Chaos Chronicled!

I love my job.  Do you think if I say it enough I will start to believe it?  I thought accounting was what I wanted to do with my life as a career.  For the last 10 years, I’ve been working in accounting in some form.  The stress of deadlines (which seem to keep moving in closer and closer month to month), the missing out on things because I have to work overtime is getting to me. 

I should be thrilled to even have a well paying job with a stable (and surprisingly growing) company, and to some extent, I am.  It’s the line of work that is getting to me.  I’ve missed out on weekends away with family in friends at year end, I’ve missed dance lessons, soccer games, hockey games, skating lessons, all in the name of some looming deadline for I job I USED to love, but not anymore.

So, what do I want to do in it’s place?  Well, given that my son has special needs, I’ve been taking an interest in learning more about the types of workers he works with.  It requires patience, which I have in short supply.  Human Resources, Payroll (again, tight deadlines - maybe stay away?)

I’ve always wanted to be a writer, but I have no idea how to kick start my imagination, maybe a course in writing?  I could set my own hours and work when/how long I choose.  Hmmm, that’s an idea. 

Ever since we lost Avery (a friends daughter) to cancer, I’ve thought about opening up a charitable organization to help parents with the many expenses they incur while a child is in the hospital receiving treatment.  I haven’t the first clue how or where to start that, nor do I have a tonne of my own money to start it off. (If I did, I would give it all to these families)

 So I guess I do have a few ideas, I just need to explore them some more, when I’m ready to grow up, LOL!!

I just don’t understand this system.  My son requires speech therapy.  He’s been getting it through a local agency.  We were informed last week that at the end of this month he will no longer be qualified for continued therapy, although he still requires it.

In effect, he is aged out of the system.  His age is what determines the amount of therapy he requires.  Not his speech, not his need, his age.  This is not right.  This is not fair, to him.  How can his age, the magic # of 4 1/2 determine his qualifications?  The child clearly needs to continue his therapy, the issue that required therapy has not been resolved.  I do not understand!!

We essentially have two options - private therapy or wait until October and the school system *MAY* provide some therapy, but not at the level he’s getting now, and it would be a program done at home by us.  Last time I checked, I did not hold a certificate stating that I was a registered speech therapist, nor did my husband.  I have no problems helping and working with the therapist with some work at home, but an entire program done at home, without the assistance of a speech therapist?? 

Private therapy is costly, and while I would love to put him in it, I simply cannot afford it.  With hubby in school full time, and me the only one working,  ends barely meet.  Adding an additional $400 a month for speech therapy is simply impossible.  Most places do things based on income, and last year we made a decent living, until my husband lost his job.  Heck, daycare for my son who won’t start school until September and our rent alone take up 60% of what I bring home each month. 

This is not right, and not fair, and I’m just plain angry and frustrated for my son! 

I have two beautiful (if a little challenging) children whom I adore.  Each day spent with them is a blessing.  Nine years ago, if someone had told me that I would have everything I have now, I would have burst into tears and asked them why they are taunting me. 

I was told in October 99 that I would likely never be able to conceive on my own.  I would require at the very least some form of medical intervention.  We were determined, we researched, we presented the specialist with our findings, and she chose to turn a deaf ear to them.  Our wonderful family physician supported us where the specialist failed.  She took our findings, did her own research on them, agreed with what we wanted to do, and off we went.  The first positive step that would eventually bring us to where we are today.

My husband is satisfied with the size of our family.  We have one daughter and one son.  The million dollar family.  Once upon a time I thought I could be satisfied with that.  In reality, I am not.  Everytime I see a baby, I feel that pull.  That need, that want to hold that little tiny bundle.  I don’t feel like our family is complete.

Then I sit down and I think about all the things I want to be able to do with my children.  Disney Land, activities, camping, travelling, University.  If we had one more, would we be able to do all those things?  Will things have to wait, maybe be scrapped completely.  Is that fair to my daughter and son?  Is it fair to my husband?

