An Angel’s Island

Yep.  Indeed I have been cheating myself, for quite a while now actually.  Why is it that my writing takes the back burner to absolutely everything else in life?  Because I let it, that’s why.  And I should be ashamed of myself.  I love to write and I get so much from writing that I shouldn’t be letting a single day go by without writing but I do.  I let months and years go by without writing and then I go on a tangent.  I write and write until I feel like I can’t write anymore.  Anyway that’s just me and the way it goes.  No matter how much I promise I am going to write regularly, I let life get in the way.  So all I will say this time is we’ll see what happens.

So where to start?

The days and years are going by at warp speed.  My family is growing up.  Matthew just turned 15 (YIKES!) and Marcus is closer to 4 than he is to 3.  Unbelievable.  Mike and I celebrated our 20th wedding anniversary this summer and I made it to my 41st year.  Wow ~ just wow!  Wasn’t I just graduating from high school?

Matthew is growing into an exceptional young man who is counting the days until he is eligible to get his driver’s license.   *gulp*  He has “his” new car…oh, sorry I mean truck all picked out already.  I just can’t bear to burst his bubble quite yet.  One never knows, we may win the big bucks and it could happen.  I won’t hold my breath but stranger things have happened somewhere on this planet, I’m sure.

Marcus is, hhmmmmm quite indescribable.  He is so much his own person it’s hilarious.   He is so independent, so matter-of-fact and very set in his ways.  It’s a little scary some days.  Now that he really is developing is own personality I can see what many parents mean when they say that no 2 kids are alike; especially siblings.  Night and day doesn’t even come close to describing the differences between Matt and Moo.

One thing we have always tried not to do is compare our boys.  Sometimes it’s hard not to.  But really, when you think about it, it’s like comparing apples and oranges.  We do wonder though.  We wonder if Marcus is advanced in many ways or if Matthew was struggling more than we realized.  It’s so hard to know.  I don’t know what “typical” is because no 2 children are “typical”.  Marcus seems so far beyond where Matthew was at the same age in some areas (mainly cognitive and fine/gross motor skills) yet Matthew was verbally so far above other children in his age group.  Needless to say comparing the two does nothing but give me a headache so I soon turn my thoughts to other ideas.  I have concluded that they are who they are regardless of what my comparisons may state.

There is one way however, that our two boys are absolutely identical.  They are kind, sensitive, caring, polite, well-mannered and respectful.  How fortunate we are to be able to say that.  They aren’t angels by any means; they are human after all and as with anyone they have their moments.  But when push comes to shove I know our boys act responsibly and respectfully.  That makes me proud.  Even Marcus at 3 years old is able to display his knowledge of morals and values ~ now if we could only get sharing down pat we’d be laughing!

Time for me to get my thoughts in order and decide where we should go from here with An Angel’s Island.

Until next time…

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On this, the 9th birthday of our Angel, allow me to reprint her birth story.

The summer of 2002 started out like any other. Everyone was excited for a couple of reasons. #1 Matthew would be starting school in September, and #2 we were expecting our second child. We were in the process of selling our home and trying to find something bigger as the home we lived in only had 2 bedrooms and with a new baby on the way, we definitely needed something a bit bigger.

Our excitement would be short-lived. On July 12 I was scheduled for a routine 20 weeks ultrasound. My sister had missed so much of my first pregnancy as she was attending university away, I wanted her to come to the ultrasound with me. My pregnancy had been great, no morning sickness, no spotting, no need for concern. Of course, I went in myself initially and she could join us after the technician did all the measurements. Things seemed to be going well and then the technician became very quiet. She was focusing on a certain area and took many more pictures and measurements than I could remember having with Matthew. She told me she wanted to go get the radiologist to come and have a look at something and I asked her if everything was ok. She said she thought so and as she left to get the Doctor, I asked if my sister could please come in. I was getting a little nervous.

My sister came in and the radiologist entered and introduced herself to me. She was a younger woman and immediately I liked her. She was very up-front with me. She said, “Tracey, there is something here. Just give me a couple of minutes to have a look, ok?” Well, a couple of minutes turned into almost 45. My heart was pounding through my chest and I had to pee so bad I thought my bladder would rupture. I could see the screen. I could see my baby moving all over the place, what could possibly be wrong? I was getting a belly and I could feel movement for about 3 weeks now. I wasn’t sick. What could be wrong?

