I sleep adding this into the mix ;), 4. A very bad picture of me showing how flushed the steroids are making me. (good thing it's only 5 days, so I'll be purple by Sunday but hopefully won't turn eggplant. lol) 5. The silly picture Will took of the lovely nurse who set me up.

Have a great day everyone. Btw: comments etc are always welcome in case anyone wants to know. Enjoy!

Day two

So yesterday was day two of my IV steroid infusions. Will went to his grandparents house so I could have a break.

It was stressful interactions with my parents due to the argument (outburst) from the day before. Anyway, I dropped him off and drove to my appt. I got there and they flushed my IV port (left in from the day before) and hooked me up.

For anyone who has NOT had IV steroids- I highly recommend you never try it if you don't have too. Sleep is nonexistent, everything tastes like rusty metal (yuck!) and you feel a little jittery. Or maybe that's just me, who knows....

The weird bit was when it was all over. They tried to flush out the port but the IV port had failed. I got all the medicine before it failed. Hmmm, that just seems strange to me. Anyway, they removed the port and will put in a new one today somewhere else. I wonder where? The other bizarre part to this was that my hand didn't bruise. I'm very impressed with this as I bleed EVERY time I'm stuck with a needle. Ok, I guess I can't say every time anymore can I?

All in all, not a bad day. I got a little reading in, a little rest without my sweet son. Funny thing- because he didn't come with me (maybe) he was feeling fine and asked me several times how I was feeling. How sweet is that? I never thought he would be asking so often and genuinely seem concerned.

I have such a wonderful boy who is growing all the time in all areas of his life. I am so proud of my son. He amazes me every day. Let's see if he can keep it up today and tomorrow at my appointments or will he become sicker than I am? Got to love kids.

Again, pictures are random since I can't put them where I want or caption them. I apologize. Try are of my hand with NO bruise. Praise God! Hallelujah! The second is of the bruise that developed from me baby vampire bite, and the third is me getting my steroids. Seriously, I better be wonder woman by Monday! Have a great day everyone.

Children's songs and nursery rhymes

Today was another really hot day. I spent the first half in the house cleaning. Partly because I needed to and partly because my parents are coming over in Friday to have a small BBQ for my sons birthday which was yesterday. OMGoodness my beautiful baby boy is now 10 years old. He is no longer a baby and has hit double digits.

Anyway, after picking him up from school at noon we came home and I let him spend some time playing his new wii game he got the night before. As the day wore on though I could stand the heat no longer. I declared the wii to be turned off, swimsuit donned and floats grabbed. We headed off to the pool. (and by pool I mean one of those 8ft round quickset pools) we had so much fun. More interaction than usual. We talked and laughed, splashed and wrestled. The best part was when he was pretending to be a baby asleep and I sang Rock-A-Bye-Baby to him.

This prompted quite the discussion about children songs and nursery rhymes. Some of them are funny, like Georgie Porgie. Some are just straight out frightening. Like Rock-A-Bye. I mean who wants to be sung to about having your cradle fall from a tree? How is that supposed to make you feel safe? Or Little Miss Muffet, spiders are scary to most people. So why would we want to enforce that thought by telling kids a spider scared the living daylights out of poor Miss Muffet? But then tell them about the cute spider who crawled up the water spout? Make up your minds people!

My son laughed so hard he started drooling (low muscle tone in face causes him to still drool when overexcited about things). I would sing a song or say a nursery rhyme and he would laugh and point out why it was silly or strange. I was so impressed he could pick up on these things and it made for quite the delightful conversation as I got a little insight as to how that fascinating brain of his works.

Picture is from A Light In The Attic by Shel Silverstein. I always loved his version of this classic.

Pictures my son put on my phone

This makes him happy, therefore it makes me happy....

