Category: Life

I just don’t know……

What a day it’s been today and it’s only 12:45pm……CRAZY!

Right now, Jeremy and Josiah are outside for a little “Daily Physical Activity”, Judah is sleeping on the couch and I’m taking a moment for myself.

I kept Jeremy home from school today because I figured he needed a “Mental Health Day”.  He’s been having some social difficulties at school and I’m concerned about him.  Because of the severity of ADHD, there is a lot of “social conduct” that Jeremy has not learned.  There are so many things that he just doesn’t “get” and it’s so hard because between him not understanding what is socially acceptable and unacceptable and him being “different” it can get him into social situations that look a lot like bullying.  Not where he is bullying, but where he is being bullied.

I was talking with Jon yesterday about this and just comparing it to rape.  Obviously, that is a bad comparison, but when it comes down to it….no woman “asks or deserves” to be raped and no child “asks or deserves” to be bullied…..regardless of what they do or do not do.

Jeremy is different.  I will be the first to acknowledge that.  Jeremy often makes awkward social choices without understanding how others will perceive him.  He is not aware of how his actions come across or how they are inappropriate.  And yet, the way he is currently being treated is not okay.  Something has to change.

I’m not sure what the right thing to do is.  I don’t want him to “quit”.  I don’t want him to “give up”.  This is not something that he should just “suck up” and “get over”.  There are more and more kids committing suicide over bullying these days and while I don’t believe that is something that I need to worry about with Jeremy…..I don’t ever want it to get to the place where he might ever contemplate that.  I want to advocate for him before it ever got anywhere close to that.

At the beginning of the year, Jeremy was so excited about school.  He had such a positive outlook on school.  He was excited about his teacher.  He was excited because we were getting his meds tweaked.  He was just really, really excited about school in general.  So much has changed over the last 3 months.  At this point, Jeremy wakes up in the morning and typically the first thing he says to me is that he’s not going to school.  He continues to inform me that he’s not going to school until the moment I drop him off at school.  And then from the minute he walks in the door, he lets me know that he hates school and that he’s not going back the next day…..He’s called me twice within the last week during the day to let me know that he’s stressed out and needs to come home.  I don’t think that he’s being bullied the entire time that he’s at school, but I do think that the stress is wearing on him and making it difficult to focus and concentrate.

He called me yesterday crying and last night he fell apart.  And so…..I told him that he could have a Mental Health day. He calmed a bit after that.

He is aware that he is going back to school tomorrow and today has not just been a free for all.  I have contemplated home schooling him before.  I have just as many pros as cons for doing it and for not doing it.  It’s a tough call and ultimately I want to be able to do what is best for Jeremy while taking our family into consideration.

I see that there are things that are so beneficial for example….he’s got a science test coming up and we were studying for that.  I was able to help him find the key points and we were able to talk through some of the issues that he didn’t fully understand.  I had the ability to walk him through something one on one….and that I can see as totally beneficial.  The down side to that, is that I had the two little boys going NUTS on me while I tried to do this.  And it was a bit of a gong show.  Now, it’s not something that we’ve done before and so I believe that they could learn to do something to entertain themselves which I would like them to do, but there is that factor of them being around to take into the mix. We were also able to play some classical music at the same time and Jeremy does seem to respond to that.  He finds it easier to focus when there is classical music on…not something that they can do as easily in the classroom.

After the science, we worked on his spelling for a bit and I was able to test him orally while he walked around and moved.  He got 14 out of 20 and seemed to really like the fact that he was allowed to move and pace.  I made him print out the 6 words that he got wrong while standing at our kitchen counter…..on a wobble board.  He does so much better when he can move and I think that it was a bonus.

After that, he played with both his brothers for ten minutes while I tidied up the kitchen.  As much as that may seem silly…typically they fight when they play together and my rule was 10 minutes of playing with no fighting.  Learning how to co-operate and problem solve while incorporating three very different age groups into the same activity.  There was only one small squabble and Jeremy handled it very well….learning leadership….

After that we had an art period where we painted.  We talked about how colors can be transparent or opaque and we started to paint some large garden rocks to prep them to become ladybugs.  We talked about doing jobs with excellence especially if you are interested in selling them….he is…and how people want to buy things that are done with excellence.  There is a higher value on well made items.

We cleaned up from our art time and then had lunch.  I loved that Jeremy was able to eat a balanced and healthy lunch.  I took the baby and nursed him to sleep and then shooshed the two boys outside for half an hour of Daily Physical Activity.

They are playing amazingly right now.  Typically all I hear from them is fighting and screaming….so this is a bit of a Christmas miracle.  I don’t know if the fact that everything has been broken down into small chunks of time has made a difference or what, but I like it.

When they come inside, I’ve got some math worksheets for Jeremy to do and then we are going to do 10 minutes of house tidying.  After that I’m going to have them help me with making some cookies and we are going to talk about fractions and multiplication and division wile learning some home ec skills.

I’m also going to have Jeremy write up a journal entry about his day today.

There are so many good aspects of today and yet…I’m still not sure.  What is the right thing to do?  Would homeschooling him for half a year and then sending him back to school be the best thing for him?  Would changing schools help?  Would just sticking it out, be the best thing?  What is the best thing for him?  Is there even a “best thing” or do we just make a choice and go with it and believe that whatever we choose will work?

