July 2011 – xangelle.com

A Moment To Breathe….

Jon sent me to Starbucks to get away from the house and kids for an hour or so on Saturday morning and while I avoided writing anything for the first hour, I figured that I should at least try to work out some of the crap that is banging around inside of me……..

I’m sitting in Starbucks feeling like I should at the very least attempt to put my thoughts down onto paper.

I’ve been so all over the place recently and it’s frustrating me.

I want to be able to talk about how I’m feeling and why, but every time I think about what I want to say it all comes across whiney and needy and I hate that.

The church that Jon works for is going through a tough patch and he’s not gotten paid in the last month and while we’ve managed to scrape up some funds from small tech jobs here and there……it’s only just been barely enough to cover the bills AND he’s been crazy busy trying to juggle everything.

I have been SO FRIED from this past year and I was really REALLY hoping that I’d get the summer to be able to rest and recuperate and instead of having a slower paced life and more time with Jon….I’ve had more heaped on me and less time with him…..that part sounds like whining – I know…..but I love Jon…I love being with Jon….I love talking with him and working things out with him. We work so well together as a team…and this past year has stressed and strained us so much! We are okay! We are dealing with “ALL THIS”, but I miss him so badly and I desperately wish that we had some time with each other….but it’s not really happening right now.

And now….this whole post has gotten de-railed for me because I feel bad for whining about my problems and issues when there are people out there who would give anything to be in my shoes…..

I guess it shouldn’t be de-railed because I still have a ton of other issues in my life, and I’m not really sure who would want to trade for those…

I guess what I’m saying is that no one’s life is perfect and I’d give grace to someone else who was complaining about their life and the tough things that they were going through and so why shouldn’t I expect that others would treat me the same way?

I guess this all goes back to m not wanting to bother people….I struggle with that so much. I don’t want to talk about how tough my life is when I know that others are struggling with their lives and yet, why am I okay with them having issues and talking about it?

I dunno. Any thoughts?

Another thing that is weighing heavy on me is the whole Autism/Aspergers thing with Jeremy. I’m terrified of not getting a diagnosis and yet when going through this process – you must come face to face with all the negative aspects of this “syndrome” or “disorder” and well…..it’s pretty negative.

To have to list down on paper all the areas that your child struggles with, to have to admit that it’s pretty bad……to see what is considered “normal” or “neuro-typical” and to see that your child is not even anywhere close that that ideal……. When, over the past 10 years, you’ve come up with coping mechanisms and put measures into play to structure your lives so that you can pre-empt the negative aspects of this “disorder” but then to realize that it’s “not normal” to have to live like that…its tough!

What’s even harder is when your child is desperate to be around people and yet they don’t realize that their actions make people uncomfortable……..and aside from explaining to people (most of whom don’t care or understand or care to understand) that your son has……..has what???? He’s not been officially diagnosed and then I’m right back at the whole, “I’m terrified that he’s not going to get diagnosed and we’re going to have to do all of “THIS” by ourselves” and I know that at this exact moment I don’t have all the answers that we need to help him be the most successful person that he could become…….it just about destroys me!

On top of that, I’ve been noticing that Siah is displaying some of the symptoms of being on the Autistic Spectrum…..it’s difficult to get him to look you in the eye. He is very literal. He doesn’t do a lot of pretend play. He has melt downs when things aren’t exactly as he expects them to be (I’m not just talking about typical 3 year old behaviour)….He is less understanding of social situations than “normal” kids…..and although he doesn’t seem to struggle as badly as Jeremy does….he’s only 3! This means that he’s not in a lot of the same social situations that we see Jeremy struggling in.

We were supposed to get a call in July to book an appointment in August for Jeremy and I’ve not heard anything yet. So I did call in to our case worker on Friday, but…..she only works on Tuesdays and Wednesday’s and so I’ve got to wait until Tuesday before I hear back from her……GAH! I’m so sick of waiting.

