Not all will apply to everyone, but many do apply.  For example – taking/getting them out.  This will help many, but not everyone.  Each individual is at a different stage in their grief and will know when they are ready to do certain things.

For anyone who has lost someone close, you may find it quite helpful also.  We wanted to share it with you.  The author is unknown.  There are some different versions out there, but this is the one we chose and like.

A WISH LIST

• I wish you would not be afraid to speak my loved one’s name.  They lived and were important and I need to hear their name.

• If I cry and get emotional if we talk about my loved one, I wish you knew that it isn’t be because you hurt me:  the fact that they died causes my tears.

• You have allowed me to cry and I thank you.  Crying and emotional outbursts are healing.

• I will have emotional highs and lows, ups and downs.  I wish you wouldn’t think that if I have a good cry my grief is all over, or that if I have a bad day I need psychiatric counseling.

• Being Bereaved is not contagious, so I wish you wouldn’t stay away from me.

• I wish you all the “crazy” grief reaction that I am having are in face very normal.  Depression, anger, fear, hopelessness and questioning of values and beliefs are to be expected following a death.

• I wish you wouldn’t expect my grief to be over in 6 months.  The first few years are going to be exceedingly traumatic for me.  As with alcoholics, I will never be “cured” or a “formerly bereaved”, but forevermore be recovering from my bereavement.

• I wish you understood the physical reaction to grief.  I may gain weight, lose weight, sleep all the time or not at all, develop a host of illnesses and be accident prone, all of which are related to my grief.

• Our loved one’s birthday, the anniversary of their death and the holidays can be terrible times for us.  I wish you could tell that you are thinking of us and them on these days.  And if we get quiet and withdrawn, just know that are thinking about them and don’t try to coerce us into being cheerful.

• I wish you wouldn’t offer to take me out for a drink, or to a party, this is just a temporary crutch and the only way I can get through this grief is to experience it.  I have to hurt before I can heal.

• I wish you understood that grief changes people.  I am not the same person I was before my beloved died and I will never be that person again.  If you keep waiting for me to “get back to my old self” you will stay frustrated.  I am a new creature with new thoughts, dreams, aspirations, values and beliefs.  Please try to get to know this different me – I’m the one who’ll be here from now on.

Author Unknown

The truth is, parents of special needs children deal with unique grief from the moment of diagnosis of their child(ren). It’s a different type of grief and many don’t understand it. Parents of special needs children can get struck with grief at any moment and it’s a cycle that happens again and again. They don’t always go through the regular stages and find resolution.

What made me think I was misled was that when the article asked what grief experiences have snuck up on you lately, the answers all had to do with children that were still alive. I was taken aback as I had thought the article was going to be about loss. The loss of a child. Although the article was still true with it’s content, I felt misled.

We as parents have been grieving for our children all along. It’s difficult to explain but there is a different type of grief associated with raising a child with special needs. Some may say it’s not grief, but the reality is that it is a type of grief even if we don’t want to admit it. The grief we experience is sudden situations and/or circumstances that remind us that our child(ren) aren’t able to do certain things as their peers do. They aren’t at ‘level’s’ they should be for their age etc…the list could go on…

To us, our child(ren) is/are perfect. Even with our own imperfections, we are all perfect in God’s eyes. We are who we are for a reason and there is a plan for each and every one of us. Even as parents, we know our children are different, but this is normal for them and normal for us.

I hadn’t really thought about, that to a degree I was also grieving during those years. I never looked at things Patrick couldn’t do as a loss though because there were so many other things he could do even if it had to modified for him to do it. He smiled so much and so often, how could one look at it as grief?

The grief now is SO different. I have those moments when something all of a sudden strikes me and I am in tears, wishing with all my might that Patrick was still here. That I could hear his laugh, see his smile, hold his hand and get a hug from him.

For myself, I feel a loss in my self esteem and confidence. I hesitate to make decisions on my own now, which sounds odd because I had to make decisions ALL the time with regards to Patrick’s life! I’ve gained weight (even watching what I eat) and can’t seem to lose the weight as easily as I could before.  Tired feels like part of my vocabulary now. I feel like I’ve been running non-stop for almost 17 years, and now my body seems to feel like it needs time to recuperate from all those years. It’s frustrating because all these losses I feel, I didn’t feel before when Patrick was here.