So I feel pulled, in two separate directions.  I’m not sure which direction I would like to go.  I have days where I think I have it all figured out.  Days when I think that what I’ve decided is final, and then something changes.  I’m not sure why or what changes.  Perhaps if by saying our family is complete, I will have to grieve for that child that will never be, and I just can’t seem to do that yet.  Perhaps it the fear that if we did decide to have one more, we will be disappointed and will not be able to get pregnant.  The issues that made it difficult to great pregnant have not disappeared, and the issues get worse with each passing year.  The waiting, the hoping, the disappointment, the worry, all emotions we experienced intensely during the years we attempted to get pregnant. 

Our son has some special needs.  Would those needs go unmet if we had another child?  Would we be able to handle both his special concerns and a new baby?  How would my daughter feel about another sibling?  It seems every time I try to come up with some kind of an answer, I end up with more questions than answers.   Will more soul searching really tell me what I need to know?

I  feel as tho I need to pick a direction, and go.  I’m just not able to take that step.  I feel as tho I am walking in circles.

For once, I wish the answer was there, clear, concise and simple.

So, I’ve known for a while now that my oldest is having trouble in school.  Her reading is behind about 1 level, her writing is awful, difficult to decipher and lacks focus, and math seems to be hit or miss.  I attributed some of this to her age.  She is 7 yrs old, and in the second grade.  She is a December 29th baby, so when she started school in JK, she was just 3 yrs old.  Historically, I’ve seen her grades improve steadily over the year, and until this year, I thought she ended to year on par with the kids in her class.

The teacher she has seems to feel that she is not progressing as rapidly as she would like.  Brief testing indicated that she was at a grade one level.  Now, had I held her back and put her in school one year later, she would be right about where she should be.  However, because she is in the second grade, she is expected to acheive at a second grade level.  Not unreasonable, really.  With some pushing from the teacher, the school will now be doing an educational assessment to determine where she is academically.

Now, I don’t disagree with this testing, I think it’s a wonderful idea.  However, I am concerned that they will want to hold her back, which would devastate her, and I’m afraid of what it will do to her self esteem.  So, with this in mind, I began searching for a tutor.  My first thought was those commercials you see on TV for Sylvan learning centre, and Oxford Learning Centre.  I’ve contacted both.  They do individual assessments (costing anywhere from 125-175 dollars) and then prepare and work based on those assessments.  They re-assess regularly, and insist they provide quality results.  I don’t doubt this claim.  Tutoring starts at around 47-48 dollars an hr and most kids go at least 2 hrs a week.  At 47 dollars an hour, twice a week, that’s 350/month.  Simply does not fit into our budget.  Local tutoring services want around 30 dollars an hour, that’s still 240 dollars a month.  Again, not going to fit in the budget.

So this leaves me wondering what to do?  I’ve already consented to the school doing the testing.  I’m worried that the work they start/do now will not be enough, and she will continue to fall behind.  Working with her at home doesn’t seem to be working, and I feel awful.  I cannot seem to provide to my child the additional help in schooling she requires.

Where do I go now?  What is next on the list??

I’m suffering today from a large case of mother guilt.  My son is sick, AGAIN.  I strongly suspect he has strep throat and as soon as the dr’s office opens (in the next 10 mins) I will be calling and seeing if they will see him today.  They are usually very good about this and will do their very best to see him today.  I feel terrible for the little fella.  He is very feverish, complaining his head and throat hurt, and all he wants is for me to hold him.  I wish I could make it all better with a hug and a kiss like I do when he falls down.  I wish I could stay home every day with him.  He’s getting so big, and growing up so quickly.  Circumstances dictate that for the next 3 yrs I must work full time while my husband gets some much needed re-training in the local college.  I enjoy working outside the home, but some days the guilt, the guilt of being away from my children, not being the one who answers to all their needs eats away at me.  Days like this, when one of them is sick are worse.  I feel so conflicted on days like this.  I hate that my co-workers have to pick up my slack.  I hate disappointing my boss, by being absent yet again.  I hate that I feel pulled in two totally different directions.  When it comes down to it, however, my child comes first.  No question about it.  Work will have to wait.

Of course, then sitting in the back of my mind is what if they decide to let me go?  What good is an employee who is absent frequently?  How can that one person contribute to the teams efforts.  If they were to decide to let me go, then we are so screwed!  My paycheque provides the roof over our heads and the food in our stomachs.  Finding a new job in this economy would be hard to do.  I’m not likely to get the greatest reference either.  I know, I know, don’t borrow trouble, it hasn’t happened yet, and may or may not happen.  Deep breaths, calming breaths.

