Family – Page 6 – xangelle.com

Not like an elephant

My dad used to ask odd riddles. (I would never do that to my kids…) One of the riddles went like this: How do you carve an elephant out of a block of wood? The answer is: You take a chisel to a block of wood and knock off anything that doesn’t look like an elephant.

As dumb as that it, it’s relevant in raising a family in today’s world. You have to know what your family is supposed to “look like” and knock off stuff that doesn’t look like that. I guess its also like driving a car; after a while things just look like they are supposed to. You can’t really explain why you stop before going through a green light, but something just doesn’t fit the normal and then a car runs a red light right in front of you.

This happened today for me with my daughter. Angelica has fought cancer, and now she is fighting to get back her strength and mobility. She wants a car, she wants a job, and most of all she just wants to be normal (at least as ‘normal’ as one of my kids can be).

She is taking a class at school called ‘Planning’. In this class they discuss all kinds of relevant stuff, like what skills will actually make you successful in the real world and how to think critically and how to prepare for a career and how to apply for a job. This part is awesome!!!

In teaching the class, her teacher wants everything to be ‘real’. He wants them to make resumes with skills that they actually have, select a job from the local paper that they might actually apply for, write a cover letter for their tailored resume as if they were actually applying for that job, and then conduct a mock interview where you explain why you want the job and what your qualifications are. This part is awesome!!!

The line was crossed for me when her teacher (name blurred to protect the well-meaning) told her that she couldn’t apply to be a “mother’s helper” because she can’t run after kids on a playground if they start to run away. Again, this is all in the name of making this exercise ‘real’, and I kind of understand the point. This went back and forth a little bit, but today Angelica got this note:

An alarm went off inside me… Now that I have processed it, written a response, received an apologetic call back from the teacher, I know perfectly well why this is bad, but I wrote the email before even fully thinking it through… I just knew it didn’t “look like an elephant”. Here is my reply:

As per attached, I do not agree with this and I want it to stop immediately!

Angelica has fought cancer with every fiber of her being for over three years. It has been one of the most difficult things that I have seen a child go through. Angelica was very athletic and was talking about signing up for baseball before she was diagnosed with cancer. The most painful part of the treatment for Angelica was what it stole from her in terms of time and opportunity. Now she is in a place of working very hard to recover and we are constantly reinforcing for her that she can do anything.

In an attempt to make this job interview as real as possible, I believe that you have crossed a very sensitive and very real personal boundary. The facts of her “medical condition” have only been discussed at length with Mrs — and Mr —. By repeatedly questioning Angelica’s “mother’s helper” job application and telling her that she couldn’t do that job, you are 1) incorrect about her condition, 2) incorrect about what a mother’s helper job is, 3) acting in a manner that will be harmful to her recovery, and 4) breaking the spirit of my daughter.

Her condition is such that she should avoid running or doing major impact, but is completely capable of it if needs be. I don’t believe that its really her responsibility or requirement to provide you all the details of her condition to take this class. If she says that she can be a mother’s helper, then you are in no position to say otherwise.
We have employed a couple mother’s helpers in the past and it did not always include taking care of children. A mother’s helper may be required to do household chores so the mother (who is still in the home) can spend time with their child. A mother’s helper is not the same as a nanny as a nanny is left alone with the child and chores. If Angelica applied to be a mother’s helper to our family, and I knew what I know about her capabilities, I would hire her in a heartbeat.
Angelica needs motivation to do all the physio that she is required to do. Her motivation right now is that she wants to buy a car, and she needs a job to do that, and she is doing her physio as hard as possible so that she can get an actual job as soon as possible. By making her focus on limitations (that aren’t actually there) you are taking away her motivation.
Angelica, who holds her emotion in to her own detriment, has broken down in tears about this. She is getting the message from this process that she is not good enough, that she is broken, that she could never get a job. My daughter has the spirit of a fighter, and in fact she has fought through cancer to live. But it took a lot of effort on the part of us, her parents, school counselors, friends, neighbors and family to constantly encourage her to fight, to win. I did not tolerate negative reinforcement then, and I will not tolerate it now.

I believe that walking the kids through real world scenarios is VERY VERY good. I wish that I had been taught what it is to apply for and compete for a job when I was in school. I understand the motivation for making it real, but I ask you to step back from the “realism” in this area.

I was impressed when I read my own email. The teacher called me right away, immediately saw my point and has set out to amend the situation. I wouldn’t always jump in to fight for my kids, but there are times when I do jump right away and I can’t really explain why… I just know what my family is supposed to look like and I’ll knock off anything that doesn’t look like it.

When do you jump in and fight for your kids, or let them fight for themselves?

A record setting pace

When I was 20 years old (seems like half a lifetime ago) I ran in the Vancouver Sun Run 10K and had a time of about 42 minutes. I’m told that’s pretty good. My new employer has been entering a yearly corporate team to the Sun Run and I signed up to go.