I think I feel like Patrick made me strong. He was strong, and maybe he felt I was too and we fed off each other that way, and it worked!  We were a great team together!

As many of you know we started Grief Group a couple weeks ago.  With many being away this week, group was cancelled, but next week I am going to share this with the other parents attending and get some feedback and thoughts on this.

Let me finish off though with this…

Although the loss is huge, the JOYS are many!  Recalling the joy of who he was, how he interacted with others, the way he made people feel and especially how happy and proud he made us feel…that will never go away!!

Focusing on the JOYS makes the loss a little easier each time.  Sharing about him makes the loss a little easier each time.  Some may tire of hearing about him, but we never will!  His impact and legacy has helped and will continue to help many people and for that we are truly grateful!!

Thank you to everyone who has been so supportive, loving, kind and generous.  We couldn’t have done it without you either.  Thank you for being a part of our lives, whether near or far, we love you all!

His laugh was infectious! He loved to laugh!!

Patrick & Bruiser!

Playing with the camera on Patrick’s iPad. He loved seeing Auntie Rosanne!

Last year, after Patrick’s Wish Trip and before Christmas, I finally did something I should have done years ago. I created a ‘fan page’ for Patrick on Facebook. It was an easier solution for people who follow him and see what he’s up to and how he’s doing.

I just wanted to post this quick update that we are still here and hanging in. Patrick has been quite seriously ill. All the updates have been posted on his page if anyone would like to follow along.

https://www.facebook.com/notbythebooks

Watch for more…thanks everyone for your support!

Have an awesome weekend!!

Take a look at the Drop Zone website for more information about all the different drops that have happened and yet to happen!

You can take a look at some photos of previous Drop Zones!  Some amazing photos!

That’s ME on the right last year coming down the building

Please support Easter Seals and help kids with physical disabilities succeed!

Everyday people are getting out of their comfort zones for Easter Seals kids!

The 3rd Annual Easter Seals Drop Zone London will take place Thursday, September 12, 2013 challenging participants to raise a minimum of $1,500 in pledges in order to rappel down the 26-storey building at One London Place, 255 Queens Ave. Everyday people will become “Superheroes” for a day by raising much needed funds for kids with physical disabilities, and challenging themselves in an exciting event that is both safe and fun!

Please support Easter Seals and help kids with physical disabilities succeed!

Having always appreciated and been grateful for Easter Seals and their support for the many things my son Patrick has and uses.

We have built a team this year and want to return the favour so to speak and do our best to raise the minimum $1500/pp (and more if possible) and do our part in raising money for this amazing organization!

This will be my 2nd time doing this, and a first for Mark & Dave on our team, but being able to support something that does so much for so many other children/families, it will be our honour to participate!

Please help us reach the minimum donation goal of $1500/pp to be able to participate in this wonderful event and opportunity to give back!

Thank you so much for helping us be able to participate and give back to something so great!

Here is the link to pledge online.  Ask/Share with your friends, family, bosses & co-workers!  We need your help!!

Thank you so much!!

They have been such a great help for Patrick over the years and we need this program to be able to stay around to help ALL families with children with disabilities!!

This means a lot to me!

Please don’t hesitate!! You can donate up till next Thurs!  PLEASE help me reach my goal so I can participate next week!  Any amount will help!  Donate online by clicking the link below or writing a cheque made out to Easter Seals Ontario.  Cash and email money transfer is acceptable as well.  Email me for details.

CLICK HERE TO DONATE!

Thank you so much!

Come on out to One London Place next Thursday and watch all the Super Heroes do their part for Easter Seals!!

Hugs my friends!

First video blog! They will get better I promise!

Click the ^above^ picture to watch this blog post!

Have you ever thought about what exactly you do in a day?

Have you ever thought about how easy your life is?   Easy you say? My life easy?

Take a moment and think about what you did this morning when you got up and started your day.

You got yourself out of bed – you went to the washroom – you brushed your teeth – you had a shower – you got dressed – you made coffee/tea – maybe you had time to read the paper or check emails before jumping into your car and heading to work, the gym, shopping or where ever.

Does any of this sound familiar at all? I’m positive some of it applies to many.

Now…imagine this…

You’re lying in bed awake, ready to get up.  But wait…you can’t!  You have to wait for someone to come help you get out of bed.

