Just call me Jiji

…me, just pretending to be me ….now, where did I put that cape??

Archive for the tag “Stay at home mom”

It’s my party and I can run myself into the ground if I want too!!!!

With this year being as difficult as it has been, doing something I truly enjoy hasn’t been much of an option.

One of the things I really enjoy doing is planning something special and hosting parties for special occasions and holidays. Traditionally, we host big Christmas and Easter celebrations for our family of 17 every year with special extras like traditional Weinachts Teller and Easter Egg Scavenger Hunts, birthdays of course are also real big here, and I plan big too complete with banners, balloons, and birthday fairies. Then there are the smaller  holidays and events that I try to make fun and memorable, like New Years Eve where Leon gets to stay up late and bang pots and pans at midnight; Valentine’s Day where we decorate the windows and make heart cakes; St. Patty’s Day where Leon leaves out a decorated treasure box at night for the Leprechauns to fill with gold and greenery; the last day of school where we have a big get-together in our yard complete with wet and wild summer activities to welcome summer vacation; 4th of July BBQ, which Ron has been hosting for 20 + years; Halloween… etc… etc… etc..  .

But due to all my health issues this year, I just haven’t had it in me to make these special events happen, I even had to cancel Easter at the last minute this year because I was too, too sick to make it happen, and that is saying a lot. I was so incredibly disappointed in myself. And for as much as everyone reassured me that it wasn’t a big deal. It WAS a big deal to ME! I loooove hosting the holidays, it was a big letdown for me and I lost out on doing something that makes me happy doing it. Even the Leprechauns made a poor appearance this year because I just could not do it.

Leon always looks forward to the backyard party we have on the last day of school and I was not about to disappoint him or myself. I knew full well that I would pay for it in the end, and that it probably would end up being a bit too much for me, but there was no way I was not going to have our year end “Welcome Summer Party” for Leon and his friends (and for me and my friends too).

The invites went out, and the responses came in. As the date came closer I started to have some doubts. Every day has been a painful one for me at some point during the course of it. There was no reason to believe that this day was going to be any different. I wondered if I would make it through my own party without excusing myself to take a nap. I started begging Ron to take the day off so he could help me get through it (that was unfair of me I know).While he could not take the day off, he did go above and beyond in helping me turn this hoarders paradise back into a home.

Leon’s last day of school was a half day on June 25th. I spent the morning rushing around and breaking a sweat as I was working hard to get the yard ready for 20 + kids and 10 + moms; that I had absolutely no time to wallow in the pain.

It was a really great day, despite the threat of rain. The kids arrived with their moms and headed straight for the water slide, while us mom’s headed straight for the Coconut Pineapple Mohitos.

I didn’t get to sit in a chair for any good length of time with all the running around I had to choose to do. I had a bunch of fun summer activities planned.

While we waited for the rest of the guests to arrive, the kids jumped from pool to pool and discovered the big box of prefilled water squirters.

Once all the guests arrived we picked teams for the water balloon fight. The kids had a BLAST!

There where plenty of other activities for the kids as well.

Like jumping on the trampoline;

playing with Lego;

drawing with chalk;

 building a castle;

 huddling together in pop up tents;

and just all around having fun with good friends.

It was tons of work to put it all together and keep things rolling! By the time I finally able to really take a seat and relax; I was exhausted and in pain. The pricklies on my arms were feeling hot and hurtin, and my legs were heavy and aching pretty bad. As the party was winding down I was dreading the worst part of the party, and that is the clean up. All the work to get it together and only a few hours later it needs to all be broken down again. I was NOT up for it any more.

As luck would have it I have some really amazingly terrific friends!! Everyone just chipped in and helped put everything away in no time, despite my arguments to “just leave it”.  In a blink of an eye the pools were drained, the castle was boxed up, as was the Lego, the chairs were stacked by the garage and the dishes were done. I don’t know what I would have done without my good friends to help me.

And now here I am just days later and I am still paying for it. I may have spent the the last 2 days in bed, but it was definitely worth it to see this smiling face;

And hear him say “mom, thanks for inviting all my friends over and having a party; I had so much fun!”

Yup, it’s my party and I can run myself into the ground if I want to!

… Cause it’s worth it!

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Fibro? MS? Or Something Else?

I made a list of the symptoms that I have been having over the last 6 months to reference, at my doctor visits. Some of these are symptoms I’ve had forever (which I have always attributed to my previously diagnosed Fibromyalgia); some I have had several times before but I didn’t realize there was a connection; and some are entirely new to me.

Basically I just want to find out what the Hell is wrong with me? Is it still Fibro? Could it be MS? Or Something Else?

Something is definitely very very wrong. A whole new wrong. A different wrong

The fact is I’ve been experiencing pain since before Christmas 2010 from what I assume stems from a winter triggered flare. This is what my year has been like

  • Have had major bouts of fatigue, tiredness, and energy loss since winter began
  • Feel poorly 80-90% of the time with very little relief in between
  • Been bed ridden – spent all of Jan and Feb either in bed or on the couch – not a day goes by since that I don’t need to rest between activities
  • Can’t do my normal every day activities – include watching my niece –interfering with my ability to earn a little money and help my sister out
  • Had sinus infection turn bronchial in Feb.-mar –it lasted 7 to 8 week duration
  • Am non functional for better part of day due fatigue, pain, and weakness
  • Weakness to the point of can’t lift simple things like a drink, or stand for even short period of time
  • Difficulties standing up straight in the mornings or after sitting for too long
  • Constantly feeling stiff
  • difficulty  walking- feel all crumpled up, stiff, crunchy
  • popping bones all over
  • difficulty lifting- too much pain in wrists, hands, fingers, and arms
  • same when required to use legs to lift
  • TOO weak, everything feels heavier
  • Difficulty focusing/ staying focused – lose train of thought,  can’t finish sentences, forget why in the room or what was just said
  • Can’t get organized, everything suffers, home family friends, life
  • Very Depressed, hopelessness, misunderstood, frequent and long crying jags
  •  Nausea, dizzy and sickly feeling
  • Headaches
  • Patches of prickles , like needles poking from inside out, on arms, neck, face

EXPERIANCING PAIN IN:

  • Hands & Fingers – feel swollen, can’t bend, or grasp. Skin gets too tight. COLD, blue finger tips (both but more intense in right), shake/unsteady, prickly, tingly
  • Wrists – no strength, feel like it’s going to crack right off, prickly , tingly, hot
  • Arms – aches, muscle burn, dead, feel heavy, prickly , tingly
  • Upper arm / shoulder – achy, heavy, prickly  , tingly
  • Neck – stiff, reduced movement, stabs of pain
  • Back of neck/head – stabbing pain out of nowhere sometimes brief sometimes not
  • Face – tingles/ prickles, pins & needles, numbness
  • Lower back- weak cant straighten up, can’t sit long, can’t stand long
  • Legs /thighs – ache, feel dead inside, feel heavy, muscle burn, soreness, stiff, numbness
  • Knees – stiff, feels sand or gravel packed
  • Calves – cramping, sore, tight
  • Ankles – stiff , especially in the morning
  • Skin – prickly, tingly, painful

FATIGUE, FATIGUE, FATIGUE!!!!