“The problem seems to be with the baby’s bowel.” The Doctor’s voice snapped me back from my thoughts. “It appears as though the bowel is located outside the abdomen.” WHAT??? That’s not right. That can’t be. A million things started going through my mind all at once. First and foremost was that my husband should be here with me for this, however, my sister is a nurse, she’ll know what to ask and she’ll be able to explain all of this to me. The Doctor suggested I get up and go to the washroom and then we could talk.

In the two minutes that I was in that washroom by myself I took a few deep breaths and decided that I was going to listen to what had to be said. Perhaps this wasn’t so bad. Her voice didn’t sound too “end-of-the-worldish”, so let’s just see where this is all going to go.

The condition is known as Gastroschisis, which is basically a hole in the abdominal wall. It is fixable. That’s all I needed to hear. Nothing else mattered – it is fixable. She wants me to go to the children’s hospital in Halifax (4 hours away) for further testing, though. No problem. She explained that the u/s equipment was better and more delicate in Halifax and it would show us exactly what we were dealing with. Again, no problem. She has an appointment for us on Tuesday (…this is Friday). She explained that when it came time for me to deliver, it would be at the Children’s Hospital in Halifax as the baby would require immediate surgery to fix the abdomen wall and reinsert the bowel. I remember her writing down the directions for us to get to the hospital and she told me that she lived close by and gave me her phone number in case we needed a break for a cup of tea or anything. (WOW! How nice was that?)

The one thing she did ask me to do was to please stay away from the internet for the weekend (I think my sister may have asked her to say this as my sister knew I would be researching this all weekend). She made me promise her that I would, and I did. By waiting until I got to Halifax to find out exactly what the issues were I wouldn’t have myself all worked up by reading information that may or may not pertain to my case at all. What I didn’t know couldn’t hurt me. This radiologist was wonderful and I couldn’t thank her enough. Now to go home and tell Mike.

We are not the type of people to sit and feel sorry for ourselves – it’s not going to change anything. We talked a lot on the weekend of possible scenarios that we may be faced with but decided that whatever would be would be and no amount of worrying on our part this weekend was going to change any of that. We enjoyed our weekend with Matthew, informed our families (and our family doctor) of what was happening and headed to Halifax Monday at noon time. We’d leave as soon as our appointment was finished on Tuesday. We’d be home to put Matthew to bed on Tuesday night.

This was the first time we had any dealings with the Children’s Hospital in Halifax (The IWK). I could easily tell why it was so highly recognized. The staff at the Fetal Assessment Unit were amazing. They explained that I would be having an ultrasound and then I would have a consultation with the head of the Unit, who would explain the results and outline the course of action for us. The first thing that amazed me was that I didn’t have to drink any water for this ultrasound. The equipment is so sophisticated that my bladder did not need to be full for them to see the baby. Awesome! The second thing that pleased me was that hubby was permitted to be with me from the get-go.

My enthusiasm was unfortunately, short-lived. The events that transpired over the next half-an-hour would change our lives forever. The ultrasound technician didn’t waste any time doing her thing and after about 10 minutes went to get the Doctor. He came in and looked at things for about the same amount of time and told us very point blank that things were much more serious than first anticipated. Not only was the baby’s bowel exposed, but all lower internal organs were exposed as the abdomen wasn’t closing over at all. There were also issues with the size of the lungs and the heart size. Scoliosis of the spine was also evident as were extra digits on one hand and foot. The baby would stay alive as long as I carried, but there was less than a quarter of a percent change that survival outside the womb would be possible. The extent of the condition was too grave. Simply put, there was nothing that could be done to save our baby.

The baby suffered from ABS (Amniotic Band Syndrome). Basically the amniotic sac developed a tear and the tear caused that part of the sac to almost “shred” and attack the baby. Normally, the shredded sac will attach to the umbilical cord, or digits or limbs. In our case it attached to the umbilical cord at the base of the baby’s abdomen and a hand and foot. There is a greater chance of survival with children born from the condition. Death of a child is uncommon and noted only in the most severe cases.

He explained that even though the baby would continue to grow and move inside me as the pregnancy continued, the added stress on my uterus could possibly be too much for my body to handle. As the baby grew, my life was actually in jeopardy and he strongly advised delivering the baby immediately to avoid and unnecessary trauma to me. When Mike heard that there was even the slightest possibility that carry to term could put me at risk, he made the decision. We had to do this now. We had a 5 year old boy at home who needed his mother. If there was no chance that the baby was going to survive regardless of whether I carried to term or not, he couldn’t take the risk of anything happening to me. It my head, I knew he was right. My heart however, was another story.