Perhaps you’d call out to someone to come help you…but wait…you’re not able to speak.  Maybe you use an augmentative communication device to speak for you, you might be able to use it to help you get someone.

Now…someone has arrived to help you get up.  Maybe they even need to help you get dressed.  Perhaps you need help using the washroom.  If you need help for these things, you’re going to need help in the shower as well, right?

What if you couldn’t eat anymore?  What if you could, but it wasn’t recommended you do, due to health risks it would cause if you did.  Imagine being fed through a tube in your nose or your stomach.  Not being able to taste food anymore!

Those a just a few thoughts for you to think about at the moment.  Stop and really think about it.  What if that was you?  How would you feel?

Now let’s see, based on the above questions, let’s surmise that you aren’t able to walk, so you would likely be in a wheelchair.  (Let’s make a little side note here that there are many types of disabilities and not all of them require use of a wheelchair or other assistive devices).  Let’s also assume that because you can’t eat orally, you have a g-tube with which you get your nutrition.

Did you walk to your car or to work or the gym today?   There are literally thousands of people who weren’t able to.  Have you ever thought about getting around in a wheelchair?   Think about some of the places you go and take a visual as to how accessible they are?  Are there ramps?  Automatic buttons for the doors?  That are in reach?  Are the doorways wide enough for your wheelchair?  Are the things you use everyday within reach for you?

Seems like a lot to think about so far doesn’t it?

On the other side of the coin so to speak, what if you were the one who was helping that person everyday?   Circumstances are different for everyone and every situation it’s true, but suppose you had to get someone else ready to for their day before you could get started with yours.  Oh wait, this is how you start your day.

What if you were the parent and this was your child?  There are thousands of families that do this everyday!  This is their life!

How would you cope/handle things?  Do you think you could?   Without complaining?

Imagine all the things you will have had to learn and the all the things you’ll continue to learn.  All the Doctors, therapists, nurses, teachers, suppliers of equipment and things your child needs.  All these people remember are multiples!! In other words, there are a number of doctors/specialists, there could be anywhere from 1-5 therapists, multiple nurses and teachers and a limited number of suppliers for your equipment and supplies needed.

Think about work.  Is your boss wonderful and patient enough to let you answer those calls from the school where you might be needed?  How about all the doctor’s appointments and tests/procedures your child may have?  What about the hospital stays?  Staying 24/7 at the hospital with your child because no one knows your child like you do!  No one there would understand your child’s communication either.  Who is the best advocate for your child?  YOU!!

watch the video for the rest….

Here is the link for Easter Seals Drop Zone 2013

http://my.e2rm.com/personalPage.aspx?registrationID=1810209&registrantPreview=1

Thank you so much!!

Today was a check-up appointment for Patrick with Nephrology.  This is the second time in a row I’ve come out of an appointment with information I didn’t have previously.  I am known to ask questions of the doctors and nurses, and they know I will continue to ask questions and talk to them till I am comfortable in my understanding and knowledge of whatever the issue is.  It looks as though I will need to start asking more detailed questions about reports, tests and scans.  I have also requested all clinic and hospital reports for the past year and all scans since 2005.

Let me start by saying that the update I’m about to give, may not sit well with many and I will emphasize repeatedly that we are/everyone is to dwell on the positive aspects of this information.

Without going into extreme details, I will begin with a bit of history that perhaps some don’t know or didn’t realize.  One of the ‘symptoms’ that typically goes with Patrick’s diagnosis of Meckel Syndrome, is polycystic kidneys.  This means that it is common for the kidneys to have and/or be covered in cysts.  The cysts get so bad that the kidneys end up having problems functioning and eventually shut down.  When Patrick was born, no cysts were detected or found.  A few years ago, a few started showing up on his ultra sounds.  There were only about 3 in total.  There had been no real issues with his kidney function…till about 4yrs ago.  It started to decrease.

In April of this year, we found out Patrick was in Stage 2 Chronic Kidney Disease and his kidney function had decreased to 60-65%.

Now, let’s jump to the present.

The appointment this week has brought some more information to light and also given us a bit of a reality check about this issue.  We’ve always known his kidneys were and were going to be an issue, but it’s always been tucked in the back of our minds as there hadn’t been any major issues and he was being managed well to look after them as best as possible to prolong them as much as possible.