What do we do about the whole social skills thing?  Obviously I could work on it with him at home, but it that the best thing??? Is it better to have an entire school to muddle through these things with?  Is he really going to grow up to be in a position where he is in a huge group of people all the time or is there a greater likelihood that he winds up in a more solitary job?  Does he need  peace for his own mental good and what gives him the greatest amount of peace?  I don’t know all the answers to my questions and that’s tough on me.

I like to know.  I like to have a plan and for this…..I’m unsure.  I don’t want to romanticize something and yet at the same time, i don’t want to pass something by that could be the best thing for him.  Or it could be the worst thing for him….I just don’t know.

I just don’t know.

And so for now….I just keep encouraging him to forgive. I keep encouraging him to keep his heart soft and to not harden it.  I keep encouraging him to try and try and try again.

 

 

 

 

This and That and The Other Thing

I’m not sure why but the baby has started to take a nap on the couch. What I mean is that if I nurse him, he will fall asleep and then if I put him on the couch….he will stay asleep. If I put him into his crib….not so much. This makes no sense to me but if I can have a few minutes without someone whining and clinging to my pants legs…..then I’m just going to go with it.

Sleeping

~*~

I’m EXHAUSTED. I’ve been on the go since November the 13th because I’ve had one thing or another planned. First I was trying to get ready for the Craft Fair, and then I needed to get ready for a Christmas Party/Cookie Swap and I also was feeling quite a bit of stress about doing the whole Hospital/Chemo thing by myself….

Today is more or less a down day except I have to pile ALL the kids into the car and take Geli and Jeremy to see our Family Dr. later this afternoon. It always feels stressful when I have to take all of the kids somewhere especially when there is a fairly good opportunity to act out or misbehave.

~*~

I’m trying to figure out what we are going to do about Christmas this year. With Jon being laid off from work and the lag in getting his next paycheck, things are tight. I’m trying to figure out what I can make – as in homemade gifts – but there is always this guilt that the kids are going to be disappointed. I know that in the grand scheme of things that life and love and togetherness are the most important, but as parents we want to give our children special things, right? I have been talking with the kids about “giving” as opposed to receiving and I do know that things will work out okay. I just seem to do really well when I have a plan; when I know exactly what I’m going to do or what to expect….I’m still trying to figure things out and to be able to do it without feeling frazzled or stressed.

~*~

I’m really trying to eliminate stressors from my life. I want to be able to enjoy life and to not be stressing about too many things on my plate or about all the things that I could or should be doing. It’s not so easy to find the balance and yet I’m really working on it. I’m trying to live within my capabilities and to be able to really enjoy “living” life and not just existing. I’m trying to be present for my family and with my kids. This is also not as easy as it sounds like it could be and yet…I believe it’s doable. I’m also trying to embrace the season that I’m in.

I’m a mom. I have two little boys. I remember how much work it was when I had three little ones (Geli, Xani and Jeremy) because I’m right back in the thick of those early days. Siah is 4 and Judah is 1 and it’s not an easy phase. What I have going for me is that I know that it won’t last forever and that I want to really enjoy this time with them. It’s tough. It’s exhausting. It’s messy. There is a lot of whining and diaper changing and wiping runny noses and cleaning and tidying and doing the same things (like rescuing a child from on top of the table, building block towers, or reading the same 2 books) over and over and over again. There is little sleep and even less “me” time, and yet, when I look at these little boys….at all of my kids, I’m so thrilled that they are mine and I’m awed with the responsibility of raising them. I believe in them and will try my best to raise them to be amazing men and women. It’s a lot of work, but they are worth every bit of time and energy.

~*~

We had our day at the hospital yesterday and for whatever reason, the Oncology clinic was PACKED with kids and parents. At one point every seat was taken, inside and outside of the clinic and there were a TON of parents and kids standing. This meant that the 1 hour appt took 4 hours. Which SUCKS SO BAD! And, the whole deal with Angelica and the itching that she’s been experiencing…..nothing. They don’t believe that it has anything to do with the chemo or anything Oncology related and so we are just to Monitor it. That’s not so cool as far as I’m concerned. I don’t know what to do exactly and I’m just hoping that things will get better and not worse. I’m hoping that Geli will “test the waters” so to speak, tonight and we will see whether or not things are improving, holding steady or getting worse.

Aside from the itching, Angelica is doing okay. She is on the mend, but it taking longer than is normal or expected…..Normal is really not a good term for it….because really, what is normal?

~*~

I’d love it if you’d check out my shop. There are some great products, in there.

Simple Choices

I think the favorite products right now are tied between:

– the Lotion Bar – EVERYONE who has tried it has RAVED about it.
– the Calm Room Spray – it can be sprayed in kids bedrooms to help settle them down
– the Breathe Cream – to help with congestion, due to coughs and colds
– the Refresh Cream – to help with headaches, digestive issues, sore muscles and for a general “pick-me-up”

And everyone seems to LOVE the lip balms….the peppermint seems to be the winner right now.

~*~

I’m hoping to be able to make a gluten-free Gingerbread house with the kids in the next few weeks. We’ve been talking about making small ones. I hope it works out. You can get the MOST AMAZING gingerbread recipe over at Gluten-Free Girl’s website. I made a batch which makes around 72 cookies and my kids have DEVOURED them. I have less than 2 dozen left….they are just that good.

Gingerbread

~*~

Do you have a favorite Christmas Cookie?