  • Have NO energy
  • Fine one moment and not the next
  • Meer walk from couch to bathroom wipes me out
  • Feels like gravity is pulling me down
  • Sudden urgent needs to sit/rest
  • Simple tasks feel like full on workouts – i.e. Walk to kitchen feels like full on hike; doing dishes feels like weight lifting; writing/drawing feels like just did pull-ups
  • Break a sweat just going from one room to next
  • My brain wants to get things done but body wont/cant co-operate
  • Once rested I feel okay and able until I try to do something
  • Even typing wears me out

OTHER PROBS:

  • Forever forgetful – can’t retain or remember info
  • Incontinence – pee when laugh, cough, sneeze, lift, get up too fast, sound of water, see running water, get close to bathroom
  • TMJ – tightness in jaw, wake up clenched, pain
  • INSOMNIA/SLEEP DISRUPTION – cannot get to sleep, pain wakes me up/ keeps me awake, sudden jerking motion, can’t stop moving, can’t turn off body or brain
  • Depression – thoughts of worthlessness, death, long can’t stop crying jags
  • Temperature control – too too cold! Freezing! causes pain OR too too hot, can’t function, need to sit, rest, sleep; difficult finding happy medium
  •  Headaches – migraines, tension, stress, allergy
  • Get dizzy, feelings of vertigo, nausea. Worry I might faint if I don’t sit
  • Eyes get fuzzy, darkness over one eye (left) like it’s shaded or looking through a screen
  • Spend more time feeling bad in a day than I do feeling good.
  • Feel like I am getting no reprieve.

WTF – What The Fibro is Wrong with Me?

 In my previous post I recounted my past six months of Fibro flare-up hell.

It feels all wrong! Not that there is ever anything right about Fibro; but this has been wronger then usual.

Is my fibro changing? Getting Worse?

Actually that is a really dumb question. Of course it is changing. As we age we change, stands to reason that our disabilities change too. Some things get easier to tolerate, while other things get worse.

But what if I am not getting worse? What if this is something completely different all together? It is all too easy to just blame everything on fibro all the time. But the possibility that I could have something in addition to FMS, is feasible, isn’t it? What if I was completely misdiagnosed all together?

This year of pain and exhaustion has felt so intensely bad that this can’t just be my fibro; it HAS to be something more than that.  …Doesn’t it?

I know, I know, that’s what my doctor is for. But there have been issues with the whole seeking medical attention thing this past year. My last visit with my primary care doctor in 2010 was for my routine 3 month fibro maintenance follow-up in October. It was before this flare-up really reared its ugly head, so I reported that I was feeling pretty good at the time. Then winter came in and decimated me with freezing cold weather and blizzards. My regularly scheduled winter flare-up tore me down, big time.

My next 3 month appointment which was scheduled for the end of January, didn’t work out, because I had to reschedule it due to the fact that Ron had commandeered my van for work when his car died and I no longer had transportation. Well, that and it was so bitterly cold that I just couldn’t get out of bed, let alone my house.

Unfortunately, I had to cancel the March appointment too. My sister was in the hospital and sadly, at 23 weeks pregnant, lost her baby. It was a very difficult month both in the weeks prior when the complications in her pregnancy arose, and after – as this was a terrible loss.

We all mourn the loss of the sweet little girl who was taken before we could know her but not before we loved her.

It was the beginning of April that I FINALLY met with my doctor. But it wasn’t a regular maintenance visit; it was a sick visit – for my nasal/bronchial issues. Dr. T is pretty much a stickler about only getting into what the appointment was scheduled for so I was shooed out of the examining room before I had a chance to go into any details about what was going on. But not before he suggested I see a Physiatrist first and then go back and see him. I think he was reprimanding/punishing me for not keeping my appointments…

I had no idea what a physiatrist was, so I looked it up here. And after I checked out the doctor’s website, I felt hopeful that this was going to be my answer. After months of no energy or strength, and constant fatigue and pain I was more than ready for answers. When I spoke with the receptionist to make my appointment, I had to admit that it had been more than 6 years since I had any MRI’s or other testing done. Because up till now I was maintaining my Fibro with meds; and flare-ups, although still painful, came and then WENT.

She told me not to worry; the doctor would order all new tests. When I got off the phone I felt a sense of relief. I just wanted to get answers to what was going on with me. And, here was a doctor that “instead of treating only specific symptoms and illnesses, a D.O. will regard your body as an integrated whole”, according to his website.

I had been going through so much difficulty and pain, all I wanted was to start anew. The seasons were changing and I was tired of hibernating. I had spent so long trapped in my home by the cold weather; my illness; and with still no transportation; and although I still felt like utter crap, I had to force myself to join the land of the living again, if anything, for sanity’s sake. I had been a shut in for so long that even my friendships were suffering. I tend to withdraw from people; friends and family alike; when things get this raw (read painful and depressing). And believe me this was raw!

In my effort to reconnect with my friends (and family) I felt I owed it to them to clarify why I needed to withdraw so much, why I bailed on commitments I had made, why I could not be reached by phone or even return messages. I felt I had to explain that I don’t mean to be a lousy friend, who forgets things, breaks promises, and just disappears.

In the process, of explaining what I was going through, I surprisingly had three separate people who didn’t even know each other suggest that it sounded like I had MS.

MS? Really? multiple sclerosis

I had heard of MS; but in truth I didn’t know anything about it, at all. It would never have occurred to me. When the first person said something to me I did what I always do; I disregarded the possibility that it could be anything but Fibro. After all, I had my diagnosis, and it took forever to get that in the first place, I didn’t want to start questioning it, no way.