When I signed up I had the idea in my head that I would try and beat my previous time which would require a significant amount of training from where I was(am). Regardless, when you sign up you are supposed to put in the time that you predict you will finish in, and I conservatively put in 46 minutes or something like that. This time effects your bib number, starting position and so on, as faster runners get to go first to prevent bottle-necking on the race course.

So I started running a few times a week. I had a goal, a date to aim for, and I was excited about getting back into running.

Then Patti decided to start an 8 week “Couch to 5K” program but didn’t want to run alone and asked if I would join her. I can’t put into words how quickly my goals changed. Before she even got the full question out of her mouth, I no longer cared at all about the Sun Run or my time. I immediately had a new goal; to be Patti’s running partner.

There are challenges that go along with this. For starters, I might be turning 40 this year, but I can still run at a decent speed without training and I can definitely run a full 10K without stopping, even if the time is a bit high. So my first challenge is to make Patti feel that she is not holding me back or cramping my style by getting me to run/walk/run through a fairly light 3k over 30 minutes. Also, I’m still signed up for the Sun Run and I still have a low bib number coming so I need to not be a total mess out there, so I need to fit in the occasional 10K as well, but the goal is now completely different.

Why? Why would I change my goal so fast? Typically ADHD people don’t like to change goals once they are set on something. On top of that I have wanted to beat my 42 minutes for 19 years and this is my first crack at it.

Because, Patti and I are better together. Patti is an amazing person. I don’t think I’m that bad of a person myself. Both of us have accomplished a decent amount on our own, we both have skills that are unique to us and we both have imperfections and problems. But when we do things together we rock! I’m not just saying that; we’re amazing…. Really!!!

OK, so in all honesty our weaknesses match our spouse’s strengths in an uncanny way and when we rely on each other’s strengths we are just… better.

Patti and I were talking about this the other night while we were running (actually I talked and Patti concentrated on breathing and managed a “yea” once in a while. She’s a good listener when she’s running….) We were BOTH talking about this the other night while out running and it came up that she feels that her blog only represents a half of her. Certainly there are things that we don’t share on a blog, this is after all a public forum and we share a lot, but we do choose to share some stuff and not other stuff. What she meant is that the readers of this blog only get her side of things, and you don’t get mine. Not that my opinions are all the different, but that sometimes my perspective is.

So we have decided that I will start contributing to the blog and not just as a guest blogger, but under my own name. Just to warn you, sometimes I’m all surface level, geeky, odd humor, and sometimes I’m deep and philosophical. Patti is generally somewhere in the middle all the time…. See we complement each other even there.

So as the title says, I’m running for a record setting pace. I’m not aiming to beat 42 minutes on a 10K; I am aiming at running more, farther, faster with Patti on whichever trail we happen to be on, as long as we are doing it together.

See you soon…

BTW: As you can see from the picture, my bib number for the run is 2955 which puts me in the yellow zone which is way too close to the front… but if I beat 50 minutes I’ll be thrilled (and a little surprised).

Tough days

It’s been a tough day today.

I showed up at music practice tonight sobbing and barely managed to scrape myself together enough to walk in only looking like I was half falling apart……bright puffy eyes and red nose.

Parenting special needs kids is not easy and some days are tougher than others. Today was a fairly normal day as far as days go but it was still tough.

The boys wake up moving at warp speed which means lots of fights, lots of meltdowns, lots of yelling and screaming and taunting, very little listening, very little “pause and think before you act” and just generally a whole lot of frustration. And that is all in between 7-8am. Fun! By that point I feel ready to strangle someone but I have hopefully already doled out the morning meds.

It takes about an hour to an hour & a half for the meds to kick in……so however it takes to get the meds into them……it’s still another hour or so until the effect starts to kick in. Cue a repeat of the previous very little/very a lot section of actions.

Around 9-9:30am, we start school and depending on the particular mood of the day, school could be finished in 2 hours or it could take all day. Today we were still working on homework at 3pm……which is an indication of how today went.

There is so much frustration from the boys because they want to be doing anything other than school and I feel like I’m constantly fighting each one of them over different things.

Sometimes, I feel strong enough to handle it and others (like recently), I don’t feel strong enough to handle it all.

I’ve been waffling back and forth about trying Siah in public school because it would be one less thing that I would have to do and fight with him over, spend hours and hours prepping and on the admin stuff. I might actually be able to clean my house or have/create/stick to a meal plan. Wouldn’t that be incredible?

But today he had a gymnastic class that just pushed me over the edge. He was made to sit out of the first half of the class for over 20 mins. Now, in his defence…..I believe the teacher forgot about him…..but I can’t even believe I typed that sentence up. I should not be defending a teacher for forgetting about my child or even for finding it easier to not have him in the class. The class is at 5pm. Meds have started to wear off by this point and unless you really love
him or have one on one time with him……by this post in the evening Siah can be a handful.

But it broke my heart to see him “cast aside” because he couldn’t behave. It was worse in that parents on either side of me were asking me what I was found to do about this as they found the treatment as unacceptable as I did.