We left the ultrasound room and met with a nurse from the Fetal Assessment Unit who sat with us, talked with us, cried with us. She explained how everything was going to work. Because of the size of the baby and the fact that I was over 20 weeks, they had to induce labour. I would have to deliver this baby. This could happen as early as the following day. My head was spinning, I felt like I was going to be sick and I couldn’t remember half of what we talked about. All I could think about was having to call our family, 4 hours away and tell them that the appointment I went to Halifax for has turned into so much more. I came to Halifax pregnant and I would be going home with nothing. During the time we spent with the nurse, there was paperwork we had to take care of. In the event that the baby was born alive, we had to do birth-certificates and death-certificates. She explained that the odds of the baby being born alive were very very slim. The trauma of going through the birth canal would be more than the baby could handle, but these things had to be done – just in case.

We left the hospital feeling numb. We went back to our hotel room and started making phone calls. My parents (with strict instructions to try and keep everything from Matthew until we arrived home), Mike’s Mom, my sister, and our closest cousins and friends. We cried and we cried. But we knew it was for the best. Mom and Mike’s Mom wanted to come to Halifax to be with us. No. This was something we had to do ourselves. Once we finished up with the phone calls, we had to go out. Just go get away from things. We went and got some dinner, and with not being prepared to stay in Halifax, we had to go buy a few things to get us through the next couple of days. We spent the evening talking and we realized this was the first thing that has happened to us since we were married 11 years previously that we handled 100% by ourselves – just the 2 of us. No parents, no outside influences, nothing. I felt at peace with that. Mike and I were able to deal with and try to come to terms with this on our own before we headed back home to face everyone. We were back at the hotel room and in bed early. Tomorrow would be a long day.

We arrived at the hospital for 10:00. Once the paperwork for admittance was done, we were back at the Fetal Assessment Unit and more of the procedure was explained to us. We were taken to our room and introduced to our nurse (she was assigned only to me), and the other nurse who was there for the baby. There was another room right next to my room that was a sitting room, just for us. We were free to come and go as long as I felt comfortable enough to do so. They made us feel so at ease and so at home. The staff were simply wonderful. Soon after we were settled, we were introduced to the Doctor who would induce me. She was a very kind lady who didn’t leave until she was sure all our questions were answered. At 12 noon they began inducing me. The type of induction was quite simple and painless. There were tablets inserted vaginally every 4 hours. I was told the procedure could take between 24-48 hours. That didn’t thrill me a lot. Once the first tablets were inserted we went for a walk outside on the hospital grounds. It was a gorgeous day and it was nice to be out in the sunshine. We were able to talk with our family at home and checked in with them a few times throughout the day. At 4:00 we returned for another dosage of the medication. By 5pm, Mike was getting hungry and they were bringing me my supper, so he decided to walk down and get something at the cafeteria. In the 10-15 minutes that he was gone, I went from walking around the room to being very nauseated, vomiting, and starting to experience severe cramping. He was shocked, to say the least when he returned to fond the nurses hooking me up to an IV.

Over the next couple of hours I was in active labour. I was not dilating, so it was still going to be quite some time. Close to 8pm a new Doctor came in to administer another dosage. I was in a lot of pain and very uncomfortable. As soon as she finished, I felt like I had to go to the washroom. I was in a lot of pain so they brought a chair over next to the bed for me to use. Once I sat on the chair I couldn’t believe what had happened.

The baby was born. I looked at Mike and simply said, “That was the baby.” He quickly called for the nurses, they came in and he told them that I had the baby while sitting on the chair. They were beyond stunned and somewhat in disbelief. I can remember that time absolutely stood still at that point. I can remember looking up at the clock and it said 8:00. Suddenly there was a lot of commotion around me, but it was like I was watching it all on a screen. I focused on Mike, who was handing scissors to one of the nurses and I said “Leave it to me to give birth to a baby in a portable toilet.” Of course, they had to be careful when cutting the cord and getting the baby and then trying to get me back into the bed. I can’t do anything the easy way. Two of the nurses went with the baby while the Doctor examined me and together we determined the best thing might now be for me to go and have a D&C to make sure everything was cleaned out.

We decided the day before that Mike would see the baby. If he thought I could handle seeing the baby, I would and if not I wouldn’t. He knew what I would be able to handle. While the Doctor was with me, Mike went with the nurses to be with our baby. Shortly after, Mike returned holding the most precious, most tiny, most perfect looking baby girl in the palm of his hand. She was born an angel. She was a mere 7 inches long and weighed half a pound. He handed her to me and again, time stood still. She was absolutely beautiful. She looked identical to her big brother. She was Emily Ann Rose. She was our girl. Soon I was taken down to surgery and Mike kept Emily with him while he made phone calls to the family at home. It was only about an hour before I was returned to my room, my husband and my baby girl. A minister arrived and spoke with us for the longest time, but I was really out of it from the anaesthetic, and as much as I tried to pay attention, I knew I was dosing in and out. Finally, it was just the 3 of us for another little while and then I dosed of to sleep for the night.