But then a second friend suggested it as well. She knew a lot about it and started describing me, to me. All I could do was keep sit there nodding and saying, “Yeah, that’s me!”, “that’s exactly what’s happening to me”, “you are describing me”; her response was, “no, I am describing MS”.

Thoughts that crept around in my head: Oh crap!! Do I have MS? Wait! What the hell is MS?; What are the symptoms?; How do I know if this is what I have?; Do I really wanna know?

So I peeked, just a little, I looked it up on the internet. Just enough to get general info. I am all for getting self-informed and getting educated about something like ADHD, for instance, when your child has been diagnosed with it. But with this, I just didn’t want to read so much in to it, that I’d start self-diagnosing before I even see the doctor. What I read up on was the basics; the symptoms and how one get’s diagnosed.  I also read that it isn’t unheard of for someone suffering from MS to be misdiagnosed with Fibro.

As my appointment with the physiatrist drew nearer I got more and more emotional about how bad this whole year has been so far because of some illness that I have. I just wanted answers and I felt that in order to do that I need to start from scratch. I want to wipe the slate clean and start fresh as if I had never gotten my diagnosis for FMS all those years ago. Like I mentioned earlier, it is all too easy to pigeon-hole everything into Fibro without considering there might be something else going on.

A few hours before my appointment, I sat down and I just started writing and I kept writing until I had 3 pages full of what I needed to remember to discuss with the doctor. I listed symptoms, body parts affected, descriptions of the level of pain I was feeling, the emotional toll it was taking on me, etc.

It was unfortunate that after all the time I took to prepare, I ended up forgetting it all at home. I was beside myself. The poor doctor did not know what to do with me. I just started crying and crying. I could not get my thoughts together, I was forgetting everything I wanted to talk about AND what was worse was this doctor just was not living up to my expectations. I wanted him to have all the answers, to fix me, to order the tests that were going to get me my answers.

The doctor didn’t actually do anything wrong, he was just not right for me. He focused on the pain in my arms and scheduled an EKG/nerve test. Through my tears I managed to tell him I felt that that wasn’t enough. What about the pains in the rest of my body? His response was that he wanted to focus on one thing at a time and he advised me to go back to my primary care physician for a referral to a rheumatologist for my fibro.

I left there in tears. I cried all the way home and by the time I walked back into my house I was sobbing uncontrollably; poor Ron and Leon had no idea what was going on and were very concerned.

I want a doctor that was going to treat the whole of me; not just the parts of me. This is not what I got in this doctor. I realize that I had put way too much stock in this one visit, and my hopes and expectations were waaaay too high. I was overly emotional, and at a loss. Now what?

The fact is I don’t see a rheumatologist although I know I should, but after never being able to get an appointment with the one that I initially had, the one who diagnosed the fibro, I began to rely on the neurologist that she had sent me to. I was maintaining fairly well with the meds that my neuro had prescribed.  Eventually I lost my neuro too, due to the fact that she became ill and left the practice. In the end I never did find a new rheumatologist or neurologist; my primary care doctor was prescribing the medications I needed, so I felt that there was no need to find another one; till now that is.

Last week I met with my primary care physician, to discuss a plan. This time I did not forget my notes. Even so, I was still a blubbering fool, with tears falling uncontrollably from my eyes, as I explained how bad things had gotten and how lost I felt. I explained that I was concerned that what is going on with me was something worse than Fibro and I shared the suspicions of MS that others and now myself had. In the end my doctor told me that he feels that I have extreme Fibromyalgia and that I am suffering from severe depression; he also feels that I am beyond his help at this point and he referred me to a rheumatologist and a psychiatrist. When I questioned the MS again, he told me that he felt it was unlikely that I had MS at all. I would love to just accept that but I am too worried about something being over looked because it is too easy to stick with the original diagnosis. He gave me the name of a neurologist to call, if I felt the need to pursue it.

I do and I did. Feel the need to pursue it I mean. I have an appointment with both a rheumatologist and a neurologist next week. I have not scheduled an appointment with a psychiatrist yet as I have yet to find one that takes my insurance.

In the several days it has taken me to write this post (I can only do a little at a time due to the pain in my arms and hands) the tears have seemed to come to a halt. Writing and getting all these thoughts and feelings out of my head seems to help a lot. But I will bring the tissues to my next appointment; just in case. 😉

Never Say Never…

On the weekends it can be hard to get Leon to spend time AWAY from his video games, but we try our best. He loves to draw, and will often spend time doing that while watching TV. It tends to add up to more screen time than Ron or I are comfortable with. But when the both of us are busy around the house trying to get things done; it is easier to just let him do his thing rather than have to stop what we are doing to make sure he is entertained and out of trouble 😉 .

This weekend we enjoyed the nice warm spring weather, and did manage to get him outdoors for a couple of hours on Saturday, but nothing engages his ADHD brain out there for more than a few minutes at a time. My guess is that there is just TOO MUCH going on around him that finding focus on just one thing is just not possible.

Sunday was beautiful too, but between my migraine and Ron’s aches and pains; none of us got out of the house. By late afternoon I was asleep in the bedroom with curtains drawn and a pillow on my head to drown out any sound or light. That left Ron to deal with Leon for the better part of the day. He actually managed to get Leon away from the screen machines, letting him know that he needed to find something else to do and it could not involve anything with a screen on it.

Leon was surprisingly compliant about it and grabbed a few books out of his room and began to read. Awesome!

He loves to read and likes all kinds of books; chapter books like Goosebumps, Choose Your Own Adventure Books like Journey Under the Sea, Graphic novels like Max Axiom Science Series, but mostly he like reference books like The Big Book of Knowledge from which he can learn all kinds of new and interesting facts. They are all great books!

After reading for a bit Leon brings in “The Big Book of Knowledge” to Ron; opened to pages 26 and 27

The Big Book of Knowledge – pages 26 & 27

 

He points out the passage pictured below and says “Umm, Dad? Is this True???” 

Ron reads it, and tells him, that yes it is true. To which Leon replies; “Sounds Gross!, I am NEVER going to do that!”

**Tee Hee – this kid cracks me up! **

Never say never kiddo… but do wait until you are at least 18 

…and IN LOVE!

Oh and USE A CONDOM!

Gettin’ my Creative Juices Flowin’

I have often heard;

“you are so talented, you should start a business”.

That would be WONDERFUL, I’d love to do that.

The question is; how? I have no business sense and the coin purse is empty. And you know the old adage; it takes money to make money.