I ended up talking to the teacher and surprise, surprise……I started crying. Yah! Just what some twenty something guy want a to deal with an emotional mother of a bratty kid. Yay me!

I can’t fathom sending him to school to have him treated like this. He spent over half the class in total sitting off to the side. The punishment was not effective. If you know ADHD, you will know that long, isolating punishments are rarely effective. And so what? What do I do? Continue to put him in a place that could be so good for him if he would learn? Or continue to put him in a situation where he is leaning to sit in “time outs”? Cause if they continue to put him off to the side….that’s what he will be learning, not how to act appropriately. Or do I pull him out of something that could be great for him.

Well, I managed to get myself together during music practise but driving home, I started to fall apart again.

It’s so tough. Parenting difficult children is so tough and today I feel like a failure. I feel very alone and very insecure. It’s a crappy place to be in. I’m really hoping that I wake up up and feel so much more positive in the morning. I’m REALLY hoping!

For Me, The Investement is Worth it

It’s Wednesday night and Angelica has Riding Therapy. Jon has been taking the two little boys with him when he takes Geli which gives me just over an hour to myself (sort of).

Geli’s been taking Therapeutic Horseback Riding Lessons since the summer. She LOVES it and it’s great exercise for her core and they are really working her quads which is one of the muscles that severely wasted away over the past 2 years.

First Day of School

I still have Jeremy and Xandra at home with me, but for this hour…..they fend for themselves.

I’ve been pounding out schoolwork for the two little boys on previous Wednesday’s, but I am taking the time tonight to type out an update on where the boys are doing with school.

Nature’s Stained Glass

Long story short……They are both doing INCREDIBLE.

We had an assessment today with their “teacher” who oversees me who is actually doing the “teaching”. It was not the most exciting meeting, but it validated the effort that I’m putting in which makes it worth it…..sort of.

This whole homeschooling thing that I’ve been doing. It’s a freaking full time job. Both boys definitely have multiple issues. Jeremy’s have been diagnosed (although I’m not sure of how accurate the diagnosis’ have been or if there should be another one.) Josiah’s have yet to be diagnosed, BUT he definitely has sensory issues and I’m pretty much 100% positive that he struggles with ADHD although a lesser form than Jeremy.

Teddy Bear Patterns

We have an appointment for Jeremy with the psychologist at the ADHD clinic at the Mental Health Unit at BC Children’s on Monday and I’ll be asking the psychologist what it will take to get Siah seen as a sibling.

L is for Leaves

Having said that….Josiah is LIGHT YEARS ahead of where Jeremy was at this point in his kindergarten career. Some of that can be attributed to not having as severe a case of ADHD as Jeremy but I also believe that being able to “cater” to his busy-ness and his particular learning style also contributes to it. I don’t believe that Siah is WAY smarter than Jeremy but that he has been given an advantage over Jeremy in many ways because of what Jeremy has gone through in previous school years. There are aspects of that, that make me sad, but there is nothing I can do about the past. I can only learn from it and move forward.

The White King of Egypt’s Crown

When I watch Siah sliding off his chair into a puddle on the floor as he chants his alphabet sounds, I am struck with a sobering thought and I wonder how much of the past month and a half of kindergarten he would have spent in the corner or on a time out chair or at the principals office. When he balks at using a pencil, preferring to use a pen because it “writes softer” (he has issues with the way the pencil “drags” on the paper)….I wonder how frustrated his teacher would have gotten with him for not wanting to write. It’s not that I fault the teacher, but there is no way that Siah would flourish and grow in the way that he’s been able to over the past month and a half.

Moments of Frustration

We start our mornings around 9am and we are typically finished for the day at noon. If Jeremy is having a particularly rough day, he might still need to do a few things after lunch, but most days he is finished by lunch time as well. Lest you wonder, he’s ahead……WAY AHEAD of where he should be in his lessons for the year AND…..he’s done more in the past month and a half than he would have done in 4 months at school AND…..the best part….he ACTUALLY KNOWS WHAT HE’S BEEN STUDYING AND WORKING ON.

He’s learning and even better….he’s SO EXCITED TO LEARN!

He can DO IT!!

The teacher is talking about taking him off of the “special needs” educational track and putting him on a normal education track…..and honestly, last year when she first brought that up….I was terrified…this year it’s not so scarey because I am seeing how much he has improved and in so many ways.

Cuniform Tablets

He still needs help with the “social” aspect of life. There is so much that he doesn’t “get” and it is in that area that I wonder if there should be a different or additional diagnosis. Fortunately, he is still working with an AMAZING Behaviour Therapist. Elizabeth McWilliams Hewitt has been a most incredible blessing to our lives. There are things that she’s explained in ways that make sense to ALL OF US and tips that she has shared that have made HUGE differences in the way that Jeremy is able to “handle” life and in the way that we are able to deal with him and to help him deal with the differences in the his life and in the way that we can understand what he is going through. We are so thankful to have her as a part of Jeremy’s team.