Information this week has told us, Patrick’s kidney function is now 50%.  He also has more cysts on his kidneys.  The bigger Patrick gets, the harder it will be on his kidneys.

The Doctor told me that when his function gets to 30%, we will begin having talks about what will be the options for Patrick and what will be in his best interest.  A number of factors will come into play at that time, so it’s not something that can be discussed to much this early on.  The Doctor also mentioned that sometimes it is good to begin to discuss some of these things now, as it is generally more difficult in the ‘actual’ moment and our judgement can be ‘clouded’ sometimes in those types of situations.

They are managing him as best they can, as I mentioned, to prolong his kidney life as long as possible.  Some of the things they monitor are his phosphate and potassium levels, his blood pressure, his meds and a few other things.  Patrick’s ‘numbers/levels’ are good at this time under the circumstances, and that’s a great thing!! It means he’s being managed well!  Let’s keep that in mind!

Not to put a damper on things, or to sound morbid, but to a degree the reality of the situation has been brought a little closer to the front of our minds now.  The reason being, if his function continues to decrease at the rate it is now, we’ll be having these talks within 2 yrs.

But let’s try not to dwell on the future too much at this moment.  Patrick is a happy boy!  He loves school and being around his friends and family!  He loves to do crafts and bake!  He loves going for drives and music!  He’s an amazing young man!  He’s doing better and being looked after by the best people!  His numbers are good at this point as mentioned previously, so again, his health is being managed well at this time!

How can you smile not smile at this guy?

As most already know, Patrick was diagnosed with Meckel Syndrome.  At the time of his birth, there were no tests for this syndrome.

About 3yrs ago when Patrick had his cranial vault expansion, genetics was brought in to see if they could shed some light on what was going on with Patrick.  Was there any more or new information regarding Meckel Syndrome?  Was there anything else they could think of that could possibly be the cause of what was happening with him?

We found out then, there were now tests available for Meckel Syndrome!  I signed papers to give permission to have his blood sent for testing.  It had to be sent to the states and would take up to 3 months approximately for results to come back.

Fast forward a few months to the results of those initial tests…

There are actually 7 different tests!  Meckel Syndrome can be found on 7 different genes now.  When the results came back negative for all 7, we were quite surprised!!  This wasn’t the end though!  The Genetist was shocked on some of the results and wondered how he was going to tell us.

Apparently, 2 other damaged genes were discovered in this process.  Guess what?? Neither of these had ever been seen or documented before! Ever! Anywhere!  So we were asked to sign forms to take more blood so they could store his DNA and send it for more in depth testing and that the government would cover the cost of any and all further genetic testing for Patrick.  (It will likely take years before anyone finds anything out about these 2 new damaged genes.  We’ll be lucky if it’s in our life time)

Done!

Fast forward again to earlier this year…

As I mentioned, after an MRI during this admission, something was noticed on the scan and genetics was brought in again.

In one of the pictures from the MRI, you can see something in Patrick’s brain that looks like the shape of a tooth.  A molar tooth!

The Molar Tooth Sign

It’s NOT an actual tooth!!  The easiest way to describe it, is type of malformation in the brain that just LOOKS like a molar tooth, hence its name.

The molar tooth sign is a classic sign/symptom for Joubert Syndrome.

Joubert Syndrome is another rare, recessive syndrome that hasn’t been around very long, and they are still doing research to find out more about it.

Meckel Syndrome vs Joubert Syndrome

Both of these syndromes, as mentioned, are rare.  They are recessive as well, which means they don’t appear very often.

There is no history in either myself or Dave’s family of anything like either of these syndromes, but the genes are carried in the families and can present themselves whenever nature decides to.

*Let me just interject here, that every one of us carries thousands of bad genes!  Every one of us has a 25% chance of having a child with any of those thousands of ‘bad’ genes.  It also takes BOTH the sperm and the egg to be carrying those same genes for the syndrome or whatever to make itself known.  In other words, both the sperm and egg that created Patrick carried these particular genes.  If only one of them carried them, Patrick would likely just be a carrier and not have any issues at all.*

Research and information show both Meckel Syndrome and Joubert Syndrome ‘share’ some common genes!  And while Meckel Syndrome usually has a not so good mortality rate, Joubert’s is good!

There is continued testing being carried out for both these syndromes, and over the years, more is expected to be learned and found out about each.