And then, there is the lack of confidence in my talents

It’s not that I do not believe that I have any talent, it’s just that I feel there are people out there that are so much more talented than myself.

It doesn’t stop me from enjoying the creative process though. And sometimes I even impress myself with the outcome 🙂

My creative talents have included:

Drawing – it’s been a while, I did a lot of drawing as a child and in my teens. I have only recently taken it up again. I even tried some creative drawing on the computer to make some matching t-shirts for our trip to Disney;

Trip Planning – YES I definitely consider trip planning a creative talent!! And I do it well, especially when traveling with a highly sensory child with ADHD/ODD. Accommodations for travel require quite a bit of creativity. Like the badge I made for him to wear that clearly outlined the rules with a visual prompt.

Badge that "MICKEY" sent to Leon

Event Planning – like my DIY wedding where I made everything from the centerpieces to the floral arch to the ring box to the 150 hand-painted Champaign glasses I made to give as wedding favors to each of my guests.

The wedding arch

Close up

One of my centerpieces and a set of hand-painted champaign glass favors

Enough people told me that I should go into business selling my Glass Painting that I decided to give it a try.  I successfully sold a few pieces but in the end I wasn’t making enough money to cover the time, effort, and money it took to not only paint each piece , but then to pack everything up and transport them to a little craft fair, where I paid $60 for a table, only to sell a couple of pieces that maybe made me $40, and then have to pack it all back up and bring it back home. It just didn’t pay.

I also have helped to plan a few showers, my sister’s wedding, and quite a few themed birthday parties for kids. I love doing it. Especially the themey stuff

I was very proud of the School Bus cake I made on Leon's 1st Day of School

Leon’s 2nd Thomas Birthday Party  – he didn’t know how much I put into this party but I had fun doing it

I made one cake for the adults and little individual ones for each child

Leon’s 5th Pirate Birthday Party – yes my spoiled little child had 3 parties and 3 cakes

I hand-painted this shark to use as a game, it was fun as a photo prop too!

Leon’s 8th Lego Birthday Party;- this was a really fun party!

Lego Mini Marshmellow heads - real easy to make

Kiera’s 1st Ladybug Birthday

Ladybug Themed tutu I made for Kiera's 1st birthday

If I knew how, I would love to make money as an event planner.

Photography  – …is another talent I have. More specifically I have an eye for. Ron, often tells people that I am a photographer, and it bugs me, because I am SO NOT a photographer. I WISH I was, but at best I am a photo enthusiast. The difference being that although I thoroughly enjoy photography, and have an eye for capturing great shots; I pretty much have no education in photography at all.

I can really relate to the guy in this Panasonic Lumix commercial:

..see it’s not me,  it’s my camera! (which btw is a Canon)

…plus some creative digital photo editing too.

Basically I am just winging it.

When Leon was born, my love for photography grew, and my need to share it grew too. I started showcasing my photos on my smugmug website for all my friends and family to see.

First time using a spoon

(btw -gardening is NOT one of my talents)

As a result I was asked by two different sets of friends to photograph their weddings. Of course I said yes, it was an honor to be asked. I never expected to be paid, but when one of the couples thanked me with $1000.oo check , it gave me the confidence to try to make some money doing what I loved.

I got a few jobs and made some money, but most of my jobs were for friends and I had a hard time charging them, so that didn’t last too long. I also  needed better equipment in order for my photography to live up to my own standards.

In general I don’t know that I am so much talented as I am creative and crafty

And recently I have been inspired to try a new craft;

I was honored when my sister -in-law asked me if I could make a few things for her wedding. She pointed me in the direction of Etsy.com where she had seen a few things she had really liked. I was already familiar with Etsy, but I had never really perused the wedding category. One of the things she had pointed out to me, started to get my creative juices flowin again. It was something that I have tried my hand at before, but I didn’t really feel that there was a big demand for it. But with the trend of weddings being a bit more green, the rustic look of woodburning seems to have become a bit more popular.

Woodburning – is now a talent I am trying to cultivate. And I am really enjoying it. And who knows maybe I can even sell a few pieces on Etsy….

This is just a practice piece - but it gives you an idea of what I am going for

Besides what else is there for this SAHM to do?…uh, besides taking care of an ADHD child, managing my Fibro, keeping track of $800/month medicines, PTA volunteering, School Newspaper editor and author, caring for my 3 year old niece, plan playdates, etc.., etc…, etc…                            …oh yeah and maintain this blog.

Reading Between the lines.

For homework today Leon had to use each of his spelling words in a sentence.

This is what he came up with;

1. I’ve got something planned.  ~(Uh-oh)

2. I can’t do it. ~(Phew)

3. I’m obsessed with myths,aliens, and monsters.  ~(He’s obsessed alright)

4. It’s okay I am fine. ~(That’s good to know)

5. I won’t play “Super Smash Bros. Brawl” on the Wii. ~(You won’t??)

6.I’ll play “Mario Kart” on the Wii with Jill. ~(Oh I see what’s happening here)

7. You’ll probably say NO!!!!  ~(It was my first thought)

8. Let’s play it, please, pretty please. ~(Well since you put it that way…)

9. He’s crazy, I’m serious! ~(yes he is seriously crazy)

10. I couldn’t ever hate my mom. ~(I LOVE you too, sweetie)

11. Aren’t you going to play? ~(yes, as soon as your homework is done and your room is clean)

12. I wasn’t here when it happened. ~(Uh-oh, now what happened?)

13.They’ve rigged the game. ~(umm…I got nothin)

14. Shouldn’t you be cleaning, your room!!!  ~(well, shouldn’t YOU?)

15. Don’t play with that! ~( ….things mommy says over and over again???)

 

I think he is trying to tell me something, what do you think??? 

And the WINNER for My Dumb-Ass Move of the Week goes to …

Shoveling Snow!!

Well I wasn’t so much shoveling snow as I was moving it around.

We had 15inches of snow on the ground yesterday when all was said and done. It was quite a beautiful site to wake up too (see previous post)

Poor Leon had a snow day and was stuck at home ALONE with his dear old mom. That would be me – Dear and Old… among other things, like in pain and overly fatigued.

 

We spent the morning playing the Wii (well he played, I got to watch) and watching “Back to the Future”. By 11am I felt we had had enough screen time, I wanted him to go out and get some fresh air, play in the snow a bit, get some much needed vitamin D. But he just kept saying he rather stay in and play Lego. I didn’t argue it, since I had kept him home sick the day before (stomach bug).