I really wanted to get this dealt with BEFORE Jeremy went back to school so that he could get started on the right foot and not be struggling from behind……..I’m still hoping that we are still on track for an August Appointment for Jeremy.

Well, After all of that…..I’m outta time. I’ve got to head home back to the masses. I’m just gonna post this for tomorrow and hope that if it comes across poorly, that you’ll all just have grace for me…..well, cause if you don’t, I’ll just cry. I might just cry anyway!

GAH! I don’t really feel like I’ve worked anything out inside of myself and I hate that……

I do believe that I’ll be okay….that we’ll be okay but I’m tired! I’m tired of feeling like I’m fighting for everything……I just want a moment…..a moment where I’m not struggling or fighting. I just want a moment to breathe…..

On a New York Monday….

We woke up at 7:30am and went next door to EuroPan for breakfast. I didn’t sleep too good the night before. My foot felt okay, but still hurt from all of the walking and standing that I had to do at the airport the day before.

This is me trying to get a photo while we were driving past….and that’s why it’s only half a picture

We met in the lobby of the hotel around 8 o’clock, piled onto the bus and headed out to the Empire State Building.

We got our own buses for everywhere we went. The Empire State Building has 102 floors total. We just went up the 86th Floor Observatory.

We looked around the Observatory and then went back inside and went down to the 80th floor where the gift shop is. I picked up some souvenirs there for my family. Then we went to the Skyride which is basically a moving chair and a movie but makes you think you are looking out of a helicopter. You see all the different tourist attractions around New York. They still include the Twin Towers because they were a part of New York and they don’t want them to be forgotten.

Taken from the 86th floor Observatory

We went back to the main floor, piled back on the bus and went to Mickey’s Mantle which is a restaurant owned by a guy who likes baseball. There we were fed what I like to think of as a family style buffet, where they brought a bunch of food out in large quantities.

After that we were gonna go for a carriage ride, but it ended up getting too hot for the horses. So instead we went back to the hotel (our rooms were on either of two floors, 37 and 39, and there was a suite on floor 42 that was kinda like a common room area where there were TVs and board games and cards and couches and we could use our computers I later found out.) At first I went to my room and read while I iced me ankle, but then I got bored and went to the suite, where I played cheat, and won, then Scrabble, and won by like at least double everyone else. Then we had to clean up fast and head back to the lobby to go to a Chinese restaurant that I din’t catch the name of.

An interesting thing I saw when I was there was; there are McDonald’s EVERYWHERE!!! Like one on every block.

There were some pretty interesting signs in New York!

At the Chinese place we had another family style buffet type meal, then walked a block or two down the street to the Blue Man Group.

It was so AMAZING!!!

OK, so a few years ago in Abbotsford, in Elementary school, there was a group of guys that came to our school, they had all these tubes and bicycle wheels and tons of stuff that you’d find in a junk yard. And they’d found a way to use these things to make music. The Blue Man Group was like that only like 100 times better, and they found a way to add colour and to make it look kind of techno and add, like, a mime-ness to it, the Blue Men didn’t talk or make noise themselves, they used the tubes and pipes and things. They got the audience to go up, and they gave out paintings that they made right then, and near the end they had rolls of toilet paper attached to the roof and they got the audience to throw it foreword so it looked like really really long streamers while they used strobe lights, it looked SO SO SO COOL!!!!!

When the show was over we got pictures with the Blue Men, and I bought a t-shirt and a Blue Man CD to take home.

Then we went back to the hotel where we had to go straight to our rooms, it was like, 11pm, and get ready for bed. Me and my roommate, Mia, watched some TV, and ended up actually going to sleep around 1/4 to 1, and that was my first day at New York.

To see the rest of the pictures from Monday, click here!

Lynn Headwaters

There are adventures that we’ve had that I don’t want to forget about and so in between the posts about New York, I’ll be sharing some of our recent adventures…..if I don’t, then I’ll get too far behind and when that happens, then I don’t even want to post about them…but the New York posts are coming…I promise!!!!