Very rough week

This last week has certainly been rough. It felt like I was being kicked in the teeth at every turn. My ex continues to anger and frustrate me due to his taking advantage of me and my home as often as possible. Work has been more stressful than usual with a lot of call outs, people threatening to quit, lack of support from my superiors, and filling in on multiple shifts beyond my regular shift. Then there is my son who is now lying and stealing from me. On top of all this, I've had 2 tire blow outs in 3 days, replaced them and then went for an alignment only to be told that I needed 2 ball joints as well. Can we say expenses I can't afford?

So yes, there has been a lot more stress than usual. I haven't been as positive as I could and should be this week. But you know what? That's ok, I think I'm allowed a little melt down or 2 (or 4-10) whatever.

But you know what? Through all this my ex was supportive in some ways, my boss gave me a break at the end of the week and even ran the errands I was supposed to. My son gave me hugs, giggles and a wonderful weekend devoid of a lot of stress.

While picking up my car ---cost way more than I originally thought---I got to see an old friend, and now my car is safe (well, at least safer), my mechanic is letting me make payments, my parents have the cutest little puppy (which I want to steal!) and I've been able to sit outside and read while listening to my son play with the neighbor kids and laugh.

So did I have a bad week? Yes, I absolutely did. Did I have some amazing moments this week? Yes, I absolutely did. Did my week end on a good note? Yes, yes it did.

Life isn't always perfect, in fact there are times we want to run away and quit our lives (or at least take a month long vacation from it) but if you hang in there, it is all good in the end and worth all the stress and heartache.

My life is good. Now for that vacation......

Self reflection

As I sit on my couch this morning icing my still swollen and slightly sore ankle I am taking this time to self reflect on where I am in life.

If you had asked me 10 years ago where I would be now, it would NOT have been here. I'm still overweight, I'm in the final stages of getting a divorce, I have a special needs son, I have MS and I have a great job but it doesn't pay enough to live comfortably at all.

However, I'm not all that unhappy wit where I am. I am out (almost completely) of an unhappy and dysfunctional marriage- wont go into any details as he's not a bad guy but..... Anyway, my job is still one I enjoy and I'm good at it, and I get to help people everyday.

My son is the light of my life. He brings me joy even on his roughest days. It doesn't matter how dark it gets, whatever the struggles are. My son is my world and it will always be a good day if I can see his face.

So really I have a pretty good life. It may not be where I had envisioned myself to be, but I'm happy where I am. This new life promises to be better than I could have imagined.

Reminiscing and voodoo dolls

Did I get your attention at voodoo dolls? Well, my ankle is a little messed up and I don't know why. I'd call the dr but can't afford it. Anyway, I've been given a couple of possible explanations as to what could have happened. My explanation was that I made a mistake in my sleep. My favorite? Someone used a voodoo doll. ;~}

Who knows what the real answer is, maybe the doctors are right and I'm "at that age" (hush your mouth!). Anyway, it's just one more thing to add to the ever growing list of issues to accept and deal with.

But you know what? I'm ok with that. Today, I'm in a pretty good space. My son is doing well, some bumps along the road sure, but overall he is amazing. My MS is maddening for sure, depressing sometimes and overwhelming occasionally, but I'm very lucky that it really IS a quiet case. So for today, on this wet and dreary day, I'm feeling pretty good about things. Gimpiness and all, it's a good day.

The day after

Today is the day after Thanksgiving.  I have been posting all over Facebook what I am thankful for.  My family, friends and most of all my wonderful son.  Now there are other things I am thankful for, such as having a job, a roof over my head, clothes on my back, and food in my belly.  I know the lst could go on and on, but I will stop there. 

Holidays have a way of being overwhelming to the general population.  They are much more so to a child with special needs.  We have now entered the most stressful time of all.  Most people can handle the bombardment of sensory input with a certain amount of ease.  These special children have a harder time.  They can not process all the input coming at they from every direction.  These children are on overload, from the word go. 