The shocker from blood work taken earlier this year for genetics?  Now positive for one of the genes for Meckel Syndrome and negative for Joubert!

So what does this mean?

Patrick has the Molar Tooth Sign!  That is classic symptom for Joubert!  What do we tell doctors and everyone else who asks about this now?

The Answer is…

Patrick DOES have Meckel Syndrome!  And while so far the tests for Joubert say negative, he DOES have the classic symptom for Joubert!

Patrick has Meckel Syndrome AND Joubert symptoms!

That’s what we tell people now!

Did you get all that?  Please feel free to ask questions if you like.  It’s not the easier thing to understand for sure.

Let’s begin with where we left off; Patrick was going in for some tests and being admitted with the understanding that some procedures were going to be done.

For the sake of trying to get caught up on everything in a short time span, I will just be updating as an overview of what happened.

Patrick did end up having the upper end of one of his shunts replaced as it was blocked.  During the course of this surgery, another issue came about, in that when trying to put the bottom ends of his shunts back in his abdominal cavity, they had a difficult time on one side due to so much scar tissue on the inside of his abdomen.  When they finally thought they found a spot, a huge gush of fluid came pouring out!  There were able to catch most of it (enough to almost fill a coke can we’re told) and send it off to the lab for testing.  A nearby general surgeon was brought over to see if he would take a look inside Patrick’s abdomen to see if he could see where this fluid came from and if there was more anywhere.  He brought all his equipment, scopes etc over to Patrick’s OR room and did an exploratory basically.  He found nothing that might explain about this fluid.  He did locate and area that they could safely and easily re-insert his shunt and all was closed up and finished.

Patrick also did have a g-tube put in.  He had to have a ‘temporary’ tube in for the first 3 months till it healed, then was replaced with a ‘mickey’ which is replaced every 3-4 months now.  What a huge difference to his quality of life.  He’s been able to get his nutrition without it causing him to be any more tired than he already had been.  He has adapted well to it and asks to be hooked now.  What a trooper!

After a few weeks in hospital and getting used to the tube feeds and learning about it all, Patrick was able to go home in February, with a number of follow up appts.

Follow ups included:

Neurosurgery – usual follow up after surgery and admission

Nephrology – usual follow up for blood pressure and blood work to keep an eye on kidney function and potassium levels

Enteralfeeding – follow up for g-tube and any feeding issues

Dietition – make sure recipe for feeds was working for him, getting him all he needs to have and making sure it was balanced enough to as not to cause increases in his potassium etc…

Neurology – follow up for the seizure medication Patrick is on and how it’s working.  Since this time, we have been currently decreasing it and he is almost completely off it now!

A consult with Toronto Doctors at Sick Kids Hospital was put in as well with their plastics team for their thoughts on another cranial vault expansion .  That appointment was for Oct. 10^th, 2012.  (update later)

Over the course of the next few months with follow ups and blood work it was discovered Patrick’s blood sugars were dropping within 2hrs of a feed.  They should go up.  So endocrinology was brought in as well for follow up appts and blood work.

Well, there is a start…more to come…

Thanks for your patience and everyone’s support and love for Patrick and our family!! We truly are blessed to have so many wonderful people in our lives.

Thank you!

HUGS

Do you like these IEPs?

I do not like these IEPs
I do not like them, Jeeze Louise
We test, we check
We plan, we meet
But nothing ever seems complete.

Would you, could you
Like the form?

I do not like the form I see
Not page 1, not 2, or 3
Another change
A brand new box
I think we all
Have lost our rocks.

Could you all meet here or there?

We could not all meet here or there.
We cannot all fit anywhere.
Not in a room
Not in the hall
There seems to be no space at all.

Would you, could you meet again?

I cannot meet again next week
No lunch, no prep
Please hear me speak.
No, not at dusk. No, not at dawn
at 5 pm I should be gone.

Could you hear while all speak out?
Would you write the words they spout?

I could not hear, I would not write
This does not need to be a fight.
Sign here, date there,
Mark this, check that
Beware the students ad-vo-cat(e).

You do not like them
So you say
Try again! Try again!
And you may.

If you will let me be,
I will try again
You will see.

Say!

I almost like these IEPs
I think I’ll write 6003.
And I will practice day and night
Until they say
“You’ve got it right!”