Brothers

We have had a full month and a half of school. We’ve crafted and created. We’ve printed and written. We’ve typed and painted. We’ve gone for nature walks. We’ve done PE. Jeremy is taking a Computers and Technology class at the TLA school. Siah is so close to reading. Judah LOVES to do exactly what Siah is doing and is so excited to be “coloring” as he calls it…..that’s all he thinks Siah is doing. Not learning, not dreading school, not getting in trouble for his wiggly bum….just coloring and cutting and gluing.

His TLA Avatar and apparently I need to take a better “grade 7” school picture.

Jeremy is getting crazy amazing marks and although I don’t care what his grades are, I LOVE seeing how proud he is of himself every time he scores another 100%.

It’s been a good year so far. It’s been a tough year. Teaching two boys with issues is tough. Teaching two boys with “ISSUES” that rub each other the wrong way….Siah needs to make noise and the noise flips Jeremy the crap right out…..on some days seems next to impossible and yet….it’s worth it.

Making Butter

I would love to have the boys in school. I’d love to be able to just enjoy Judah especially after the past couple of years we’ve been through. I’d love to have time to craft and sit and heck, sleep…..but, I’m choosing to look at this time as an investment. I’m investing into my boys and I can see the initial payoff…..I wonder how incredible the pay off will be as they continue to grow and mature.

Butter

I get the privilege of helping my boys to excel and succeed. Some days I wish I didn’t have to help so much or see it all so clearly and from such a close viewpoint, but I know this is worth it. In the very core of me, I know I’m doing the right thing for right now. I keep having to remind myself of that on VERY BAD DAYS (Yesterday was one!!!)

Ribs and Lungs

I have no idea how long we will continue to do this for. If you had asked me about homeschooling a few years ago, I’d have told you that you were insane….if fact, I think I said that to one of my friends…..for sure I thought it when my sister started homeschooling her girls and yet……right now, it’s what’s best for my boys.

Science Project

My house is messier than I’d like. I have next to no free time. I have zero energy by the time the evening rolls around…….but……my boys are succeeding in ways that I couldn’t have even imagined 2 years ago….and that is so incredible to me.

Printing and a Tiger

These pictures that are throughout this post are just some of the pics that I’ve taken from our many crafts and adventures throughout the past one and a half months. It’s been a busy but fun filled time and I’m excited to see where these amazing boys will be at the end of the year….at the end of this school year. You can see the rest of the pics if you want to, right here!

Details

Hello Friends,

We are in the final countdown of the last days of Angelica’s Treatment.

It’s so exciting….not counting today, it’s 5 days left. YAHOO!

Some of you may have heard and I’m so sorry if you have not, but we are celebrating on Sunday September 30th from 2-4pm at the cafeteria at Walnut Grove Secondary School.

You can let us know if you need directions, but we’d love to have you join us as we celebrate the very last day of Geli’s Treatment and the first day of the rest of her life…..

What an amazing day. We are so looking forward to it.

We had a HUGE day at the hospital yesterday and I’m still recovering from it all. We left our house at 9am and didn’t walk back in the door until 5:30pm. It was all good news and we are so looking forward to wrapping this phase of our life up and starting to move forward in a life without daily chemo. We are looking forward to building strength and regaining that which was lost…..to just moving forward instead of feeling stuck.

We’d love to have you join us.

We’ll have coffee and cake available so if you can, stop by, we’d love to see all of you who have supported us and helped to carry us through these past 2.5 years…..it’s been quite the journey and we are so thankful that you’ve been there along the way helping us to keep moving forward.

Let me know if you need more details…..look forward to seeing you.

Beach Days

On Monday morning, the kids and I decided to pack up and head out to the beach.

We threw together some food and grabbed our towels and blankets as well as the beach toys; jumped in the van and headed out to West Vancouver.

I love Ambleside Beach. Apart from the fact that I grew up there, its so easy to navigate with a hoard of children and gear in tow. You park and then walk across the driveway and onto the beach. It’s just right there. Which is SO nice when you are schlepping children and way to much stuff.

When we got there, it was gorgeous and sunny and EXTREMELY WINDY which made it also…..quite chilly. Which is not exactly what we were expecting.

I was SO THANKFUL that, at the last minute, I had grabbed my sweater. I would have been FREEZING without it.

The beach wasn’t packed, but neither was it empty. There was a HUGE number of half naked kids and about half as many completely wrapped up moms.

We laid the blankets down, the two little boys kicked a bucket load of sand onto the blankets and then took off to play. It was so nice to just sit and watch them play.

No worrying about them making noise or touching things that they shouldn’t. We are having some issues with the Strata in our complex and basically they are trying to impose a “children should be seen and not heard” policy which as you can imagine is not going over well with the parents in the complex….especially seeing as we do not live in an adult only complex. It’s made for a stressful spring/start to summer.