I love Whipped Shortbread, and those Gingerbread Cookies up above.

And, the baby just woke up and so I’m done for now…..

Community

I had the opportunity this morning to speak with an amazing group of ladies at a church here in Langley.

This church has supported us in so many incredible ways and I was so thankful for the opportunity to “give back” and to share some of our story and some of my story.

I had 15 minutes to share on community and our walk through life with others.

I used 3 key points that I shared from.

– Shame and Fear will trap us and keep us isolated and feeling alone.
– Vulnerability and Authenticity are the keys to building relationship and community
– Knowing your True Worth is the key to allowing yourself to be vulnerable in front of others.

I shared on how in the past, my insecurities (read that as Shame and Fear) kept me from wanting to be in relationship with other people. About 7 years ago, We went to this amazing church out in Abbotsford that challenged that belief that I had about myself. They challenged me to see myself the way that God sees me, to see that I am worth being accepted and loved and supported and encouraged. Slowly I started to believe that I was worth more than I was believing about myself. I wanted to live in relationship and community with people and to not be isolated.

In my own personal journey, I had taken many steps forward away from Shame and Fear and Isolation and then, last June, Angelica was diagnosed with Cancer. My world shrunk down and for a year I was in basically a forced isolation within my house. I realized that I didn’t like the isolation. Somewhere along my journey, I had gotten some emotional healing and grown to the point that I liked being in community and it took a forced isolation to really cement it home in my life that I WANT TO LIVE IN COMMUNITY AND RELATIONSHIP and not in isolation.

During the past year, I realized that I could not handle the pressure and stress of what we were going through alone and after fighting against shame and fear…..I reached outside of myself. I was vulnerable and I asked for help.

The response was incredible and overwhelming.

We received enough help that I felt like I could finally breathe again. It was overwhelming and quite literally a life saver.

Without starting to grasp a hold of the concept that I was worth being accepted and love and supported….if I hadn’t started to realize that I was worthy of all of those things….I would have never been able to ask for help. I would have never been able to open up and say that I was less than perfect. I would never have been able to admit that couldn’t handle it all on my own. But in being vulnerable and open about myself and our situation…..I received even more than I had asked for.

In our society today, we are so busy and there are so many opportunities to hide behind our insecurities and fears and as a result, be, or at the very least “feel” alone. I also believe that we as people are craving opportunities to connect and to live within community.

Being open, transparent, vulnerable allows others into our lives and in turn, we are then a part of their lives…..building community, building relationships. I’ve found that being open encourages others to also be open which sets the stage for deeper and more meaningful relationships. Vulnerability is not always easy, but it is SO WORTH IT!

You are worth being loved.
You are worth being accepted.
You are worth being supported.
You are worth being encouraged.
You have so much value and worth.

It was amazing to actually meet this group of ladies, to see them face to face and to be able to thank them for all their support and love.

I’m not sure, but I think I was within my 15 minute time frame……I hope! The Music Team sang a fabulous song when I was finished talking and the whole morning just came together so well.

I am SO thankful to be apart of this community. The Community of Walnut Grove, the Alex Hope elementary School and North Langley Community Church…..has supported and blessed us so much and cannot thank you enough.

I’m so grateful to be apart of this amazing community!

A New Day

Jon started his new job today. He left the house at 7:30 this morning because he has no idea how long it’s going to take him to get there in rush hour traffic and he has to be there at 9am.

This is a HUGE change for us and while a part of me thinks that I’m a lot more ready for something like this to happen in our family (as opposed to a year or even 6 months ago), there another part of me that has no idea how this is going to work.

Obviously we will do what we have to do in order to make it through, but this is the first time in a very long time (approximately 8 years) that Jon will be rocking the “daily grind”,3 outside of the house, on a Monday to Friday, 9-5 kinda deal with an hour of commuting on either side of the day.

This past year has really taken a toll of me and while I used to believe that I could do anything and everything….I now feel like I have no choice in the matter and somehow I just have to survive. I often hope that in the very act of “surviving” that I will be able to heal enough to the point where I feel strong again. At the same time, I wonder if that’s even a possibility. You know how if you break your leg and get it set properly, put a cast on it, rest and let it heal; it will heal better and faster (and almost as good as before) than if you just carry on limping and walking on your broken leg, doing what you’ve got to do. Sure it might heal eventually, but it may heal crookedly or you may not get full strength and/or mobility out of it, but the intensity of the pain might not be as severe as it was as first….

I kinda feel like that second scenario is playing out in my life. I feel a bit broken and tired and like there is no option to re-set, rest and heal and I’m just hoping and praying it will all be okay eventually. I DO feel stronger than before, but I’m so acutely aware of my fragility, compared to the strength that I feel I used to have and that’s……well, that’s tough!

I’m sure that the kids and I will fall into a routine of sorts, and I know that families do this all the time, but right now it feels a bit daunting.

culley (3 of 211)

I’m so THANKFUL that Jon was able to get work. In faith, I’m confident that it will work out and that we will be okay. According to feelings, I’m not so sure.

Magnets And Gas

So there I was…..doing pretty good. I posted every day for a while and then…BAM! Life kinda took over!

But, It’s all okay NOW!

Last Sunday we had some people over for lunch and one person brought their super cool magnetic necklace, block, toy thingy. This thing is so cool.