The next morning I was given the all-clear to leave after it was determined that it was safe to do so. They suggested that I stay in the city for one more day just in case I had any complications with bleeding. We left and went back to the hotel where we both slept again for hours. We decided we would stay for the night and head home in the morning. We spent the better part of the evening again on the phone, talking with our family at home.

We had to explain to them that we left Emily at the hospital. It was our choice. It was as much a teaching hospital as it was a practicing hospital and I wanted the staff to do whatever testing they could to determine what happened with our little girl. Perhaps they would be able to find something that would save some other family from ever having to go through they horror we went through the previous 36 hours.

We didn’t leave without memories of Emily. The staff at the hospital put together a beautiful Memory Box for Emily which contained the little outfit she was dressed in, as well as the exact same outfit without the staining on the front where her little abdomen had seeped some fluid through. The little hat she had on her head and a copy of her hand and foot prints were also included. There was literature for us to read on the loss of a child and many resources were provided to us as well. The Box is placed in a special spot in our home and every July 17, we have a look at it’s contents.

Upon returning home we told Matthew the news. We sat down in our home, just the 3 of us, and had a chat. I started explaining that the baby was sick and the Doctor’s tried their very best to do what they could. He stopped me in mid sentences and asked quite bluntly, “Are you trying to tell me that my baby’s dead?” There was no longer any need to beat around the bush. He was understandably upset, but handled things like a real little trooper.

Over the next few days our home was very busy with family and friends stopping by. I was so glad Mike and I had a couple of days to come to terms with all this. It made it a little easier when it came to having to explain our story so many times. Everyone was so wonderful and meant so well, but I longed for the time when it would be just the 3 of us again.

About a week later we held a Memorial Service for our baby Emily Ann Rose. It was so beautiful and so appropriate.

Even though she was not with us, she couldn’t have been closer. We had our Angel in Heaven. We had our boy here with us. It was time to let the healing begin. It was time to try to enjoy the rest of our summer. Our big boy would be starting school in September. Something to look forward to, for sure. Or would it?

Until next time…

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I don’t know about you but I have a very hard time putting myself first sometimes.  My kids, my husband, my employer, my family, my friends; their needs, wants, feelings, problems, successes are all normally ahead of my own.  It’s no problem, I’ve made it that way.  That’s the way I want it.  I enjoy doing for others and I love being there for those close to me.  I’m glad people feel as though they can come to me and (9 times out of 10) they know I am going to drop everything and be there – 100%.  That’s just me.  Always has been and to an extent I suppose it always will be.  Asking for nothing in return as I very rarely do.   I love that people know they can count on me.  I love being able to help, I love being able to listen.  This is all part of my personality and I am very happy with it.  There’s not all things (of course) that I am happy with about myself but my commitment to those close to me is definitely one of my best traits and I am proud to be able to say that.

There have been very few times in my life that I have asked for, needed, demanded, requested or suggested something for myself.  Whether it be a favor, an action, help with something, or a need fulfilled I have very rarely ever allowed myself to depend on someone to do something that required putting me first.   That’s just the way it’s always worked for me.  I’ve been fortunate that I haven’t had to call on others to put me first.

I have always lived my life with the mantra “Do onto others as you would have done onto you.”  If someone needs me, I’m there.  Good times, bad times; doesn’t matter.  As a daughter, sister, cousin, niece, employee, friend, coworker, wife, mother or whomever it doesn’t matter – when someone close to me needs me I’m there.  No questions asked.  I always assumed when and if the time ever came that I would need someone to be there for me I would be treated with the same respect and courtesy.  No questions asked.

Over the last number of years I have learned that’s not always the case.  As long as others are happy, as long as others lives are going along wonderfully to hell with everyone else.  I have come up against coworkers who would stab me in the back rather  than remember the time I covered theirs.   I have had people who would spit in my face after I wiped the tears off their face.  I have helped heal broken hearts only to have my own crumble.

Every relationship, every encounter we make with another person allows us the chance to learn something.  Some relationships are brief and we may never know the reason for their part in our life.  Others are more long term.  Sometimes we are totally oblivious to the part someone has played in our life and at other times their impact on us will never be forgotten.  People stay in our lives and we never have the chance to get to know them as well as we could and others get close enough to us that we feel as though we have known them our entire lives.  The contacts we make and the roads we choose to follow with people absolutely amaze me.  If we hadn’t been in a certain place at a certain time perhaps we wouldn’t have met a certain person and I wonder how different life would be.