Every so often I would remind him of how much snow was out there, and all the cool things, that he could build with it. He finally admitted that he wanted to go out but he was waiting for Daddy to come home first.

I explained that, he doesn’t get home till after 6pm and that it would be too cold and too late to go out then.  He then said “Oh okay, I’ll go out now, but it’s nicer to be out there with someone, and I didn’t want to ask you”, then he added “Well, not because I don’t want you with me; but because I don’t want you to have more hurt from the cold”

I cried inside when he said that. It’s times like that, that I really just hate myself for having fibro; and I hate that I didn’t push harder to have another child (which can also be blamed on fibro). FIBRO SUCKS!!

I told him that I would be okay and I went outside with him (I lied).

When Leon saw the neighbors having a play date with each other across the street he asked if we could invite them over to our yard. I said yes of course but I was sure they would say no. Not because they are mean kids or anything remotely like that, quite the opposite. But because, aside from the fact that they already had their own fort well under way, I think they know Leon well enough to know that he has his own way of doing things and often has his own agenda and doesn’t always compromise so well.

Leon took it in stride and just asked me to call another neighbor, which I did just to appease him, knowing they would decline too. For no other reason than they are girls after my own heart – they do not like snow. Again Leon took it in stride, and asked me to call a classmate, and then someone else, and then someone else, down the line.  You see, Leon does better one on one, rather than in a group and even then sometimes he isn’t necessarily looking for one particular person to play with; he just wants another warm body around.  –That’s a little sad don’t you think? How do I fix that???

I know a few of his classmates that I could have called, that would probably have come by, but the truth is I really didn’t want a play date at our house. I was feeling lousy and I suffer from CHAOS (Can’t Have Anyone Over Syndrome) because I can’t pull myself together to clean up around here. I didn’t want to see anyone, I didn’t want to talk to anyone, and I certainly didn’t want to have to change out of my snuggle pajamas and give up my blanket with sleeves. Having the neighborhood kids over is one thing because once they were done playing outside, I could just send them back across the street. But having a classmate who needs to be driven over, in tales a bit more work and planning. I just was not up for it.

Leon hates to be alone; he always needs someone in the room with him. He would rather read a book in the same room with someone rather than play with his toys alone in his room. The closest we get to him playing in his room on his own is if we are in the adjacent computer room; and even then, he will move whatever it is he is playing with into the doorway so he can be nearer.

I felt bad for him; even though I knew he was fine out there on his own. But the mommy-guilt got the better of me.

So there I was shoveling snow into huge piles for him to make a fort out of, fully equipped with snow slide. The snow was very heavy and there was tons of it. It was definitely my dumb-ass move of the week given how bad of a Fibro-flare I am having, especially when considering the fact that it is the snowy weather that is triggering this never-ending flare-up. Today I am paying for it big time!!!

It was a mistake, one that I knew I was making at the time I was making it.

So why do it?

This is why……

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The things we do for our kids!

Last Night’s Storm

The storm went all night long. I didn’t even have to see it, to know it was there. I could feel it in my bones. And my bones, they were a hurtin’

I received the 6am wake-up call from the School District letting me know there would be “No School, Due To Inclement Weather”. Oh Joy, a Snow Day.

That by the way, was sarcasm.

My thoughts went to all the reason’s why I hate the snow.

When I finally got out of bed to survey the damage,

…all I saw was beauty.

Here are the pictures:

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HAPPY New Year!?!???

Well, I had to say it, didn’t I? This is after all my first post of 2011.

Thing is I’m not feeling’ so Happy New Yearish at the moment. It’s part of why it’s taken me this long to post something. It’s not that there haven’t been any happy occasions, events, or news to post about; there have actually, and I want to share them, especially because some very good things have been happening with Leon; it’s just that, well, I am just too damn tired (and in pain) to even think clearly. And not the I just have so much to do tired either. It’s more like the, just walking from the couch to the bathroom and back has me feeling like all my energy just drained out of me and I can’t move, type of tired.

There is no doubt about it; this winter is really messing with my fibro BIG TIME. Mother Nature and Jack Frost have teamed up to kick my butt!

Here is today’s forecast from the National Weather Center:

Winter Storm Warning

  • Statement as of 9:52 PM EST on January 26, 2011
    … Winter Storm Warning remains in effect until 6 am EST
    Thursday…A Winter Storm Warning remains in effect until 6 am EST Thursday.

* Locations… portions of northeast New Jersey… New York City
and southern Long Island.

* Hazards… heavy snow.

* Accumulations… 8 to 14 inches of snow… with locally higher
amounts possible.

* Winds… north winds of 10 to 20 mph with gusts up to 30 mph are
expected across New York City and northeast New Jersey.

* Timing… a wintry mix of snow… sleet… and freezing rain…
becoming a moderate to heavy snow this evening… and a heavy
snow overnight. Up to a quarter of an inch of ice this evening.

Special Weather Statement

    • Statement as of 1:13 am EST on January 27, 2011
      … Heavy snow will impact Bergen… Bronx… Essex… Fairfield…
      Hudson… Kings (Brooklyn)… Middlesex… Nassau… New Haven… New York
      (Manhattan)… Passaic… Queens… Richmond (Staten Island)…
      Rockland… Suffolk… Union… Westchester and western New London
      counties…At 1257 am EST… National Weather Service Doppler radar was tracking
      a wide band of heavy snow extending from northern Connecticut
      through Long Island and New York City.

Snowfall rates within this band are between 2 to 3 inches per
hour… but could be as high as 4 inches per hour in the heaviest
portions of the band in Nassau… western Suffolk… New Haven and
Middlesex counties.

In addition… gusty winds between 20 and 30 mph with occasional
gusts up to 35 mph will occur causing blowing and drifting
snow….and reducing visibilities to 1/2 mile or less.

Motorists should exercise extreme caution.

A Winter Storm Warning remains in effect for the area.

We’ve already had so many storms so far this New Year that I’ve lost count at this point and it’s only January.  These storms have been so frequent and so on top of each other, the effects of which are unbearable. It’s times like this that I am most aware of my Fibro …obviously!

Last week a friend got an up-close peak into my life with Fibro, when she stopped by to invite Leon and me over and found me curled up in a ball on the couch, with my head resting in Ron’s lap as I wept because the pain was that intense. I think it really took her by surprise. This invisible disability suddenly became visible.  Being the wonderful friend that she is, she took Leon so I didn’t have to worry about him seeing me like that.