I’m praying for an amazing opportunity to be able to buy a “home” not a townhouse and on a piece of acreage would be even more incredible.

We hung out for a couple of hours and then……we decided to pack up and come home. It was just too windy to enjoy the beach. If the kids tried to play in the water they were frozen little popsicles because of the wind.

Jeremy even dug himself a huge hole/trench so that he could sit out of the wind.

After we ate lunch, the kids got popsicles from the concession stand and then we packed everything up and came home.

It was a fun adventure and one that we will do again….although hopefully not on such a cool windy day.

Once we got home the baby crashed hard. I love it when they play so hard that they pass out. He looks so little here. Hard to believe that he turned 2 on Sunday. The time goes by so fast.

Catching My Breath.

Things have been insane around here recently. I have had no time for myself as you may have noticed by the silence over here.

It was not something that I was intentional about but I have felt like my life was on speed.

working on schoolwork

I…..we, have not been in a good place and for the first time since….well, since before the new year and probably WAY before then even…..I feel like I can…..well, I feel like I can almost breathe. I have these moments where I can see that I should be breathing and yet, I feel like I am still holding my breath and I have to remind myself to let go of the breath that I am holding so that I can take another and another and another.

It has felt like things have been going down hill for a long time, but at the same time, I was trying so SO hard to carry on. Since the New Year and the whole BONE CRAP…..it has felt like things are going faster and faster down hill and that I could no longer even attempt to stand strong against it all. I have felt like I was being crushed under the weight of everything and at the same time…..I couldn’t be crushed because there was too much that still needed to be done; and so, wounded and broken I carried on.

we like to do school, too

At the end of last year we applied for the Disability Tax Credit for Jeremy regarding ADHD. In April we received a bit of money and made the decision to use ALL of it to get some help.

We interviewed a bunch of people and none of them really seemed “just right”. As we continued through the hiring process, I got discouraged. I started to think that maybe I was looking for something that I wasn’t going to find or that maybe I was expecting or hoping for too much. As a last resort, we contacted the church we are attending and asked the Young Adults Pastor if he knew of anyone who wanted or needed a job as a Mother’s Helper. He suggested someone and it turns out that there were two sisters that came for an interview and I couldn’t have asked for a more perfect duo. They are sharing the job and starting last Monday, I have help from 8:30am to 4:30pm and the two women are INCREDIBLE.

Who needs skateboards to play at the skateboard park?

They are sweet and responsible and loving and the best part……..my boys LOVE them. I am SO THANKFUL. This couldn’t have come at a better time because we have 5 of us in counseling right now and between all the appointments that we have been going to….I think I would be completely WIPED!!!!! if I were trying to do this all on my own, and with the two little boys always in tow.

I’m hoping to be able to have a little bit more “me” time. It would be so nice to not feel like I was ALWAYS behind on things, or to not feel like I was never able to catch up or stay on top of anything.

New pink glasses

I feel like I’m trying to catch up right now. I don’t even know if it’s possible and there’s a part of me that wants to just ignore everything in the past and just start fresh moving forward….and in some ways I’m doing that…but it still feels like I’m overwhelmed with everything that I’m carrying. Oh Well, I guess that’s just more for me to hash out in counseling. Fun!

my baby is getting so big

There is So much that I’ve wanted to share. But I’ve just not had the time nor the energy. Hopefully, I’ll have a bit more of both as the days and weeks carry on. I just want to thank each and everyone of you who has prayed for and encouraged and reached out to me and to us. I have had NO energy to “be a friend” to anyone at this point and this journey has felt like such a long and lonely journey and each time someone reaches out, it feels like a hug. Each time someone sends an e-mail, I feel encouraged or picked up. Each time, We get a message letting us know that you’re praying or thinking of us…it gives us a little bit more energy so we can pick ourselves up and carry on. I….WE are so grateful and thankful for everyone who is walking this journey along side us. Please know that although I still feel like I am in Survival Mode and barely scraping by, that I am SO incredibly thankful for each one of you.

Siah’s sand dude!

5 Cycles Left

Angelica has 5 cycles of chemo left until she is FINISHED.

September 30th is the day that she stops taking chemo. It seems SO FAR AWAY and yet…..we only have 5 more cycles of monthly chemo to go until that day comes. It’s pretty exciting to think that when the new school year starts, she will have less than a month of chemo left.

Today we headed in for a monthly chemo appointment. We also needed to meet with the Physiotherapist as well as get an X-ray of her left shoulder. Initially, we were going to be getting an ALL DAY infusion on a drug that would help with the pain that she is feeling in her knees, but we changed our minds on that particualr drug after meeting with the Orthopedic Surgeon last Thursday.

Let me back up…..basically, since the Dr’s Diagnosed bone death back in January we haven’t had a really GOOD appointment since then. We’ve had a number of appointments but all of them have been very emotional or full of bad or depressing news. We have tried to stay strong and positive, but with each appointment seeming worse and worse, it’s been so SO tough.