Why is it that we can put a smile on our face and say hello to a total stranger yet walk into our place of work, our home or that of a family member or friend and not always offer them the same courtesy?  And when we can’t or don’t what does that say about us?  Are we so complacent with those who are closest to us that we can’t give them the same consideration and “good will” that we would give a total stranger?

Tonight my wish is for us all to try to not be complacent with those closest to us.  Sometimes we may need to read between the lines a little bit to really see it but by looking hard enough we can all see what is needed by those we love.  It doesn’t take a psychology degree or a masters in communication to open our hearts to those around us.  Because someday that person whom you trust with your life, the very same person who is always there for you just may need a little something from you, and no matter how small and insignificant it may seem, it could be that person’s world.   Always try to be the person you would like and hope for someone else to be for you.

Until next time…

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So what does it all mean?  It’s really just another day, isn’t it?  Or is it?

New Year’s Day often brings with it a list of resolutions, promises, goals, and expectations.  It’s a “rebirth” of sorts allowing us to examine our lives; what we like, what we’d like to change and how we hope to accomplish it all.  Why is it easier to do this on January 1st?  Why can’t we do it on May 27th or August 7th?  Why do we use this particular day to inventory ourselves?  How many people are vigilant with their resolutions throughout the year?  How many people are vigilant with themselves throughout the year?

What would I like to change for 2011?  Not much.  I’m not one for really wishing things were different.  It’s plain and simple for me – it is what it is.  I am a firm believer that things happen for a reason and nothing is an accident.  How we choose to react to what happens to us makes all the difference.  Yes, situations happen that we may have no control over but we do have control over what we do about those situations.  Our resolutions to issues that surface may not be a “quick fix” or an immediate relief.  At times, what life hands us requires is to make long term changes in ways that may take years to accomplish – and that’s okay!  Think of all the new avenues traveled because of long term changes.  Think about what may never have been experienced otherwise.

What would I resolve to do for 2011.  Hhhmm?  I resolve to continue to be true to myself and my family.  I resolve to expect nothing less than what I deserve and I resolve to not allow people to treat me any less than I deserve to be treated.  You see, I am kind of a push-over at times.  I have a habit of not standing up for myself (with anyone other than my husband) and I just go with the flow for fear of the consequences.  But you know something?  By standing up for what I deserve and for what should be right, the world isn’t going to come to an end.  I may just end up a stronger person because I stood up for something I believe in.  We  all know that if it came to my son or my family, I’d do it in a heartbeat.  Don’t I deserve the same from myself?  Yep, I do.  Okay, there’s resolution #1.

I am far from perfect (aren’t we all?), and I am very pleased with the way I lead my life.  I have nothing I am ashamed of.  I’m not mean to people and I treat people the way I would hope to be treated.   I don’t lie nor am I phony.   Overall, I can go to bed every night and sleep well knowing that I was true to myself and I am a good person.

Now please don’t get me wrong – this isn’t a “Tracey-thinks-she’s-wonderful” rant – not at all.  But it is a “Tracey-is-pleased-with-her-life” rant.  Life could always be better, I know that.  We could always have more money, a better job, nicer “things”.  There are always things we’ll want. That’s human nature.  I have what I need. If I constantly obsessed over what I wanted that would make me greedy and not appreciate what I have.   It’s not about “stuff” for me.  Sure, there are things I would like to have and stuff I don’t need that I get.  Don’t we all?  The difference is I guess that I am happy with what I have.  I will always work towards moving forward and advancing.  I will never settle, but I will accept.   I will not lose sight of today because of what I don’t have or what I could have and what I think I should have.  I try to enjoy the moment and be thankful of what I have.  There are down times and we all have them.  I believe we have to have them, but we can’t lose sight of the good during the bad.  The bad helps me realize the good.  And there is a lot of good.

So I guess for 2011 my game-plan is to keep on going.  Continue to enjoy what I have, continue to be a person who people can rely on and continue to try to raise a family to the best of my ability.  2010 was a year of extreme growth for my family and I.  We achieved accomplishments in 2010 that I never thought we would tackle.  We faced issues that I had never dreamed of.  But, we got through them.  I hope to be able to say the same this time next year.

I hope you enjoy your year.  I trust you will accept everything that comes your way this year with an open-mind and a promise to yourself to be the best you can be.

Until next time…

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I have a monster in my home and I hate it. I very rarely use the term “hate” to describe anything but I HATE this monster.  It’s name is Autism.