It was getting passed around and looked at and played with and somehow 5 of the little tiny magnetic balls got lost. I managed to find 1 of them which left 4……I’m pretty good at Math, aren’t I?

I wasn’t too worried because I had swept every square inch of my floor and I didn’t figure that Judah had been around when it was getting passed around and so there was no way that he had gotten into or near any of these tiny – BUT STRONG – magnets.

Everyone left and I said that I’d keep a look out for the other 4 magnetic balls and carried on my way.

Monday was just a normal day and Tuesday looked like it was shaping up to be more of the same…..until the afternoon. I went to change Judah’s diaper and when I did……something looked oddly shiny and most definitely out of place. Yup, It was one of those magnetic balls.

I was a bit shocked and super upset because if there was one…what’s to say there wasn’t more than one and how would I know that two magnets hadn’t stuck together inside of his intestines and were going to cause some major problems….if you know me at all, I went straight to the “worse case scenario”. It was pretty sad. I couldn’t fathom a million hour ER visit and so we called our family Dr to see if they could possibly fit us in. They couldn’t so then we called the walk in clinic and seeing as he was happy and had no fever and didn’t seem to be in any discomfort, they said to bring him in first thing in the morning and they’d check him out and send us for an X-ray. Of course they gave us the whole “fever, blood, blah, blah, blah speech – do not pass go, do not collect $200, go directly to the ER” spiel.

Long story short, on Wednesday morning, we hit the clinic at 8am….hit the X-ray facility at 9:am and were back at home at 10:30am waiting to either hear or not to hear…in this case, no news was good news.

As soon as I got home, Siah met me in the garage complaining about a sick tummy. This was weird because he was fine when I left. Over the next hour, he got progressively worse to the point where he was sitting on the floor crying in pain. When asked where it hurt, he kept pointing at the lower right side of his abdomen…..heck, between cancer, ADHD, ODD, No Gluten, No Dairy, No Soy and now possibly a Magnetic Gut…..heck, lets just throw some appendicitis in there as well.

Jon took him up to the clinic and fortunately the wait time was only about half an hour. After about 15 minutes, Siah burped about 4 times, and then “miraculously” his tummy ache went away.

And just to be safe, Jon did stay to see the Dr. The appointment went a little something like this…

Dr: Nice to see you guys again. This little guy didn’t swallow any magnets, did he?

Jon: No, and he burped about 15 minutes ago and then everything stopped hurting…..so sorry for wasting your time. My son has gas.

Dr: Well, it’s always good to get it checked out anyway.

but you all know he was thinking…..”stupid parents, bringing their kids in because of a little gas.”

And then basically, my week just kind of blew up after that.

In all seriousness, I feel a bit traumatized about the whole hospital thing. When we found the magnet in Judah’s diaper, all I could think of was which hospital should we go to? And what about Jon’s new job and how would I handle caring for the kids by myself and would it be better to go to Children’s or to be closer to home….and what might they have to do to Judah if there were magnets stuck inside of him…..and how would we deal with the whole Gluten Free thing and well, it was not fun….

The whole hospital thing with Geli has not played nice with my emotions and I hate being confronted with how “unstable” I feel over the possibility of a hospital visit. Not Cool, cancer. NOT COOL!

The rest of the week didn’t have any medical craziness in it, but we did pull apart Jeremy’s room, the girls closet, the garage, the boys room, the TV room, ALL (as in every single toy that we own) the toys, and our storage closet. It was quite the undertaking and yet…..we did it!

This is the boy’s room that is right beside ours, down stairs in the basement. We currently have all three of the boys sleeping in this room. Fun times, there! (oh, the wall border and color….original to the house. not my choice, just haven’t changed it yet, but I did want to mention that I do NOT like the decor…carry on, please)

We made two dump runs and put away 15 separate bins of toys. No, they are not all HUGE boxes of toys, but all the toys we own are separated out into their own groupings…..Hot Wheels, Mr Potato Head, Playmobile, Little People, Infant Toys, Wooden Blocks, Tinker Toys….you get my drift.

We’ve put the majority of them away and I think that will cut down on the mess in the rooms. That’s the idea any way. We’ll see how well it plays out over the next couple of months.

Here is Jeremy’s upstairs room…

(I have NO Idea why it’s so stinking small. I thought I used the same camera on my phone, but obviously not…sorry about the mini view…just squint and then it should be all good! and again with the house’s previous occupants decor….lovely, ain’t it?)

The carpet is a bit thrashed but it’s the original carpeting from 15+ years ago and it just needs to get replaced, so other than a quick vacuum….I’m not even trying to clean that sucker.

Probably an even bigger miracle than just cleaning things out…was that we also managed to finish off each day of cleaning with a totally clean house.

Do you ever start to clean something and then find that the job is too big and you end up with a mess at the end of things that you pulled out, but have no current home and so you end up with a big a mess just in a different location in your house. Yah, it was my goal to not have that happen. YAY US!

Part of my push to get this done was because Jon starts his new job tomorrow morning and it was my hope that if we cleared things out and got rid of a bunch of junk that it would make it easier to keep things clean. Again, I’m really hoping that’s the case. Only time will tell, right?!?

What are your tricks for keeping a clean house? Do you have any tips to share?

A Whole New Level of Craziness

Things have felt a bit intense over here recently and I feel like I’m going non-stop from the moment I crawl my OH-SO-TIRED self out of bed in the morning, until the moment I flop into bed at night.