 Whoops, a poor sick little fella is awake, and needs me again.  I must be done now 

I don’t know that I’ve mentioned a great deal about some of the issues facing my four year old son.  How can I describe them, when I’m still learning how to?  To start with, he has a minor speech delay.  He does not make the correct sounds for some letters.  This makes him hard to understand.  He also tends to mumble or speak quietly, which makes it worse. 

When you don’t understand what he is saying, you can’t get what he is asking for or help him.  This triggers his next issue, temper tantrums.  They’ve improve a great deal, but they still exist and when he starts, he can go on and on and on.  The more he goes, the worse, more destructive, more annoying it gets.

He is not your typical boy.  He doesn’t roughouse, doesn’t grub around in the dirt, and so on.  He plays by himself  with his few select toys.  He has brought friends home, but plays along side them rather than with them.  So taking him places where there are alot of kids is hard.  He can’t communicate well with them, they pick on him, or exclude or ignore him, and then we start the cycle of temper tantrums again.

He’s a very bright boy, who seems to have a great deal of anxiety, and a need for order.  We are in the process of getting some assessments which will give us a diagnosis and will help us help him.  We’ve had to fight hard to get them as on your first view/observation you would think he is a typical (if maybe a slightly high strung) child.  For this reason he gets left behind.  He is not a needy child, but he does have some special needs.  People don’t get this. 

I guess I’m writing about bunch of things that all relate to this.  Some times I think my spouse would rather not have a child with special needs.  He has a ‘he is a typical child” attitude.  Don’t get me wrong, in some ways this is good.  He gets treated just like his older sister, and has expectations appropriate for his age.  That being said, when he is unable to meet those expectations, there is anger, and resentment and disappointment.  I don’t think hubby should have to expect less, but I think sometimes he needs to understand that it may take longer to get there than he thinks it should.  In a nutshell, we suspect and Generalized Anxiety Disorder and likely an Autism Spectrum Disorder.

A lot of the stress and the emotional support falls on me.  Hubby is in school full time, and needs to do well, our family’s livelihood depends on it, so I guess I don’t share this well with him.  I don’t want to distract him.  That being said, sometimes I think he expects me to deal with everything and sometimes I simply just cannot.  Friends and family just don’t get what it takes to help our son.  I work full time, I come home and work another full time job being mother, housekeeper, teacher and therapist.  I’m tired at the end of the day.  I’m emotionally drained, I have nothing left for me.

Friends have stopped inviting me places, sending me emails, calling.  I don’t have the time (much as I wish I did) or the energy to join into the activity.  I usually also don’t have the money to go out for snacks, every penny is spent, there is not anything really to spare for these types of things.  All of them have 2 incomes (or one well paid, sufficient income) so they can do those things.  I feel inadequate most times, and certainly don’t think they truly understand what is going on with me.  I’m not even sure I could explain it.  I can’t seem to explain it to myself most times.

The feeling of being inadequate gets worse as time goes on.  The worse it gets, the more I withdrawl from my friends, the more I withdrawl, the less effort they extend (not really knowing the source how could I really expect them to, but the flip side of this is that if they truly were my friends, would they/could they not then reach out and ask what is happening?) the less effort they extend the more alone I begin to feel, and it snowballs on and on and on.  It gets to the point where the only things that I seem to have are my kids (whom I love more than anything) and my husband (who keeps me sane most days) and my job.  A lonely existance when you need someone to talk to.  I need someone to talk to who would understand where I am coming from.  I honestly don’t think or feel that any one of them is willing or able to seek me out and do this?  Am I wrong to think that a true friend would want to make sure I was doing ok?  Am I wrong to think that if a friend seemed to be slipping away that you should at least try and find out why/where they are slipping off too?  I’d like to think I would do this for them.  I thought I did when one starting going through the divorce process.  I called frequently to make sure she was ok, and to offer my shoulder or ear.  I offered suggestions when asked and sometimes said nothing at all while they vented their frustration because it seemed all they really wanted was someone to listen.  Do I expect too much?  I feel so isolated that I can’t bring myself to seek them out.  I’m on the outside, looking in.  I’m not sure they would answer the proverbial door if I knocked anymore.  Then comes the thought - your just stupid, making something out of nothing.  You are your own worst enemy and are causing yourself this grief.  Am I, I just don’t know.  I can’t sort it out, and I don’t even have an idea where to start……………….