Autism is here in our home every day, but mostly it blends into the woodwork and I rarely see it’s ugly head.  This weekend it has held us hostage.  This weekend it took control of our home and it is taking everything I have to win the battle – ownership of my home and my family.

Not only has this monster taken over my son but it also slithered it’s way between my husband and I temporarily.  The monster is very sneaky that way.  Since we were first introduced to the monster I have had great success keeping it at bay.  Every once in a while however, I become complacent and tend to forget about it.  When I do it surprises me with a guest appearance.   For the most part it inflicts no harm; it is constantly lurking but we have learned to deal with it’s little idiosyncrasies and have adapted our lives so the monster does not control us.  Normally, we can control the monster.

Until the monster entered our world I never thought about it.  I’m not scared of the monster, I’m not intimidated by the monster and I will not let the monster take over my home or my family.   When the monster moved into our world I didn’t even know anyone living with the same monster so I could get some advice or words of wisdom.  Sure, there was a monster group but the people in that group seemed afraid of the monster and seemed to let the monster rule their lives.  I didn’t agree with that.  It was still my home and if the monster was coming into my home it was still going to play by my rules.  Ultimately, I do have a say in how this monster affects our lives.  Yes, we have to make a few changes to accommodate this monster, but basic day to day dealings will not be affected.  Because we have a monster living with us cannot and will not be an excuse for any of us.  This monster may impede us momentarily but the longer the monster is here the more we are all learning how to live with it instead of against it.

Makes me wonder how it got smarter than us this weekend, though?  Maybe smarter isn’t the right word.   I think the monster got scared.  I think life has been going on so wonderfully that the monster was getting worried that we’d forget about it.  It came through with a vengeance and we almost let it win.   Almost.  The monster succeeded in reminding us that it is still there, but that’s all it succeeded at.  The monster didn’t win this fight, the monster didn’t take control of our home or anyone in it.  I rose above the monster and put our family back in order.  I will not let the monster win.  I will not let the monster divide this family and I will not let the monster ever put us through a weekend like it did this weekend.  It almost won that round.  Almost.  A good effort was shown, but in the end we prevailed.

The monster has been put back in its place.

Until next time…

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He looked at me tonight and asked

“Why was I born this way?

“Why do I live with autism,

Each and every day?”

My heart sank to a place

It’s never been before.

I prayed for words to help me

Because I wasn’t sure.

“Why do you think the grass is green?

And why is the sky so blue?

Why do leaves change colour each fall

And then next spring grow new?”

“That’s easy, Mom,” he said to me

“I’ll tell you why it’s so.

Our eyes are windows to our hearts

Where our love will grow and grow.

If we couldn’t see the grass turn green

Or the sky light up so blue

We’d never take the time to see

The beauty of our world so true.”

My heart soared to a place

It’s never been before.

I had the words to help me

And this time I was sure.

“Autism is like the grass and sky

And leaves that turn each year

It makes us take the time to see

Another beauty that’s so near.

Each of us is different

And we all have much to give

Our eyes are windows to our hearts

Where the love within us lives.

Like the grass is green

And the sky is blue

And leaves turn colour each fall

Autism is a beauty lying within you.

You see the world so different

Through your eyes so pure.

That window to your heart

Has taught me much for sure.”

I looked at him tonight and said

“I know why you were you born this way.

You live with autism to show the world

How to love each and every day.”

Tracey Hilliard

Oct 22/10

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So it’s been 2 1/2 weeks now since I turned 40.  That looks so strange when I type the number.  40.  Wow.  What does it all mean?

Well, for starters it means I have been with my husband for half of my entire life.  It means I have been “legal” longer than I have not been.  It means I am the same age as my mother was when I was 16.  It means my parents will be married for 42 years in just 2 weeks.  It means my oldest son is 14 and my youngest is almost 2 1/2.  It means my sister is 35 and my husband is 43. It means I have 25 years until I turn 65.   It’s nothing more than a time line.

I feel very little difference in my life.  I still “feel” the same way I did when I was in high school.  Other than a few more aches and pains, I feel the same physically.  Mentally I don’t “feel” like I’m 40 – although I’m not really sure how I’m supposed to feel.  When I stop and think of my Mom at my age now, she seemed old to me.  I can remember when she turned forty.  My sister and I had a surprise party for her.  She always seemed the same – she never age; she was always Mom and always old. Did she think of her Mom the same way?  Now, she is 63 and although she doesn’t seem any older to me now than she did when I was younger, she was still old. Does this make any sense at all?  Do you think Matthew sees me as old?