Last Saturday, before we headed out to the airport to pick up Geli…..Jon and the boys and I headed into North Vancouver for an adventure.

We had thought about going to Lynn Canyon, but I didn’t think we’d be able to navigate the trails with the stroller and I didn’t feel like carrying 30lbs of Judah around and so we went to where there were trails…

Just before we hit the trails, I grabbed Jeremy in for a quick squish, this way there is at least some photographic evidence that I am in fact on this particular adventure.

This is an “in motion” photo…..these little boys are ALWAYS MOVING! We had to park in the first overflow parking lot as the parking lot was full…..so we hiked up the road a little till we got to the headwater trails…

We stopped and had a bathroom break before we headed out because a certain little boy has a bladder the size of a…….well, I was going to say pea, but somehow that just doesn’t sound proper and so lets ust say that he ALWAYS has to go and just leave it at that…

While we waited for the big boys to finish up the paperwork, Siah was showing me how he was gonna go all ninja on any bears that he saw….

We crossed the little bridge and the boys were so excited, Jon had to hold them back from flinging themselves into the rushing water below….okay, well not quite, but we both felt a little stressed at how excited they were and how big those gaps were in the “fence”…

We walked up the path and turned right…..we really had no plan and we were mostly killing time while letting the boys run “wild” out in the bushes where they really can’t “wreck” anything…..and so we took our time and climbed on top of the rocks and took pictures of them doing anything and everything….

We walked down the path a bit more and came to this cement tube and before we could say or do anything, Josiah cimbed feet first into and slide right through and out the other end….it’s not a big tube but he fit – thankfully – and didn’t get stuck!!!! He was a little dirtier than we had planned and we still had to go and get Geli….so we told him…no more exploring like that…..if you look very carefully, you can see his little face peering up from the bottom of the tube.

Judah wasn’t really sure why he had to stay in the buggy. He really , Really, REALLY (with a lot of screechiness and general upsetedness) let us know that he really wanted to get down and play in the dirt too!

Jeremy showing us that he is the “king of the world”….

I really, love BC…..I love the trees and the woods and……well, it’s JUST! SO! BEAUTIFUL!

We did let Judah get out while the older boys were “exploring” in the trees. He really liked the rocks. He’s in a bit of a throwing stage right now…it’s fun…sometimes!

When it was time to move on, this was about how happy Judah was that he had to get back into the buggy….and so we ended up carrying him anyway. So silly!

I don’t know why exactly, but I LOVE this next photo.

I think this tree looks like a Shrek House and aren’t my boys cute!

After this, my phone died and I didn’t get any more photos, BUT….basically, we turned around and headed back to the van because it was time head into Vancouver to go to the airport to pick up Geli….

The boys were asking to go back even before we left and so I’m hoping we’ll have another opportunity to get back into Lynn Valley before the summer is over!

New York – Day 1

Angelica had to get up SUPER EARLY on Sunday morning because she had to BE at the airport at 5:30am. This meant that she needed to leave our house around 4:30am….which means that she had to wake up even earlier.

Jon and Geli managed to get off for the airport on time and they met up with the rest of her group.

After a hug and a kiss, she was off…

They landed in New York on Sunday evening…..

Airports always have neat art or sculptures in them don’t they?

Angelica came home telling us about the amazing vending machines that she saw and it seemed quite fantastical until she showed us this photo of a vending machine full of ipods and cameras and games and accessories…..is that not just insane!

Of course you’ve got to take a photo of the New York Taxi’s…..

They got into their hotel and got settled and after a LONG day of traveling they settled down for the night because the next day would start a WHIRLWIND of activities that would tire any of us….

The view of the sunset from Geli’s Hotel Room.

We’ve decided to break each day up into it’s own adventure and story and so come and check back in to hear more about Geli’s adventure…..

To see all of the pictures from Sunday July 17th – click here!