Lost………………………………………………………………..

 How sad is it that I am writing all this in a blog not one real live person except myself is going to read?  How sad is it that the only place I feel safe enough to say any of this is on a page no one will read????  Incredibly sad, really

With things the way they are right now, I’m sure that my depression should have kicked into overtime right now.  It hasn’t, which is very good, but it makes me wonder when it will begin to kick in.

If it wasn’t for some help, there would be no Christmas for anyone in this house this year, and it breaks my heart.  The kids have been so good, and they deserve to have a good Christmas.  I’m very grateful for the help, and humbled by having to ask for it.  I filled up the car today, and now we have less than 100 dollars which has to last until then end of the month.  I’m sure it will, as we will not be at home for several days with visiting family and all.  This is getting close to the wire for us.  Thank goodness hubby’s OSAP is coming, to help us get back on track and get things going again.  Things should work out well if we are very careful.  I hope that with the hard economics forecasted for the future, I have to wonder if things will improve or get worse. 

In some respects, we have some stability.  I know hubby’s not employed, so waiting to find out if he is losing his job is done.  Since his course is a three year course, we know what he is doing for the next little while.  My concern has now shifted to my employment.  With the possible deployment of a new commissions system, it brings up the question of whether or not our department will need to keep it’s current staffing level.  If not, who will go?  Am I expendable, well, I’m most certainly not key to the entire operation, so I guess that makes me very expendable.  I am not the newest employee, but I’m one of the least educated ones, which means it may be harder to convince anyone to keep me.  Re-Education is in the plans once hubby is done, but this is the future plans.  I worry about this, and think about it constantly.

I’m looking forward to Christmas for the kids, and hope that they will not notice that this Christmas is not quite as bountiful as usual.  If the weather co-operates, it should be interesting. 

 My thoughts are all jumbled today and taking many turns.  This does not make for good blogging, so I’m going to end it for now and come back when I have more organization behind them!

As we struggle through the first semester of school, I sit here and wonder.  I wonder what the future holds for us.  I wonder if my husband will get the job he is hoping for when he is done school.  I wonder if that means we’ll have to move.  I wonder if he’ll get a decent wage.

One of the things I wonder a great deal about is having another child.  We have 2, and they are wonderful.  My daughter is smart, loving, friendly and so far seems the have lots of friends.  She is 6 going on 7 (some days I swear she is 6 going on 16) and I hope that she continues to make friends and have friends with the ease she appears to possess now.  My childhood growing up holds few fond memories and not many friends. 

My son has his issues.  He has a speech delay, and we are currently in the process of having him test for Autism Spectrum Disorder.  While he takes up a great deal of my time and attention, I still find myself wanting to have another baby.

I wish it was a simple as that.  I have PCOS, and that means that getting pregnant is not as simple as saying lets have a baby.  I need to drop 40lbs, start back on Metformin and start tracking my cycles.  It took 3 yrs of trying to get pregnant to have my daughter and 14 mos to get pregnant with my son.  I love children, babies the most.  I’m turning 35 in a few weeks and now I have worries with my age.  We won’t even start trying until hubby is finishing schooling, which means I will be 37, so I worry about the effects of age.  I worry that my PCOS will be worse by then  I wonder how my kids will react, with such a large age difference between them.  My daughter has been begging us for the last 2 years to have a baby (sister only of course) and every time we see someone’s newborn she asks when we are going to have one.

The urge to have another baby hasn’t seem to have disappeared and I thought it would.  It seems to get stronger, not weaker.  I swear, holding a friends newborn made my ovaries contract, lol.  The smell, the look, the feeling, all of them, just tugged at me.  Is this normal?  Hubby really wouldn’t be unhappy if we stuck with the 2 kids we have, and some days, two seems to be a great deal of work.  But those days are few and far between, and seem to be quickly forgotten.

I need a crystal ball, to tell me what my future holds.  I’m far from patient, and not knowing drives me bonkers some days.  lol, what can I say, I’m a control freak some days. 

Ahhh well, guess I have not choice but to wait and see.