My son is one of these children.  I have been dreading the holidays for this reason.  I have been expecting melt down after melt down.  Tantrum after tantrum.  As well as a few bruises along the way.  I can't say what the rest of this season will bring, but so far my son has blown me away with his ability to deal with Thanksgiving.  We went to my aunts house as usual, Will brought his laptop to use as a way of calming himself.  He was a little withdrawn, but that's OK.  With so many people there, and a TV loudly playing a football game, I'm really not surprised.  When it came time to eat, he tried a few things I asked him to, (even though he didn't want them) and almost cleaned his plate.  He asked to be excused, he thanked people for moving for him so he could leave the table.  He thanked my aunt and uncle for the meal.  When he had had enough, he quietly asked if we could leave.  So we left.  No dessert for us, (but then again I REALLY don't need it).  We brought left overs to my parents house--my mother's on bed rest and so my parents didn't go--Will played a little there.  My parents asked him questions, he told them quietly and calmly he didn't want to answer questions.  When they continued, he got a little agitated, but remained in control.

We got home and had a quiet evening, with mo melt downs.  This is usually the time where he falls apart.  He holds it together so well for so long and then the least little thing will send him over the edge.  But not tonight!  Went to bed and fell asleep quickly.

We woke this morning, had a quiet morning, I put the tree together.  He was patient, but told me frequently that he wanted me to take a break and play with him.  When I was done with the tree, he actually helped me for a little while, I stopped and played.  Then I set on the lights.  Again he offered to help for a short while, encouraging me when he saw I was getting frustrated.  Told me it was OK and I could stop for a while o play with him since he missed me and didn't want me to get angry.  I stopped, we played, we laughed, and I got back to work.

When I was done with the lights I asked him if he was ready to help put up the decorations.  He said "Not now."  We waited.  I asked 3 times, every time I got the same response.  I finally, with a frustrated tinged voice, asked him to pick a time.  The cracks appeared.  He told me he didn't want to put the decorations up, he wanted to get out of the house.  We went to the library.  He researched hamsters, and took out three books on them to read at home.  I got out the decorations, he stated he would put on the garlands, and that I could take a picture of him holding them in his hands.  I must admit, I took advantage.  I turned off the sound to my phone a took a few more.

The rest of the evening passed in giggles and smiles.  There was no arguments over dinner, meds, bath, or brushing teeth.  We went upstairs at 7pm and read the rest of a book we were already reading from the library, and he quickly fell asleep, even with protest that he was too tired to sleep.

I must admit, I was relieved.  I imagined full blown melt downs last night and most of today, but my boy is growing up.  This of course doesn't mean I won't get them tomorrow, or somewhere throughout the rest of the season, but for now things are good.  We will keep things very low key for the next month, hoping to continue this good fortune, but there's too much out there in the world for it not to affect him.  Whatever happens, he is my beautiful son, I love him more than life itself, and will always be proud of the way he manages to cope with this overwhelming, sensory saturated world we live in.  He is my hope, my inspiration, and my heart.

This is the only authorized picture in the bunch

And this is what the tree looked like when we were all done.

A wonderful day

I have had 2 1/2 uninterrupted days with my wonderful son.  Yesterday we had a few bumps in the road, but that's not surprising when you consider, there was no school, went out to lunch with my wonderfully generous aunt, spent a lovely hour with my bestest friend and her one year old son, Will was amazing with him, sharing toys and helping Maggie and I with him.  Then went to my parents home for dinner.  So after such a long day of unusual activities I wasn't surprised to have a rough end of the day.  However he made up for it by calling me upstairs asking me to lay with him after he had calmed down.  I went upstairs and as soon as I climbed into bed he said  "I love you so much."  Well, I can tell you my heart just melted.  So glad we ended on such a sweet note.
Today was even better.  We went to the library, he's getting better at picking out books and trying them.  We've already taken a couple of books out last week.  He let me read a couple of chapters before he decided he didn't like them.  So proud!!  Well, we returned the books today and he picked out 2 more and some cd's all about soccer and the world cups.  Then we went to A.C. Moore where we picked out a couple of inexpensive crafts to do together. (Mario inspired)
Then we spent a quiet day at home putting his Mario stuff together and playing.  His grampy came over to play for an hour or so.  We had dinner, played some more, had a bath- didn't even fight me about washing his hair!!!!- then brushed teeth and went to bed. 
I have to say, as much as I love spending time with Will playing and listening to him, my favorite time of the day is bedtime.  We read some and then we snuggle until he's almost asleep.  I'd stay there forever if I could, listening to him breathe and watching his face relax while he fights sleep.  He often tells me he's too tired to sleep. Isn't it funny that those are the nights he's asleep almost before the lights go out?  I love him with all my heart.  I will do anything for this sweet child who struggles so much with things that most take for granted as easy.
I love my son, difficulties and all...............................