We had a BIG misunderstanding with the Rheumatologist back in the beginning of April and then another BIG meeting with our Oncologist in the middle of April and while it was better….things were still confusing and sounded so……so……..so dark and depressing and negative. It was suggested that we start one drug to help with the pain and we thought about it and planned to go ahead. The Dr sent us a bunch of articles to read. Some of the info was good and some was not so encouraging. Isn’t that how it going with most meds??? Anyhow, We were supposed to start that drug today. It was possible that it might give her bone and joint pain and well as a fever and flu like symptoms like aches, fever, chills and nausea….sounds fun, eh? And, it would have taken all day for it to run…..awesome!!!! Not!

We met with the Orthopedic Surgeon last Thursday and it was a GREAT meeting. He believes that Geli’s case is a mild case of bone death and that she is still in the healing process. He believes that she will get stronger and stronger and that the pain should lessen. He also mentioned that as she gets stronger, that she should also have more mobility as well. These were also very positive things. He mentioned that it is possible that she may not need joint replacements until she was 40 years old. While that is earlier than an average age for joint replacement, it is WAY BETTER than being in so much pain and discomfort that she would need it in the next two years…..He also suggested against the medicine that we were considering because among other things, it can make the bones brittle and more suceptable to fractures. As well, if there are negative side effects, those can possbly stick around for a long time…..a life time even and well….that would not really be cool. Would it?

Of course, this is all a natural, medical opinion and we are still praying for and hoping for miracles. Just going to the specialist felt good. We walked away from the appointment feeling very hopeful. And that is SUCH A GOOD THING!!!!

We go back to see him in the middle of June.

Today we had our regular monthly appointment and other than it being two straight hours of running around, it was a FABULOUS day and a GREAT appointment at the clinic. There was no traffic to start and we made it in with enough time that we weren’t rushing in from the parking lot. We went into the clinic, and Geli had to mask up as she’s had a nasty virus that’s been making it’s rounds through the kids. We were sent to the back of the clinic which is the long term appointments, but we stopped to talk with our nurse because we were not staying for the extra long drug. While they tried to sort out the confusion, they sent us down to Radiology to get the x-ray that the orthopedic surgeon had ordered for Geli’s shoulder. Geli changed into one of those cute little gowns that tie up in the back and we were to be up next when our nurse came and told us that physio was waiting for us. So we left Radiology and headed down to the PT department. They also felt that both her elbow that seems to be locked and her shoulder that is difficult to move are both from muscle tightness as opposed to being unable to move because of problems with the bones. This is a very good thing. Geli was given a few exercises to work on and we have an appointment that co-insides with her next chemo appointment.

I am hoping that with one month of focused effort that she will start to see some amazing and encouraging results in her physical body. We will be doing a lot of physio over this month and so if you think of it, you could pray that she will stay encouraged to keep on going and that she will see some results sooner rather than later.

After we met with the Physiotherapist, we headed back to the oncology clinic to get her blood drawn so that we could get her counts, as well as get her Chemo drug for this month. After that, we headed BACK DOWN to Radiology to finally get her shoulder x-ray-ed. The results from that will go to the Orthopedic Surgeon and then we will see him in the middle of June. When we finished with the x-ray, we headed BACK to Oncology to meet with Geli’s Oncologist.

It was a completely uneventful appointment. All of Geli’s stats look good. Her white counts are elevated a bit, but that could easily be explained by the virus that she is fighting off. She checked Geli out, increased one of her oral chemo drugs by just a tiny bit and sent us on our way.

All of that happened within 2 hours…….it was a FABULOUS day!

We have just recently made a few changes within our family and house and I’m hoping that those changes will have a more positive effect on all of us. I’ll hopefully be back tomorrow with an update about what’s going on with us……

Moments to Breathe

A couple of weekends ago, we were gifted with the opportunity to stay in a cabin down at Birch Bay.

We weren’t sure what to expect, but the thought of “just getting away” from everything was huge and so we threw 1 change of clothes, a set of pyjamas and our toiletries into bags. We threw some bedding into the van, grabbed our passports and headed over the line.

all packed in the van

We left our house later than we would have liked, and as a result arrived later than we would have liked. We also had to stop and pick up a few groceries once we hit the States. I am SO thankful that Jon had planned up a rough menu for us as my head was just not screwed on right and it took everything I had to just get us ready and even when he came home from work……I still wasn’t “ready” for us to go.

I find that aspect of all of this to be one of the more frustrating things. I just can’t keep things straight in my mind right now. I’m too exhausted. I’m missing things and other thigns are slipping in between the cracks and in a lot of ways, it ends up costing our family. the fact that I can’t organize things like I used to is costing us….it’s costs us time and money and energy and adds stress. I HATE that I feel like I’m adding to the overall burden. But, I’ve reached my max….almost 2 years in and I’ve realized that i very definitely do have a “limit”. I cannot do it all. That alone is humbling and depressing and so very VERY frustrating. It’s not that I thought I COULD do it all, but I know that I can handle a lot…..and knowing that I’ve reached my limit……*big sigh*….it’s tough!