I actually felt a bit embarrassed that she had seen me like that.

I know I should not be embarrassed by the situation but it is very rare for someone to see me with that bad of a flare-up, and in that much pain, and THAT vulnerable.

Not that I haven’t had flare-ups before in front of people. It’s just that, well, it isn’t always so blatant. The pain is always there alright, and occasionally someone will comment or make a joke about me walking like a crumpled up old women before I can straighten myself up, but usually it will go unnoticed. But Friday’s flare-up, that was something all together different that was what I usually refer to as a “lost in the pain” flare-up. One that gets so bad that I feel completely lost and consumed in the pain.

And with this icy cold, snowy, storm-filled winter I feel like it is freezing me in time and incapacitating me to the point that I cannot even function in my own life right now. I have been out of commission since this year began.  As a result not only am I suffering but so is my family.

The all over joint pain, headaches, fatigue (serious fatigue), insomnia, and muscle weakness keep me from being able to do normal everyday things, including taking care of my family. The burden then falls on Ron; my dear and wonderful husband. So now his life has been turned upside down too.

Not only does Ron leave the house to work all day, but when he is home he has to take care of the things I can’t.

Much to my dismay and intense gratitude he gets up early with Leon every morning without waking me up. He knows that mornings have always been difficult for me, but right now they are even more so. My insomnia has kept me up till anywhere between 3am and 5am on a regular basis. I am thankful because waking up every morning at 7am and functioning on all cylinders is practically unheard of.  I just wish I could do more in the mornings so Ron could get ready for work stress free.

Ron has to get himself and Leon ready at a time when Leon’s ADHD is at its worst. There always tends to be a battle whether it is about taking a shower, eating his, breakfast or getting dressed for school. I usually wake up to one or the other’s yelling or a phone call telling me, my sister is on her way with my niece, whom I care for while my sister is at work. Although, too often this year I’ve had to send her to my mom’s instead.

As it is I am no longer caring for Nico (my friend’s son), but now my fibro is forcing me to give up more days with Kiera too, making money even scarcer.

While taking care of Kiera can be extremely draining, I at least can nap when I need to, while she does. I just can’t see that being included as a benefit in a real job 😉 , so while money is scarce, I am lucky that my sister needs my help. The major downside then falls to Leon and Ron again.

Generally while caring for Kiera or any child, one would think I could keep up with the house work since I am home anyway. Unfortunately that just isn’t always the case, and right now because of the intensity of my flare -up and especially because of how long it has been lasting, there just isn’t any relief long enough for me to catch up on my housefrau duties. It’s embarrassing!

What is worse, is that rather than let it all pile up, Ron jumps in and picks up the slack. It makes me feel so guilty, because I can see it is taking a toll on him.  The getting up with Leon, and battling him to get ready for school while preparing his breakfast and packing up his lunch, and sticking him on the bus; then he has his job to contend with; only to come home and have to contend with me, who is thoroughly exhausted and mostly immobile from the pain and Leon whose meds have worn off and is talking a mile a minute, bouncing off the furniture, and vary needy at this time of the day.

On my normal days, flare-up or not I would have at least pushed myself  to clean up after the day’s activities, get the dishes done, have Leon’s homework done, fed him and ready for bed by the time Ron got home so that he could at least enjoy himself with their ‘Daddy and Leon bedtime routine’. I’ll be honest, I rarely get all of that done, especially during flare-ups, but I do my very best and depending on the severity of the day I have gotten quite a bit of it done. But right now it’s as if my tush has been glued to either the couch or my bed. Basically I’ve been bedridden (or couch-ridden as it were) since the year began, and if the weather keeps up this way I don’t see it getting any better anytime soon.

I worry about the strain it puts on Ron. Add to that the struggles we face financially at the beginning of each year because of how our medical insurance is structured. Between Leon’s ADHD/ODD meds and my Fibro /ADD meds and our regular doctor visits, we have to come up with a lot of cash in a very short amount of time because we have a $2500.00 deductable to meet. That’s not an easy thing to do when living paycheck to paycheck. This is the time of year when our bills pile up. So on top of the strain my fibro puts on Ron he has this to deal with. Now add to it the fact that Ron’s car has died and can no longer be driven, so he has to use my van until we can afford a new car. At least with me pretty much being bed-ridden I can do without the van for now.

The guilt and the depression that comes with it weigh very heavily on me. I feel responsible for Ron’s stress, and I worry about his health.

So with all that, it hasn’t felt very Happy New Yearish   ….yet

As I said before there have been a few highlights to the year so far, involving Leon, so not all is lost.

But that will have to wait for another day.

HAPPY NEW YEAR!!

What Do Teachers Make…

Great poem about What Teachers Make by Taylor Mali

Thank you to all those teachers out there who make a difference!!

Yipee Skipee it’s Halloween!

I love Halloween! It ties with Christmas as my favorite holidays..

Both are fun and festive! Christmas lets me get my shopping on and Halloween lets me get my costume on.

Last weekend we enjoyed yet another Halloween Celebration. I say another, because this year is no different from any other year, where we attend many different Halloweenie events.

Traditionally Leon gets to go trick-or-treating at least 3 times each year.  First Leon starts his candy collecting in PA at Ron’s parent’s summer retreat, a campsite on the Delaware river, that they have been seasonal members of since Ron was Leon’s age, that hosts a costume parade, trick or treating, and a Halloween party at the close of the season in the end of September. His second T.o.T. collecting is usually at Pumpkin Park, a local amusement park that opens itself up for safe trick or treating every year, however there was scheduling conflict and we did not get to go this year. And lastly we always enjoy having a few friends meet up at our home for a light snack before we roam the neighborhood on Oct. 31, forcing our kids to collect candy for our – umm I mean their enjoyment. 

This year we have a packed Halloween schedule once again. In September, we had fun at the campground as usual. Leon wore a grim reaper sort of costume because as much as he wanted to be Emperor Palpatin from Star Wars, I knew the make-up involved in it would try his patience and his sensory issues. So I nixed it for the campground. He enjoyed himself none the less.

He’s the one all in black

Two weeks ago we went upstate to enjoy the fall scenery and do some apple picking as described in my previous post.

The 3 of us collected twigs, acorns, and leaves and put them together; and Leon snapped this photo.

Last weekend I spent Friday and Saturday putting our costumes together. I’ve always enjoyed making costumes and dressing up in either couples costumes or coordinated family costumes, and luckily Ron and Leon enjoy it too. Our theme is usually determined by what Leon chooses to be and then we work around that.