I think my 40 and Mom’s 40 are different.  Mom was a stay-at-home-Mom who devoted herself to my sister, my Dad and me and her daily job was making sure our home was clean enough to eat off the floors and everything we needed was always just so.  Supper was always on the table when my Dad came in the door and when I think back now there was very little time just for her.  We were her world and her home was our haven.   She took immense pride in her job and it showed in every way.

My 40 sees me working outside the home full time with a hubby who works shift work.  I am normally the one who comes home to supper being placed in front of me and the weekends are spent doing a “power cleaning” around the house.  Life seems more rushed and once bedtime rolls around I fall into bed.

How did our 40’s end up being so different?  Is it something I did, she did or society did differently?  Life in general has changed.  40 no longer seems old .  Is it that there is no longer the structure that there was years ago or that we have more need to be at a quicker pace to get everything done?  I don’t know what the answers are.

What is 40 going to be like in 26 years when Matthew is there?

I find it captivating to really sit and think about because the number itself hasn’t changed but the way it is viewed certainly has.  Time goes on and our world changes daily around us.  Technology advances, families grow and expand, people come into and leave our lives, children grow.  there have been lots and lots of changes since I was Matthew’s age but I still feel the same.  I’ve adapted to changes and made them a part of my life.  In ways I feel like nothing has changed even though I know it has.

What a circle of silliness I am going round with this.  It makes no sense reading it back and I probably have you confused and make no sense at all.  LOL  Welcome to me trying to justify it all in my head.

I guess it just one of those things that is.  No trying to justify it or explain it is going to make me understand it any better.

I’m 40 – and it is what it is.

Until next time…

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As of tomorrow we will be 2 weeks in.  So far so good.  Matt’s TA has been with him on a week-to-week basis (being reevaluated tomorrow) and thankfully he has had a good two weeks.  There have been a couple of small instances that quickly dissipated only because Michelle was with him and knew what to do to calm the situation.

Tuesday evening he looked at me and I heard the words I have longed to hear from him for years.  “Mom, I can’t wait to go to school tomorrow.  I love my school!”  I tried very hard to control myself!!  I was ready to jump for joy!  He quickly followed this up by “Now, don’t get used to that, I may not feel that way every day!” but at this point I’ll take what I can get!

Then last night he asked us to get him up early so he could go for a bike ride or a walk before school!  He was actually up this morning BEFORE we woke him.  Had breakfast, got dressed, made his bed and was outside for well over an hour before he had to leave for school.  WOW – just wow!!

I know this could all change by the time he gets home this afternoon, but I’ll take what I can get at this point.  He is enjoying his new school, seems to be getting to know some of the kids and is getting back on schedule.  His mood has improved drastically and we haven’t had 1 meltdown since school resumed.  *sigh of relief*

Until next time…

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We have been working tirelessly at trying to retain Matthew’s Teacher’s Assistant as he moves from elementary to junior high school.  He will still have a full time TA but it won’t be the same TA he has had for the last 3 out of 4 years.

We began back early July with petitioning the school board (elected and administrative members).  Trying to personally see each elected member, this took a lot of our time but we felt if they could hear our story in person they would form a better connection with Matthew and with our plight.

With vacations, our progress was a snail’s pace at best.  We also continued to wait for a letter from Matthew’s pediatrician explaining how change is not conducive to someone who lives with Asperger’s Syndrome.  He is a busy man.  Our letter was not coming.

Finally, after taking the last meltdown we could handle we decided that once the pediatrician returned from vacation we would sit in his office until he had 5 minutes available to see us.  Time is getting on, school would be starting soon and Matthew’s anxiety was growing.

Monday arrived and he was back from his vacation so Mike headed to the office.  Fortunately, his receptionist was aware of our issues this summer and had Mike in to see him within 40 minutes.  the conversation was short and sweet.  He wanted to see Matthew.  He would write a letter but he wanted to talk with Matthew first.

Yikes!!! This is good and bad as Matthew has no clue that we are attempting to keep his TA with him.  In case we were unsuccessful with our journey we didn’t want to have to disappoint Matt again.  However, it looks as though we are going to have to bring him into the loop.  We talked with him that night and told him he would be going in to talk with the pediatrician.  He immediately started to cry.  He didn’t want to, he was nervous, he was scared, what if he said something wrong, and on and on.  We tried to validate and work our way through his feelings.

We just arrived home from the appointment.

I am emotionally exhausted. I can only imagine how Matthew is feeling.