Anyone who comes has a big family, knows that “vacation” has a very loose interpretation of the word. It’s more like a change of pace or change of scenery for the parents. There is still much to co-ordinate, and meals to make and clean up from. Meds to dispense. Kids to put to bed….and hopefully, if we are very blessed….a small bit of rest to be had.

We arrived at the cabin and unloaded everything. The kids were SO excited to be there. They immediately set off exploring the cabin and the property; and we were so warmly greeted by the neighbors. It was so nice.

We made assigned the kids rooms and made up beds and dispersed bags to the appropriate rooms and finally got the kids in their pyjamas and settled and then Jon and I headed to sleep. In spite of the busy-ness of arriving…..the place felt peaceful. I could hear the waves crashing and could smell the wet sea air. It’s a good thing that Jon and I went to sleep as soon ans we could because the boys were up bright and early.

I think Jeremy was the first up….he was the most excited out of all of us to be there. He was alomst quivering with excitement.

The kids occupied themselves while Jon and I prepared breakfast.

Judah found these Duplo blocks and spent a ton of time building “legos” with them. It was so cute to see him play like this. We actually pulled out our own Duplo blocks once we got home and he has spent many happy hours playing with the box of Duplo.

After breakfast, we headed on down to the beach…..

It was still pretty cold at 9am in the morning, but the boys were determined to be outside, at the water’s edge. Judah was thrilled to be getting dirty. He’s a true boy.

The boys walked up and down the beach front….

I think that we must have re-located half the rocks on the beach out a few yards…

It was so nice to see everyone relaxing and smiling and just forgetting about everything for a while.

We skipped rocks and found crabs and watched excitedly and with great anticipation for the tide to go out.

Siah got a bit cocky and what do you don’t see, is the next picture where he is running for the shore with his boots full of freezing cold ocean water. He waded out far enough and a wave came in strong enough that it washed right over the edge of his gumboots.

Judah was So excited to be out splashing int he water too. He was initially cautious and then his excitement and curiosity go the better of him and in the end, he ended up falling into the water despite our repeated warnings and got soaked…..

Geli found a path out to a sand bank and loved the feel of the cool sand in between her toes. My kids have always been water bugs. I think it must be in their genes….they are so attracted to the water and seem to thrive in any water environment.

By this point, we were getting chilly, between the cold water and the cold wind…BRRRRR! SO we headed back inside to get a bit warmed up. We played some games and ate some popcorn and just relaxed.

Jon even got in a short nap…

Here is Geli goofing around with a water bottle. The bottles boasted that they used 50% less plastic and well…it certainly seemed so as the bottles were so flimsy.

After a while we realized that the tide had gone WAY out and had left some amazing looking tidal pools that were just begging to be explored.

The birds were out and the sun was shining and it looked amazing.

It was so incredibly beautiful out there. There were miles and miles of beauty just begging to be photographed.

We found the coolest looking shells and weird shrimp looking things, crabs and other sea creatures, including sand dollars.

Jeremy had noticed a fire pit back up in the yard and was desperate to roast some marshmallows. We headed back up and the kids made a huge mess of themselves.

I don’t know how you get marshmallow spread out over your face from your eyebrows to your chin….it’s a skill, I tell you.

There were SO Many great photo opportunities. If you are interested in checking out my WAY TOO MANY photos….click on this link.

It was an amazing time and I was so grateful for the opportunity to get away. What an absolute blessing. It was exactly what I needed exactly when I needed it. It was a little slice of heaven in our crazy lives.

Thank you! THANK you! THANK YOU!!!! for this incredible opportunity. We are so blessed.

The Ups and Down of Life

I feel so……so……so caught up inside myself.

There is so much going on and I don’t know where or how to unpack it all. I had a phone chat with our social worker from BC Children’s yesterday and kind of fell apart on her.

I’m tired. I want some help for the kids (and myself if I’m being honest) and “the help” (therapy type help) available, is at BC Children’s….an hour away from here. (We have no extended medical to help cover the expenses for other help and so we’d be paying out of pocket for other help, which we may just have to do…..)

There is a sibling support group that is just about to start, but…..it’s on Thursday afternoon’s for an hour and a half FOR THE NEXT 8 WEEKS.

That’s not really very helpful. If we missed traffic (which would be a miracle – we’d be in traffic for at least one way), we would be driving for 2 hours to go to a meeting for 1.5 hours. And I’m not sure what Geli, I, Siah and Judah would do while the older 3 were in the session. Then we’d be leaving at dinner time (and sitting in that lovely traffic I mentioned) all the while hoping that the baby wouldn’t fall asleep in the van so that he wouldn’t be up until midnight. There would be dinner to figure out and homework to work around and well….it’s just more of a problem than a help…..

I am already running below empty and I can’t fathom adding 8 weeks of that stress into our lives….so where does that leave us………?