I hate to complain about my husband’s decision to go to school, I think he’s made a good, solid choice on a path that will pay off in the long run, but at this moment, I wonder what we are going to do.

A few weeks ago, the transmission went in the van.  It’s old, needs a tonne of work and in the end it was not worth putting the money into.  However, for him to go to school, and me to pick up the kids and drop off the kids, we need 2 vehicles, so we had to find a second one.  Against my better judgement, I gave into his hounding to buy the the neighbor’s car.  My only condition was the WE took it to OUR mechanic to have it safetied.  This guy is a mechanic and COULD have done an illegal safety cert, and I wanted to avoid that.  It’s not that he would, it’s just that the opportunity was there and what little I know about him is not all positive.  I thought by doing it this way, we would be protecting ourselves in the long run. 

So, as we are getting the car ready to be safetied, we notice it is leaking break fluid.  Hubby figures out what is causing it, and attempts to fix, but couldn’t.  It ended up going to the mechanic.  $708 dollars later, it is safetied.  Now it needs and Emissions test.  Hubby was assured by this guy that he did not foresee any reason that it would not pass the e-test.  Guess what, it failed.  To fix those issues, we are looking at another $500.  Money is short, and I can’t stretch it much further.  As it is, I have no idea how we are gonna get the kids any gifts for Christmas, let alone other family members.

So do the math, $1000 for car + $500 for breaks + $708 for repairs + $500 for more repair = 2,708, of which, $1200 remains outstanding.  When does this end.  Ive paid everything we had in saving out already for this car, but it’s still not enough.  It seems to never end.  What do I do?  Hubby says he can drop out of school and look for work, something he did for 6 months before school started with no luck.  What makes him think he’s going to find work now, when even more people have since lost their jobs.  He won’t qualify for EI again, things are just getting worse faster and faster.  We need help and I have no idea where to find it.  His parents won’t help, and asking would pretty much put an end to what little bit of a relationship they have with him, and I won’t suggest that.  Our kids would be the ones who would suffer the most with that result.  They adore their grandparents and their grandparents treat them well.  I won’t be responsible for ruining that relationship.  My parents are not able to help, and I just can’t see asking them knowing they are worried that my mother’s job may disappear.  She is the only one working.  My dad was laid off from his job after 33 yrs at a factory and at 57, with shoulder limitations he’s had no luck finding work.  He started his own business, but it just breaks even right now.  They just can’t help.  With only me working, and nobody wanting to loan anyone any money, we’d be considered too risky, so I don’t think there is any way we could get a loan, besides, no collateral.  I’m stressed, I’m scared and I’m lost with no where to go…………………………………………………………………………………………

This is about something that’s been on my mind for quite some time, and no matter what I end up doing, my mind wanders back to it.  I guess the best place to start is the beginning.

My son, who was two yrs old at the time was attending daycare full time.  The daycare was the same one my daughter attended.  When my daughter attended, another parent and I became pregnant with our second child around the same time.  The other parent had a son already and was expecting a daughter.  I had a daughter already and was expecting my son.  We shared the joys and pains of pregnancy in passing each day, Monday to Friday.  After my son was born, I pulled my daughter from daycare, so I didn’t get to see this parent for a long time.  Her daughter was born 18 days after I delivered my son.  When I entered my son into the daycare, her daughter was attending and the two children were in the same room.  She was a beautiful little girl and seemed so happy and carefree.  She was always smiling when you saw her.  Around the end of October, I noticed that she had been missing the last few times I picked up my son, thought it odd, but assumed she was probably ill and would be back the following week.

That next week there was a notice in the cubby when I picked up my son.  This little girl, we’ll just refer to her as A, had a canerous tumour in her abdomin, and was in a hospital receiving treatment.  I came home, sat down and cried.  A child the age of two should never have to do battle with something like this, but cancer pays no attention to age.  Can I even put into words how I felt for this family?  A should be fighting with her brother over what they are going to watch on TV, not in a hospital somewhere fighting for her life.