My back

We had a freak snowstorm a couple of weeks ago.  I had to go out and shovel the heaviest snow/slush I can remember ever having to shovel.  I remember I hurt my back while doing it.  Well, I am at that age where things take longer to heal.  I think I slept wrong last night because I woke to it really hurting.  Didn't help that later in the day I was leaving my house and started to fall down the porch stairs.  Luckily I caught myself or it would have been a lot worse I'm sure.  However I tweaked my back again.  So now I am sitting here waiting patiently for my pumpkin seed to come out of the oven so I can take some pain medication and go to sleep.
I'm not writing this to complain, because I am actually grateful my back hurts.  Grateful you ask?  Why would I be grateful?  Well, because my back was bothering me I was able to take the day off from work.  I don't do it often, in fact only when I feel like I'm at deaths door will I actually call out of work.  ( I have worked through colds, migraines, regular headaches, aches and pains, etc.) Then I did the almost falling thing.  This I think was Karma because now I really wouldn't be able to work.  And part of me was feeling guilty for not working my shift.  So, long story short.........I am moving slower than usual, but I got to surprise my beautiful son by picking him up from school, and spend a glorious afternoon/evening with him I wouldn't have been able to share if it wasn't for my back.  So today I am grateful for my back pain.  Because of it I was able to create memories I wouldn't otherwise have been able to create, and it is a reminder to slow down every once in a while and take care of myself.  I don't often listen to the whisperings that tell me to take care, so I sometimes need to be "hit upside the head" to get the message.
Message received loud and clear.  (Until I forget about it again)

Couch

My couch is my new best friend.  We have spent the last 2 days together.  I have slept, cried, zoned out watching tv, and eaten (things I shouldn't have) on my couch.  I don't want to move, I want to quit work and hide on my couch forever.  However, I realize that this is not an option for me.  I am off the couch at the moment (the only way I could blog about my beloved couch) getting ready to pick up my beautiful child from school in just under an hour.  Then we will have the rest of the day and all day tomorrow together.  I know he will want to do many things during this time, play games, we've already discussed going to the library and children's museum tomorrow, and maybe seeing Granny and Papa today.  We also have to go grocery shopping today too, as I was too busy being one with my couch all morning.  But all I really want to do is lay on the couch and snuggle/hug/kiss/ and be with my son.  I want to just be with him, but I know that, not only will he not want to do that because it's boring, but we  would both be missing out on all the great things we can be doing together.  He hasn't gone to SH yet, it hopefully won't be until the first of the year (if at all, a girl can hope can't she?) So why do I feel as if I'm losing him already?
Snap out of it already!  He's here, let's build memories that will hopefully get us both through the tough times ahead.  These are the words I'm trying to live by now, in this moment......

I also need to try to stop shutting my friends out.  I find that when in this depressive state I shut down, as I'm sure a lot pf people do when feeling this way.  I don't want to always complain when talking to friends, so I stop talking, I get very quiet when on the phone.  I need to find a way to be able to open my life up to people again without making it all about me and my problems.  I'm trying.....I'm a work in progress.......