Now to be completely honest, I shut down for the evening around 8:30-9:00pm on a “normal” night and then Jon and I sit on the couch and watch a show or two and then I do the whole “flopping into bed” thing.

So I’m not on the go ALL DAY, but boy it sure feels like it. And it’s been worse over the past few weeks because my babies have been sick. Josiah brought home some lovely virus from the Cruise ship (YAH OVER A MONTH AGO) and he was sick for a week-ish and then I got a sore throat and cough and then Judah picked it up and then just as he was getting better…..both Judah and Siah managed to pick up another bug from somewhere.

And those two little boys have been CRANKY!

And Judah’s not sleeping (not at night or during the day) and he’s wheezing quite a bit and I’m using Eucalyptus Cream on his chest 4 times a day and using a Castor Oil pack on him twice a day and trying some homeopathic medicine twice a day away from the Eucalyptus….and between his clinging and whining…..when I sit down at the end of the day….I’m so DONE!

Unless I’m holding him…..this is typically what Judah has looked like for the past week or so….It’s about as awesome as it looks….blurry photo and all.

Whiny

He seems to be a bit better today than he was yesterday and I’m hoping that tonight is better than last night….Hello 3:30am until 5:30am – it was nice seeing you!

Jon has spent the greater part of this week Job Hunting and it seems like his efforts have paid off. He should have the contract in his hands as of Monday, but he has been contracted to do a great job for the next three months. Hopefully, there will be more work at the end of the three months, regardless, I know that we will be okay. He should start on Monday November the 14th. Yah!

I’ve been working on making a bit of grocery money in my spare time (HA HA HA HA!) and I have a few things put up in an Etsy shop…with a few more things to come….I just need to take pictures of the products.

If you see something that you like, you are more than welcome to contact me personally and we can work out payment details….I know that some people don’t like to pay for things online and that’s totally cool. I understand!

If you’re are interested in checking it out, please click here. I’ll be adding new things over the next few days so be sure to check back.

I have planned to “MAKE” time tomorrow to sit down and pound out the rest of our vacation. I can’t believe it’s taken so long to get to it. Life has just been that crazy busy for us! It’s mostly good, but I’m a big fan of quiet, peaceful, SLOW times. The business gets to me after a while. I crave the down times and lately they have been elusive.

Another Blow

I’ve had a few days to process and …..we were not prepared for this.

As of October 31st, Jon has been laid off.

The church has not been doing well financially for a while and at this point cannot afford two pastors and so, we are now out of a job.

I felt okay for the first part of this week, and I think that was shock. As the week as progressed, it has slowly begun to sink in…..we have no job! No employment! No Income!

This past year has not been kind to us and we are not in a position financially to absorb any time without a paycheck!

I believe with all my heart that we will make it through this. By that I mean that we will all have each other and that we will love and that we will live and yet……..I have no idea what this means for us practically and realistically.

Will be have to sell our house? Without a job we can’t buy another one, but without a job, we can’t pay for this one either. I know that it sounds rather dramatic, but I’m feeling rather traumatized right now.

I feel like I’m floundering and I don’t know where to go or what to do…..I’m trying to figure out what we can sell and what we can live without and how I can make some money. Even if Jon were to start his business up again, there is no way that he can just instantly make enough to support us…..

I just want to run away.

I know that there is never good timing for this, but this….this is just really, really difficult. Especially after coming on top of this past year.

I’m so tired. I want to sleep and yet, when I lay down….I can’t. Too much to think about and yet I feel so helpless…so hopeless. It’s been a hard day….a tough week…..

A Starting Point….some thoughts on ADHD

We left our house at 8:30am yesterday morning and arrived at the hospital at 10:30am.

Yup, it took 2 hours to get into town and there was no accident that we heard of or could find on any of the radio stations or Twitter (I love @news1130radio).

We called into the Clinic just after 9am to let them know that we hadn’t even reached the Bridge yet. I was thinking that we might be approx. 10 minutes late – not HALF AN HOUR!

IMG_2605

Unfortunately, this cut into our appointment time and while the Dr that we met with was super nice and did take some extra time, our appointment was a bit rushed and we didn’t get the full time allotted to us.

We are still processing all the information that we received in our appointment but for the most part it was good.

This psychologist once again confirmed, after a short conversation with Jeremy, that he is NOT Autistic. Not that we were harboring hopes that he is, but she just let us know that there is no way. He is just too interested in being a part of the world around him.

We talked briefly through his history and through his meds that he’s currently on and then because of the lack of time, she cut to the chase…..

She wants to try Jeremy on two different medicines than the current cocktail that he’s been on. After listening to us talk about some of the things that Jeremy struggles with as an individual and that our family struggles with as a whole, she doesn’t believe that his meds have been helping him hardly at all.

According to her and to the Psychologist who assessed him for Autism, it should be a night and day difference.

The problem that we’ve been having is with what our interpretation of what Night and Day difference means.

See, if Jeremy struggles with Impulsivity, Hyperactivity, Inattentiveness, has problems reading & recognizing social cues, and organization along with a host of other things…..once he gets on the correct balance of meds…..those things should mostly disappear and he should appear and act as a fairly typical child.

I didn’t even know that was possible!

For the past 4 years, we’ve been giving Jeremy medicine to “help” with the ADHD and if all of those problems were rated out of scale of 1-10 with 1 being non-existant and 10 being the worst….without meds, Jeremy probably rates a solid 8 or 9 out of 10. On meds, we might be hitting a 4 out of 10. A normal boy might fall in the 1-2 out of 10 range.