Having had a family member go through a similar thing, I arranged for donations to be made for the family to help with some of the expenses I knew they were going to have.  While I did this, A’s condition worsened.  I took the donations down to the hospital in December, and visited.  I walked into a room, full of tubes and machines.  A was in the ICU.  I walked into this room, and saw this precious little girl lying in this huge bed.  She was heavily sedated.  Her mother explained to me that she was sedated because she had a breathing tube to help her with her breathing.  The tumour was larger and was pressing on her organs, which in turn put pressure on her lungs.  When A was awake she would pull the tube out.  At that point she was receiving enough medication to put a 200lb man to sleep for 2 hrs, and this was done several times a day.  They had to steadily increase the dosage of medication to keep her sedated.  A;s mother also said that if she continued to need a tube for breathing, she would have to have surgery and they would cut a whole in her throat and insert a more permanent tube.  The one she had at that point was inserted through mouth, but the risk of infection was higher and it was not safe to have this method for the long term.  You may wonder why I mention this, but please, keep the fact that A would need to be intubated in the back of your mind, I promise, this piece of information is vital later.

Her mother encouraged me to go in and hold A’s hand an talk to her, which I did.  I honestly thought I wouldn’t be able to do that, but somewhere, I found the strength to do just that.  Maybe, someone gave me the strength, I’ll never know.  Her mother spoke to me about what had happened, what was happening now, and what would happen if A improved.  In our conversation, she spoke of the new child they were expecting.  She had found out she was pregnant just shortly before this all began.  A’s mother is a strong, strong woman.

She told me about how she spent her day.  She was at the hospital early each day, and would remain there until she was exhausted each night.  When I asked why she waited until she was exhausted to leave for the day, she told me so she didn’t have time to think.  If she crawled into bed and had time to think, then she wouldn’t be able to keep moving forward.  Some people might think this was a sign of weakness, but I think it’s a testament to her strength.  She did everything she needed to do, to make it through the to the next day, and the day after that, even if there may not be a next day.  The conversation brought me to a few realizations, one’s I had known deep down, but may have been taking for granted.  There is nothing more important in the life than my family.  Jobs will come and go, things can be replace when broken or lost, but my family is truely my world.  When I left the hospital, I sat in the car, and spent a good 20 mins bawling.  I don’t think I have cried like that in a long, long time.

A got better in the new year, and went on to spend Easter at home.  Later she was sent to a Children’s hospital, for more chemo, and a bone marrow transplant.  I beleive this occured some time in late May, early June.  I had taken my son out of daycare at this point, but kept in touch with the daycare regularly.  I should add in here that I was attempting to put together a fundraiser for the family and was in the process of finalizing things and preparing to sell the tickets to a show that would help the family.  It was to be in August, and if A was well enough by then, we may even be able to have her attend.  The bone marrow transplant was completed, and things were going well.

On June 27th, I got a call from the daycare, and the Supervisor sounded upset.  She choked out the awful news.  A had died.  She got an infection in the hole in the throat where she had be intubated shortly after the marrow transplant.  She had no immune system which is part of the transplant, and the marrow had not yet grafted.  There was little they could do to help her.  A died just 8 short weeks before her third birthday. 

Out of respect for the family, we cancelled the fundraiser.  I went to the visitation, and it was the hardest one I’ve ever been to.  The room was full of pictures, and life.  For someone so young, she touched so many - more than most have in their full adult lifetimes.

If there was one thing I could do in this life to help someone else, it would be setting up a charity, in A’s name that helped parents with the expenses they incurr when their child is receiving treatment.  A was an incredible little girl, her mother and extrordinary woman whose one wish was that every family should be able to focus solely on the well being of the child in need.  If every parent could focus on spending their time with their child, and not have to worry about things like the cost of staying near the hospital, or meals, or gas to drive from home to the hospital, perhaps things may just be a little bit better.

I don’t know the first thing about starting a charity, and fundraising for that charity.  I have no capital to start this charity as we have since fallen on hard times ourselves and have had to go down to one income, but someday, somehow, I will figure out how to do this, and perhaps, I will be able to honour A’s memory by helping others.  I think she would have liked that.

I wrote this for A :

A little angel up above, watches over those she loves.  She holds their love in heaven dear, knowing someday they will join her here.  No more tears from their eyes should fall, she’s home in heaven to answer HIS call.  The warmth of the sun, she sends her love, rays of warmth from heaven above.  Each day that passes, she eases their pain, waiting patiently to hold them again.