He was a bundle of nerves heading up to the hospital. He was crying and all upset. We had to wait about 35 minutes once we got there and then the receptionist came out and said Dr Lynk wanted to talk to Matthew alone. I almost threw up – I couldn’t even look at Matt because I knew he would lose it. I sat there and thankfully Titia, Sharon and Liz kept me sane by talking with me via BBM.  He was in there probably 15-20 minutes and then he came out and said Dr Lynk wanted to see me. When I got in there Dr Lynk was taking his blood pressure, pulse and listening to his heart rate. He told Matt to go out in the outer office that he wanted to talk with me.

He started off by apologizing that this has taken so long and I immediately thanked him for finally being the one who spoke with Matthew and took the time to listen to how he felt about all this.

He told me point blank that he was VERY concerned about Matthew’s well-being and that 5 days was absolutely not going to be acceptable. Matthew needed more than that and although he could not promise Michelle for a full year he could promise that he was going to have her for more than 5 days because “at this point there is no way Matthew can go to that school without her”. He told me that if anything Mike “under-exaggerated” what Matthew has gone through this summer when Mike spoke with him on Monday.

Long story as short as I can make it he is writing a letter – however, before he writes the letter he will be having a conversation with the person at the school board who can make this happen. he is calling her tomorrow. He wanted to know where he could reach us tomorrow and started that if we do not hear from him by 5pm that I am to call his office. This is being dealt with “immediately”.

He was frazzled by Matthew and FINALLY someone else saw what we have lived with the last few months. Not that I like to see Matt upset, but I am so glad Matthew really REALLY showed his emotions today and let the Dr see how this has affected him.

I am so proud of him!! It tore my heart and soul right out of my body to see him in that state today but I’m glad he reacted the way I hoped he would and Dr Lynk could see that this just wasn’t Tracey and Mike squawking, not knowing what we were talking about. HE GETS IT!!! And he has the authority to make something happen and he said he would do it!!!!!!!!!!

FINALLY!!!!!!!!

With any luck, this time tomorrow we will have a better idea of what’s going to happen, but I’m pretty sure that if nothing happens he will be under Dr.’s orders NOT to go to school until things are settled.

Guys, I know I have been going on and on about this for a while now – today someone saw a glimpse into our world and is willing to help us. Thank you all for standing by us and offering as much support as you have. You gave both Mike and I the strength we needed to go on some days. This may not be settled yet but I feel as though we’re a whole lot closer than we were 5 hours ago.

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19 years ago today I did something I often wondered if I would have be “lucky” enough to do.  I became a wife.  I was married.  I was 20 years old and had no idea what the future held.  Still in university with only a part-time job, but I was getting married.

As I sit and reflect on the past 19 years I wonder first of all where the heck they went??  Holy jumpins’ it seems like just yesterday!  Seriously! Then I think about all the people who have come and gone over the last 19 years.  I think of how our circle of family and friends have grown and changed over the past number of years and in the same breath how many things have remained constant.   I think of the person I was 19 years ago and I think of who I am now – it’s like I’ve gone through a metamorphosis of sorts.  I am certainly, by no means, the same person I was the day I was married.

I look back at all that has happened and I could laugh and cry all at the same time.  So many memories; so much heartache yet so many smiles.  There have been times that I wondered how we would survive the next 2 hours let-alone the next number of years, but we did it.  We struggled, we fought, we did all the stuff most couples do, but above everything else – we loved.

Mike started out as my “friend” (whom I always said I would never be caught dead with out on  a date, let alone married to…LOL) and I am so honored and thrilled to say that he is still my friend, my soul-mate, my confidant, my strength and so much more.

I often get asked if I have any regrets or if I would do anything different if I had the chance and I’m happy to say the answer is no.  There is nothing I would change and no regrets whatsoever.  Anything and everything that has happened to us over the past 19 years has happened for a reason.  The good, the bad and the indifferent.  It has all made us the couple we have grown into today.

We are truly blessed to have 2 boys who are the lights of our lives for they have taught us more than we could ever possibly teach them.  We have our angel-girl watching over us from above guiding us on our way.  We have the most amazing parents, sibling, family and friends that a couple could ask for.  We could never have imagined that over the last 19 years we would grow from being “just” Tracey and Mike to the now invincible “Team Hilliard”!

So on this, our 19 wedding anniversary, I would like to first of all thank my wonderful husband for making me see that yes, I would go out on a date with him and yes, I would become his wife.  I love you Mike and I always will.  And second of all I would like to thank you because if you are reading this, then you are a part of our life.  You have made a difference in our lives and I thank you for that.

I am truly fortunate and I will always be thankful that Mike made my “Dream Come True”.

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