If you knew/know what it’s like to live with an un-medicated Jeremy, and then to see him with the meds in his system….the 4 out of 10 sounds and looks pretty amazing! COMPARATIVELY speaking!

But then understand that for the past 10 years, we’ve been living with and loving on and working with a child who lives and breathes ENERGY! EVERY! WAKING! MOMENT! and quite honestly….because he has trouble sleeping….even the nights are scarey. When he was little and we lived in Abbotsford, he would wake up and roam the house and there was one night that he even opened the door to go outside. Now, fortunately we had an alarm system and so we caught him, but my point is that even during the night we had to be vigilant and we couldn’t let our guards down for even a minute.

That’s a whole lot of stress on a family….on a parent!

Living with a child who has special needs is not easy. We don’t go out very often. We don’t visit places or people very often and when we do, its with a great deal of stress on my part. There have been too many people in our past who have openly judged him and us for his behavior or lack of understanding of appropriate social expectations. ADHD is not something that most people just “understand” unless they know or have someone with ADHD in their lives or unless they’ve taken the time to understand. Too often it’s seen as a “bad child” or “bad parenting”. If people knew how hard we work with Jeremy and recognized how much effort we put in to this there might be less judgment or at the very least more understanding. One HUGELY DIFFICULT thing in all of this is that we put a HUGE amount of effort in and to see him “in action” you might not think that we’ve done anything. We may look like hugely lenient parents and we are anything but…..can you imagine where he would be if we didn’t work as hard as we do. It’s tough to feel like all your efforts don’t mean very much! To have a child with ADD/ADHD is really tough.

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To explain……I don’t like to go places where Jeremy may do things that are inappropriate. That’s pretty much EVERYWHERE! I know that he’s going to act inappropriately in any number of situations or ways and I try, with everything in me, to “stay on top of him“, to be aware of where he is 100% of the time. I try to be aware of who’s time he is monopolizing, of what he’s saying, and what actions he is doing that others might find offensive…..because my reality has been that of judgement.

He looks like a normal child. He can talk (boy can he talk)! He can reason! He loves to share jokes and talk about his creative ideas….he just doesn’t know what’s acceptable and what’s not and he can’t even tell that you might not be interested. For example, He might try to tickle a small child and instead of doing it once or twice and seeing the baby smile and then stopping…..he might do it 10 or 15 times, until the parent is trying to protect their child from him….and even then…he might not clue in that the parent is uncomfortable, unless they actually say something like, “Please stop that. The Baby isn’t finding that funny any more and I would like you to stop.” Typically what happens in a situation like that, is that the parent laughs nervously, attempts to indicate in a subtle way that they don’t think the baby is enjoying the attention. Jeremy will the indicate that for sure they are because they are laughing. The parent will try again, subtly to get him to stop….by this point any normal person in Jeremy’s position would be embarrassed because the parent is obviously not happy but Jeremy is still going because he doesn’t catch the subtleties of the situation and finally the parent gets upset and rudely tells Jeremy to back off and then we either hear about the situation first hand OR what’s worse, is when we hear about how strange (or awful) our child is through another person that the parent talked with……

That’s just one example….but that has been our life….

So I go anywhere and everywhere, strung out and stressed out and wired as tight as a spring even before we go anywhere because it’s not about the possibility of Jeremy doing something inappropriate….that’s a given….it’s just how badly the situation will go and how understanding or judgmental the people on the other end will be.

According to the ADHD physcologist, Jeremy is ADHD (Attention Deficit Hyperactive Disorder) and is also dealing with ODD (Oppositional Defiant Disorder). When she said ODD, Jon and I were both taken back, but she explained that it’s not that’s he’s openly defiant in an aggressive, destructive manner. He does, however, question and challenge almost everything, and in that manner….he meets the criteria for the oppositional part of that diagnosis….

I don’t believe that all these letters (ADD/ADHD/ODD or any others) DEFINE Jeremy but that they give us a starting point to be able to talk with other professionals in a knowledgeable manner. It’s a starting point. It’s a common ground that we can meet together at to discuss how Jeremy can move forward in a successful way.

I will be honest and say that the meds stress me out some. If you know me….you know that I’d rather do things all naturally. Not that in my life right now that’s even a possibility (what with the CHEMOTHERAPY and all) but I don’t like to use chemical’s in my house. I don’t like to use chemical’s on our bodies and I certainly don’t like to put chemicals into our bodies…. I struggled with medicating Jeremy in the first place. It’s not really gotten any easier over the past 4 years.

The Dr has prescribed Jeremy two meds. One is called Vyvanse and the other is Risperidone.

The Risperidone is being used to help with anxiety, disruptive behavior and eating disorders. There is a huge amount of anxiety that comes with not knowing what to expect from certain situations or people, and from not being able to focus your thoughts…especially when it’s expected of you. When your brain is jumping around from thought to thought to thought and your behavior is off because you keep jumping from activity to activity…well that disruptive behavior also can bring stress with it. One other problem is that often a stimulant has a negative effect on your appetite. As a result, Jeremy has been hovering around 60 pounds for the last 3-4 years. This past summer we took him off his ADD meds and as a result he gained about 5 pounds and at some points in the summer was actually solidly 65 pounds, but once we started back on the stimulants this fall…he lost 2-3 pounds. It sucks. One of the side effects of this drug is weight gain…and while some people might consider that a negative side effect….we believe that having a few extra pounds on his frame will help Jeremy to feel a bit better. To show you the difference….Our 1 year old is just over 30 pounds and our 4 year old is just at 50 pounds….Jeremy is 10 years old and about 62 pounds…..he just doesn’t weigh enough to be healthy!