Not in a great place, that’s for sure.

I know that we need to get beyond “this time” and that things will look different in a year from now and hopefully things will be easier but I am so tired and worn out, I’m not sure what shape I’ll be in, in a year from now. We’ve been looking forward to “this season changing” for what feels like a very long time and it’s all seeming so very surreal and even unattainable at very low times. We have to believe that things are not always going to be this tough. We are not looking forward to the future as a “magical time of amazing-ness” but we are trying to hold onto HOPE with what little strength we have left, but sometimes, even that feels so very difficult to do.

Our social worker asked me what things I could take off my plate so that I wasn’t so overwhelmed and to be honest…..I have no idea. I’m already doing the least amount of housekeeping that I can and still have us be functional. And that right there…..is so tough to deal with. I like a clean, neat and tidy house. I feel like I’m drowning….not even like I’m treading water anymore, but that I’m sinking deeper and deeper under. I have no time or energy to keep on top of all that it takes to keep our family running smoothly and my “coping mechanism” is to “fill another box” with the crap that gets piled up on my counters and then take it down to my bedroom.

It’s definitely not a cool way to deal with things. I think I have 6 boxes downstairs with “crap” that needs to be sorted through. It’s all I can do to stay on top of my laundry and well….besides the fact that I have the worlds smallest laundry room and 7 people’s clothes and towels and linen won’t fit in it…..we just need the clothes to wear. The boys only have about 3 pairs of pants each and depending on how messy they are we could plow through 2 or even all 3 of them in a day. NOT COOL, boys! NOT cool!

Obviously we have to eat and trying to feed a family of 7 economically, while eating a gluten and dairy free diet….well, it’s extremely challenging and sometimes I just wish that we didn’t have to eat.

A significant portion of my time is spent homeschooling Jeremy and breaking up fights and squabbles between the two little boys. A few people have asked me if that’s something that I should off load and just send him back to school. Maybe even a different or new one……to me, this is not even an option. For the first time in his life, Jeremy is EXCELLING in school. He hasn’t gotten a mark that’s been less than an “A” for 2 months now. He feels smarter. He’s ACTUALLY retaining the information that he’s processing. If he doesn’t LOVE school, he at the very least enjoys it, now. As much prep work as it is for me…..and let me tell you, teaching ONE CHILD has a significant amount of prep work and time spent overseeing what he is doing…(I can’t fathom teaching 30+ kids with more than one of them with Learning Differences or other social issues)…..this is something that I believe is CRITICAL right now. I firmly believe with all my heart that Jeremy is learning valuable LIFE SKILLS that will impact him for the rest of his life. To cut this time short, would be devastating, in my opinion. Even moving him to a new school…..he doesn’t “YET” have the skills needed to make a change, and I believe that he would end up in the same position that he was in….behind, feeling stupid and bullied……

So basically, I get up in the morning…….. I sort of teach school. I try to care for my little boys. I attempt to feed and clothe the family. I clean, and it is an extremely loose interpretation of the word, the house and then it’s bedtime…..

For “ME” time….I “try” to work out 3 times a week and while that’s a good thing…I feel like it’s an hour and a half of hellish torture that I enjoy once it’s finished.

Regardless……something has to change, I’m at a breaking point….I’ve been thinking about getting someone in to help out for a few hours a week….maybe twice a week….to help with the little boys and maybe some housework….I dunno….I’m not sure where to find someone, or how exactly to go about it all, but I have been thinking about it….so….that’s a start, right?

Jon and I are missing each other….it’s been so long since we’ve had any time to just “be” together and that’s tough. Even our evenings are crazy. The boys have been particularly needy over the past couple of weeks and haven’t been settling until after 9pm even though we’re starting the bedtime routine at 7:30pm….I dunno if they’ve been feeding off the extra stress……or what the issue is? Whatever it is….it’s not cool!

We did, however, get the chance to get away as a family. Last weekend, we were able to go to a cabin down at Birch Bay for two nights and it was a wonderful time away. It wasn’t so much of a rest….as it was a change. A chance to get away from the house and feeling a need to clean and tidy. The kids played. Nothing “could” or “had” to be done….probably the biggest downfall was that we wanted to pick up a few clothes while we were down there, but again…..shopping (or pretty much doing anything) with 5 kids is…..um…..interesting…..and we didn’t get done what we had hoped and that left some of the family feeling like they were disappointed. We should have just gone down and not hoped to pick up a few things….that would have at least not set us up to fail…..

that’s Jeremy in the bottom left of the picture

I have a TON of pics from our time away and I’ll share some of them in the next post. It really was a beautiful place and right on the beach…….like RIGHT ON the beach. The smell of the air, the sound of the waves, the seagulls crying…….it was amazing. Truly, truly amazing. I love the beach. It really is a “Happy” place for me. We are SO THANKFUL to the family that made it possible for us to get away. It was INCREDIBLE! SO, SO INCREDIBLE!

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