Being HUGE fans of Tim Burton’s Nightmare Before Christmas, it was only natural that we would portray characters from the movie. I am the Lovely Sally, Ron is Jack Skellington the Pumpkin King, and Leon of course is Oogie Boogie.

Putting costumes together for Jack and Sally was simple enough. Ron’s was completely store-bought and in the interest of saving money, (along with having an excuse to wear my leather corset) mine was put together from pieces of clothing that I already own (with the exception of the wig which I borrowed). Leon’s costume of the other hand was something entirely different. Oogie Boogie is not a readily available costume, in other words it had to be made. And Leon was very specific about it looking true to character.

I spent four hours creating Oogie’s head on Friday and about five hours creating his boogie, I mean body on Saturday. It turned out truly amazing if I do say so myself, I am quite pleased with the result!!!

You’re joking, you’re joking,
I can’t believe my eyes”

Mr. Oogie Boogie, Nightmare Before Christmas

We wore our costumes to a friend’s Halloween party Saturday evening and had a blast! Leon’s favorite part was getting to watch Nightmare Before Christmas and Scooby Doo with the other kids. My favorite part was the look of surprise on people’s faces when they found out Oogie Boogie was not store-bought. Well, that and getting together with friends.

On Sunday, Ron’s parents joined us at a street fair. We went in costume to participate in a costume parade and enjoy the farmers market and a wonderful musical group, The Bari Koral Family Rock Band. They were terrific but we had to leave early, Leon was having an off day due to the previous night’s activities.

Ron, Leon, my niece Kiera, and myself

You will notice that I did not go as Sally in the pictures; instead I was an eco-friendly witch. I felt that it was more appropriate daytime attire, and it gave me an excuse to wear my green dress that just happened to match my green witches hat that I had received as a gift from my sister a year or so ago. Hmmm.. Do you think she was trying to tell me something?

This whole week continued to be about Halloween festivities for us. Leon’s school hosted a pumpkin patch for the students during recreation time on Wednesday. He was happy to come home with a pumpkin, a pint of apple cider, and some candy corn. We decorated the pumpkin when he got home from school

It’s Not So Spooky Snoopy!

On Friday, Leon went to school in costume, as did the majority of the other students in his school. The principle, whom I adore as y’all know; led a costume parade in front of the school, and invited the parents to come and watch.

Jedi Leon

It was just so adorable to see them all dressed up and enjoying themselves. Our principle by the way dressed as Sponge Bob, which I thought was great. So did the kids, they just love her! Leon was excited to come home with his “crabby patty” prize for scariest costume. Funny enough, Leon did not wear his Oogie Boogie costume.  The student’s were not allowed to wear masks, so he donned a previous year’s costume, Jedi Luke Skywalker. Which, isn’t a scary costume, however, knowing my SPD son and his issues with clothing, I allowed him to wear a pair of skeleton pajamas as a costume underneath his Jedi costume, in case all that extra fabric was too much for him. So he went to school and marched in the parade as a Jedi; but by the time the principle got to his classroom afterwards he had stripped done to his bones, won scariest costume, and came home as a skeleton.

That same evening the PTA hosted a Fall Harvest Costume Dance. We  really, really wanted to show off the Oogie Boogie costume, and even though masks were not permitted, I allowed Leon to walk in as Oogie, knowing that my extremely hyper-active, run wild as soon as he hears music, ADHD child would take it off within 10 minutes of getting there. I was right, of course, and Leon spent the rest of the evening as a break-dancing skeleton. Which is quite funny to watch! Ron and I attended in costume as well. Ron as Jack, and I as the Green Witch, once more – I figured my leather corset would raise more than a few eyebrows in a school setting.

Conga!

CIt was very nice to see some of the other parents wearing costumes as well! My favorite adult costume was the Sleestak! As for the kids, the home-made Sally was great, as was the Mini Mad Hatter, the Peacock, and my favorite Little Witch in Training (just because she is the sweetest little girl).

Sleestak and Jack rev up the dance floor

The funniest part of the evening was when the DJ called the Sleestak and Beetle Juice over to help lead a dance. Funny because, he was pointing at Ron (aka Jack Skellington) when he said Beetle Juice.

You could not see his face under that mask but I am sure Ron was cringing every time the DJ (who was really great with the kids) said Beetle juice, which he said a lot. At one point Beetle juice, I mean Jack; I mean RON was asked to lead the conga line.

Conga, conga!

 I am very lucky to have a husband who is such a good sport (and doesn’t mind working up a sweat! – that is a rubber mask he was wearing). I think he really enjoyed it too, the notoriety, not the sweating.

On Saturday, Leon and Ron started their day early. Aside from Leon’s first Drawing class, they went to the Boy Scout Jamboree for the day, which being scheduled for Halloween weekend had to of course include a Halloween parade. Unfortunately they missed the parade, but they enjoyed the day none the less.

Happy Birthday BSA!!

When they returned, we got ready for a party at the haunted house across the street. Our friends (who are also our neighbors) go all out on Halloween. The outside of their r home gets totally transformed a week or two before Halloween, and is ever-changing. The house draws a lot of on lookers. This year the theme was a Cannibal Cafe and aside from the typical masked persons scaring the bejeebers out of passerbyers, including one who chases them down the street wielding a real chainsaw (sans blade); they added a new character to the mix. The zombie chef was working up his magic for the crowd, offering up; grilled upper intestines (because the lower ones taste like crap), liver and fava beans, fried fingers, leg of Sam, eyeballs, s.o.s. (shit on a shingle), and “The Exorcist” special. He was a crowd pleaser for sure.

The Spooky House day & night

(click pictures to enlarge)

Sunday, Halloween; was a very long day for sure. We spent the morning preparing for a Pre-Trick-or-Treat Get Together at our home. I planned games for the kids to play for prizes, including the ever popular mummy-wrap game which was a ball. The kids enjoyed a few crafts, some games, some chicken nuggets and cupcakes, and spending time with each other, at about 3ish we set out on our merry way, around the neighborhood. Keeping up with the kids was a task and a half. We managed to hit quite a few houses, some of them more than once, before we made it back.

Trick or Treat!

(click pictures to enlarge)

We had been invited back to the “cafe” across the street to enjoy yet another party because this year they decided to host a party on both nights of Halloween weekend, rather than just their usual one party on Halloween night.

Par-tay!