The Vyvanse is a stimulant. If you’re not familiar with ADD/ADHD, the front part of your brain is basically the “Conductor” that tells the rest of your brain what to do….it needs the chemical dopamine to be able to function well and properly. For people without ADD/ADHD, your bodies produce the correct amount of dopamine and the “Conductor” keeps everything organized and running smoothly and as a result, you can go about your day without feeling frantic or stressed and without “jumping from thought to thought to thought“. If you don’t have enough dopamine, then your “Conductor” doesn’t function very well and depending on how much or how little dopamine you produce, you may be more or less organized or hyper or able to focus your thoughts. Having a stimulant kicks the “Conductor” into gear (much like having a morning coffee, also a stimulant) and Jeremy is able to settle down and to be able to focus a lot more.

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It was tough to walk into the Mental Health Building and I’m coming to grips with the fact that a child of mine is in need of Mental Health Services to be able to be a successful person. There is so much negative stigma attached to Mental Health Issues and while I’m not out to crusade for Mental Health…I am definitely out to crusade and champion for my son….but the two are tied together, aren’t they?

There are so many people out there that need help. It shouldn’t be embarrassing to need help. The goal is to be able to live an amazing life and to be able to function well in society and if you require some help to be able to do that…..then so be it.

This is not to say that it’s easy to be walking this road, but I want the best for Jeremy and I will do whatever it takes to help him to be successful. I believe that we are on the right path…..a tough path, but the right path for him.

The alternative……to allow him to needlessly struggle for the rest of his life and end up feeling stupid or dumb or insecure – NOT ACCEPTABLE! This is not something we can “discipline” out of him. Yes, structure is good and learning about choices and their consequences is imperative. Learning to grow and learn from our mistakes the best we can, is so important…..but it would be so UNLOVING of me to not help Jeremy in the way that he needs help. I wouldn’t discipline my child if they were diabetic in the hopes the they would start producing insulin and so neither will I neglect the fact that his brain requires a little extra help to be able to function well.

And so here we are…..I’m eager to see how this new round of meds will help….I’m hoping that this might be the key to unlock this child of mine from the confines of his own brain. Time will tell but I’m hopeful!

Added to say: I just want to recognize those people out there who do love Jeremy unconditionally and who champion him and accept him regardless of his challenges……I am so grateful and thankful to you for accepting and loving my boy almost as much as I do. We couldn’t have survived these last 10 years without you.

Day Two……and a half.

If the rash on Geli’s back and thigh showed up on Sunday night then we are on day 2 and a half of this stupid cycle.

After she was admitted on Monday they started her on an anti-viral mediciation that is used to treat Shingles. Typically if a child gets a virus there is not too much that they can do other than just let the virus run it’s course, but with this particular virus….the one responsible for Chicken Pox….they can give a course of the drug, Acyclovir. Right now she is on an IV medicine, but can switch to an oral med if her body heals up quickly.

Homework

Doing Homework after school on Monday

And that is what they’ve done. She in on a 7 day treatment plan and basically they are waiting for the rash to blister up and then start to crust over…..disgusting, eh? But, that is what happens and so that is what we are looking forward to.

The rash started out not too badly on Sunday night and Monday but by Tuesday morning it was worse. One good thing though….the actual “blisters” within the rash were really tiny. It’s pretty nasty looking, but I think that she is starting to get better now. She has not had too much pain. On Sunday night and Monday she said that there was pain where the rash was at about a level 2 out of 10 and that there were times where it would be “shooting pain” and that shooting pain was at about a 4 out of 10. The worst pain was when someone would touch the rash and in order to get a sample to “test” they had to do a scraping….yah and the first sample didn’t have enough to get a good test and so they had to do it a second time. Sucks, eh?

Short Nap

Short Nap in the Stroller

Yesterday she said that it maybe hurt a little bit more, but for the most part it was okay. This morning it doesn’t really hurt at all and when the resident came in to see Geli, she was pleased to see that some of the rash has already started to scab over which is earlier than they would have expected.

Bed Time

He just crashed on Monday night

Thank you so much for your prayers and encouragement and support. It means so much to us.

Here are a few things to pray about….

We’d love to see Geli (and Jon) be healthy enough to come home by the weekend.
We are still praying the little boys don’t get Chicken Pox.
We are hoping that Geli will be able to catch up on all the school work that she’s missing this week without feeling overwhelmed.

Standing

So Proud that he climbed up on the stool by himself

As much as this is frustrating, I’m trying to look at the positive side of things. While in the hospital, Geli has been able to have the Physio Therapists come in and look at her and work with her and they will continue to do so every day that she is in and once she leaves, they will be able to be in contact with a Physio Therapist out here and to be able to communicate with them exactly what Geli needs as most of her issues are as a result of the chemotherapy. Some of the drugs actually damage the nerves and it can take some time before the nerves heal. Some of the drugs cause muscle damage and that can also take a while before the toxicity flushes out of her and her muscles are able to recover and rebuild. And on top of that there is muscle atrophy, just from lack of use…..

Van Actually In the Garage

It actually fits in the garage now! Thanks, Momma!

This is such a tough road to walk out but at least now we have a “sort of” “somewhat” plan moving forward. On top of that Geli was able to hear that all this physical crap is “normal” for someone who has gone through what she’s been through and that it will take her probably 6 months to recover from the damage that the chemo has wreaked on her system. It’s so good to hear that this is all a part of the journey.

I mean, it’s horrifying to go through this and yet there is a certain level of comfort in knowing that this is part of the process. It’s a horrible HORRIBLE process, but she will come through it.

Recycling

4 Boxes and 2 bags of recycling after the big clean up

And so we carry on. The kids at home are doing okay. I’m doing okay. I’m tired. Even more tired than usual, but possibly less tired than earlier this year and so that’s a good thing.

Monday was a tough day for me and I’m so thankful that my Momma came over and spent the day with me and then she slept over and was around for the morning on Tuesday. She helped me to get my garage cleaned out from all the camping crap that we just “dumped” in our garage in our efforts to unpack the camper at warp speed at 10pm the night we came home.

Signs your child is a Climber

Signs that your child is a climber.

And now I can actually park our van in there which is a HUGE HELP as we had been parking it out on the road outside our townhouse complex. Now I don’t have to schlepp the diaper bags and kids and other assorted crap out to the van when I want to leave….I can just huck all that stuff in from the comfort our our own garage. YAH!!!

I still want to share about our time away up at the lake and also about Jeremy’s official diagnosis. Lets just say that the last half of the summer was not uneventful.

Night time Wind Down

Down time for me, before bed

Currently, the baby is sleeping and has been sleeping for just over an hour. I am shocked and amazed and and fully expecting him to wake up any minute as he NEVER sleeps this long. Mind you when you half wake up and won’t settle from 11:45pm until 12:20am and then are up again at 2am and at 4 am and at 6am and then up for the day at 7am……you’d think that you might be slightly tired, no???

Well, I’ve got to get going and the battery on my laptop is about dead, so with that….I’m off.

Oh, one more thing…Geli reads the blogs and comments when she’s in the hospital so if you have a quick hello or a cute joke or a funny story, I know that she’d appreciate it. She’s a little bored and she’s not allowed to leave her room unless she wears a mask and heads right outside. They’ve got her in isolation to protect any other kids with compromised immune systems……and isolation….is not as cool as you might think it could be.

Thanks again….YOU ARE AMAZING and WE APPRECIATE YOU!

Not as Planned

Today is not going exactly as planned.

Jon has just taken Angelica into BC Children’s Hospital (as of 9:30am, Monday morning.)

This has left me a bit shocked and I am really praying that Xandra and Jeremy handle the news better than I have. (I’ve already been crying and angry and upset and shocked and so confused and frustrated and really REALLY PISSED!)

Last night around 8pm Angelica came down to the kitchen to show me a rash that was in a stripe and started at the middle of her back and wrapped around hip and down onto her thigh. It was quite angry looking and some of the welts…..well, they weren’t weeping, but they looked close to it….

We called into the hospital and told them that we’d given her benadryl and put some hydrocortisone on the rash and they said that this didn’t sound like a complication of her chemo or the meds she was on and that we’d done the right thing and that was it.

So we sent her to bed.

Things have been a tough recently with Angelica because her body is so fragile and “broken down” from the past year of treatment. Her muscles have atrophied some and she has grown so on top of weaker smaller muscles they are also stretched and she hurts all the time. She walks like an old lady and…..and….well, she hates it all. She hates being in pain. She hates that shes not strong enough to just do “normal” things. And to top it all off….our insurance doesn’t cover her going to see a kinesiologist – which would be a way better treatment for her than Physiotherapy. It’s all so frustrating….

Yesterday we had a huge conversation with her (that involved a lot of tears) about her BELIEVING that she will get better. It has felt like she’s unsure about whether or not she’ll get better and be able to just be normal and strong when it’s been so long that she’s been hurting and feeling sick and weak and unable to just do the things that you and I take for granted.

She finally got to the place where she could say, with some conviction, that she believes that she will get better, get stronger, get healthier……

And then this rash shows up….

And then we have to call the school and have her paged to the office to be picked up…

And when she gets into the car, she has a bag packed for a possible extended hospital stay…

And this is all happening on the first “normal” day of her grade 9 school year….

And this is all happening after she stands and believes that she will get better…..

And this is all happening 2 weeks before we are supposed to leave for Angelica’s “Wish trip”….

And I’m a bit in shock about it all….

I want to believe that it’s going to be nothing and we’ll see them home in a few hours, but I’m scared to hope for the best and to be let down.

Jon and I had planned to spend a “down day” today on his day off. Cleaning up our grarage (which is still loaded with crap from our camping trip) and just spending some much needed time together….and instead we are gearing up for Anti-Viral’s or Antibiotics and Extended Hospital Stays or Who knows…..

Please pray.

Pray that Angelica will he healthy. That the two little boys will not get chicken pox from this. That Jon and Geli will be able to come home. That this won’t affect her Wish Trip. Just please pray!

I can do this…I have to do this. But I really don’t want to.

It sucks.

It sucks for her.
It sucks for me.
It sucks for all of us.

It just sucks!