The second night was by far more crowded and busier than the first night, with both the invited guests and the passing onlookers. The live entertainment was a huge draw. Even Ron got in on it as kids high-fived him and asked to take pictures with him.

Ron enjoying the spotlight

And now I get to suffer the Day After  Halloween Hangover….

                                                                  ….that’s okay I got the cure

CANDY!

I will not play with fire…I will not play with fire…I will no…

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Hoo Boy!! My worst fear is Leon becoming extra ordinarily attracted to fire! It satisfies the need for instant gratification and shows lack of impulse control. Fire is highly attractive to many with ADHD, like a moth to a flame, and just as dangerous.

Last night our little moth got caught up in the flame.

It was my fault completely and I take the blame and the shame that comes with it. I feel like a terrible, terrible mom for letting my guard down, especially since I should have known better.

I had received a beautiful candle from a good friend on Halloween, and I wanted to enjoy it. Being that Leon was contentedly occupied on his computer, I felt it was safe to light it in the living room, after all he was two whole rooms away. My huge mistake was not listening to my first instinct to blowing it out as soon as he went into the livingroom to watch TV. I had planned on doing just that, but he stopped me and very sweetly asked that I leave it on, because he liked the way it made the room feel. He asked me to trust him.

Ah, TRUST. My very mature nearly eight year old child wants me to trust him, I want to trust him, but not only is he a child but he is a child with ADHD. That is a hard one. I believe strongly in letting him develop his independence, so when he asks me to trust him, I want to show him that I believe in him, I want him to feel trusted. But because of his inability to control his impulses without the right parameters in place. Trust is not and should not be doled out unconditionally. Additionally trust is something that is earned and must be maintained. I believe that Leon’s ADHD adds a bit of difficulty to doing that.

He asked me to trust him. Had he earned that trust? The answer is yes. Had he maintained that trust thus far? Still yes. Had I made a huge error in going against my natural instinct to be extremely and overly cautious about trusting him with something like fire in the first place? That is a BIG HELL YEAH!

I let my guard down, that is not to excuse it though, I still own that the mistake was mine.

You see Leon is a very bright boy, he retains information extremely well. Once something has been taught to him, you can be sure he knows it!! But despite that fact, or the fact that he has been to numerous fire safety exhibits, or that he has been taught how to build and maintain a campfire properly and safely in Cub Scouts, as well as by his Dad and Grandpa; I for one have never been comfortable with the idea of a child; let alone my child, my ADHD child at that,  near a flame; campfire, candle, or otherwise. I know that any parent, or non-parent for that matter would feel the same. But the fact that I had to go through life without my father due to a fire, makes me just that much more hyper sensitive to this issue.

Leon has been around quite a few fires in his lifetime, at the campground and with the Cub Scouts. I have seen him get awfully close, but not because he was being careless (quite the opposite really), but because he was given permission too. Not by me, well not at first anyway, but by his Dad (or Grandpa) who felt more strongly that he could be trusted because he had learned all the right things to do as well as what not to do. And because they were watching him carefully. Something that I have just learned is not enough.

Despite my heart beating a mile a minute and my holding my breath every time Leon even neared a campfire; I myself began to let my guard down and trust him as the others did. In fact I even felt a bit of pride at how well he handled himself around fire and at how much he knew about fire safety and prevention.

It was that pride and a small sense of security in knowing that my son knew how dangerous fire has the potential of being, that allowed me to drop my guard and trust him when he asked me to leave the candle on.

Stupid, stupid, stupid!! What the hell was I thinking??? Seriously, I freak out when I find matches or other fire starter within his reach, but I agree to leave an open flame lit with him in the same room? WTF??

I agreed because, before doing so we went over the rules of fire safety, I could watch him and the flame from where I was sitting, and he was clearly advised that he would have to sit on the couch and not go anywhere near it!! I agreed because I hadn’t taken into account that it was already 7pm and his medication had already worn off. I agreed because I let my guard down.

HE HAS ADHD, DAMN IT! NEVER, NEVER LET YOUR GUARD DOWN!!

The result was not disastrous by any means, but it was very scary for all of us. One minute I had looked over to where he was and where the candle was and all was peaceful and the next minute I looked up and the whole candle jar was on fire. I ran over and once I had realized what had happened, I snapped. I started to yell and scream, demanding to know what he did (knowing full well what he had done) while trying to put the fire out in a panic. Ron ran into the room and managed to get it out.

Leon’s immediate response was to deny, deny, deny. To which i called him a liar. Ron put his hand on my shoulder to calm me and it worked. I then calmly told Leon that we were leaving the room for 5 minutes to let him think and when we returned he had better be prepared to tell the truth.

The Truth? He threw a kleenex on top of the flame to make it a little bit bigger.

His immediate consequence was to go to bed early, we told him that we would have to think of a pretty big consequence to match the seriousness of his actions and that we would discuss it in the morning. Before he left for bed he drew a picture of all his favorite things with a circle around them and a line diagonally across and handed it to me. He said “I really don’t want you to, but I think you should take away my favorite things for like a month or maybe 2 weeks”. We told him our decision would be made by morning.

This morning Ron and I informed him that his punishment included No Computer, No Wii, & No DS for 1 week, additionally he was required to complete a different written assignment on each day of his punishment, (today he wrote “I will not play with fire 10 times) and lastly his he has to go to bed 1/2 an hour earlier every night for 1 week.

We turned his drawing into a poster as a reminder. It is the one pictured below. We then got into the car and drove to the local Fire Station and he had a talk with one of the firemen there. I really hope this will make an impact on him. Leon suggested that tomorrow his written assignment should include making a map of our house and developing an emergency escape plan.

I am still very worried. I have been ever since the psychologist who evaluated him told me to be cautious and watch for signs of pyromania as he gets older, as it is common among kids with ADHD as severe as his is.

WHY DID I EVER LET MY GUARD DOWN?????

I now understand why my mom beat the living daylights out of me with a yard stick when I was caught playing with fire!

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11/10/10 EDITED TO ADD: Just to add some clarity to why I am/was so hard on myself and so stricken by this situation  (and to explain why my mom beat the crap out of me); – a few months before my 3rd birthday and just two weeks before my sister was born (2 months prematurely); my father died of smoke inhalation in a fire. The fire ignited after he had fallen asleep in his bed with a lit cigarette, and he was trapped in the apartment, and the smoke got to him before the firemen could.

  FIRE SAFETY IS A BIG DEAL TO US!

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