Round Up

So, I have a few photos and videos to share with you….and so I thought I’d try to throw together a montage….or basically just a list of pictures and videos with some (less than) witty banter kinda wrapped around it…..

Last Sunday, my brother Tim and my sweet nephew Max popped over for a quick visit….Max is just SO darling and he’s smiling and coo’ing up a storm. He is just one of the most darling little men in my life.

Earlier in the week…..like possibly on Monday or Tuesday, Jon and I took the kids for a walk and when we got to the boardwalk there were young owls up in the trees. It was SO cool to see them so close. They were screeching if they felt scared and we tried to be as quiet and respectful as possible, but between Jeremy and Josiah…..we weren’t as quiet as I’d have liked to be….

I think that it was Wednesday that Jack came over for a quick visit while Debbie ran some errands. Judah and him were having so much fun pulling the diaper wipes out of the container. They just kept coming and coming and coming…

On Thursday, the boys and I went for a walk. We go for walks to entertain the boys, to wear them out, to keep them from destroying the house……and to keep me from getting any fatter…..

Just across the bridge, on the path close to our house I came across these mushrooms. Aren’t they cool looking? Anyone have any idea what kind they are? We didn’t touch them, but they were too pretty to not take a picture of!

We live in one of the most beautiful places, don’t we? This is literally 5 mins from my door. I LOVE British Columbia!

We went to one of the many parks around our house and I watched Josiah climb this thing over and over and over. Every time he did it, I would panic a little (after all he’s only 3), but this kid is part goat (ha ha ha) and has been climbing since he was very little and hardly EVER falls….and so I try not to freak out and wrap him in bubble wrap and keep him tied into the buggy sitting beside me….

I forgot to put shoes on Judah and he was going all howler monkey on me at being stuck in the stroller and so I just let him play in the rocks……

Those rocks…….GROSS! Judah was FILTHY when I picked him up to walk back home. He looked like he was a powdered doughnut….only covered in dirt and dust and who knows what other filth. So disgusting! But he enjoyed himself and that’s what’s important, right???? I’m still not so sure of that, but oh well!

I also find that the days we go out for walks….the kids sleep SO MUCH BETTER! Case in point…..

We had sat down to watch a quick video before bedtime and within 5 minutes of snuggling with daddy he was GONE! I love it when bedtime is that easy.

On Friday, my brother came over to finish my hallways and stairs, and Daisy and Max came for a quick visit too….I love sleeping babies….probably because mine hardly ever sleeps…..

and with that…..we’re finished this session of Round Up!

Home

My baby is home!

We picked her up at the airport last night at 5:30pm. It was SO WONDERFUL to see her and she looks AMAZING!

Her skin is sun kissed which is such a fabulous comparison to the pale greenish hue that her skin has carried around for the past year.

She had an amazing time and took 400 pictures to remember it all. I’ll get a few of her favorite pictures up soon.

It’s currently 10am and my teenager is still sleeping. Considering that New York is 3 hours ahead of us, it would be 1pm over there and so I’d say that her week away has tired her out. But its a good tired….

I was so glad that she was able to go and even happier that she’s home!

New York Adventures

We finally heard from Angelica.

After dropping her off at 5:30am on Sunday morning, we didn’t hear from her again until Tuesday afternoon. That’s a looooong time to be away from someone that you’ve worried over and “mother hen’d” for over a year.

And……she was fine. Obviously!

Jon and I…..not so much!

I mean, we are okay and in all reality, too busy to be worrying 24/7 but there are definitely the odd moments that get ya.

She called on Tuesday afternoon just to let us know that everything was okay and that she was having SO MUCH FUN. I asked the usual “How are you doing? How are you feeling? Everything okay?” questions and then reminded her to take a million pictures and she assured me she was and then we hung up.

It was just a quick short conversation and so we were DELIGHTED when she e-mailed us on Wednesday. It wasn’t a long e-mail, but enough to connect AND THEN…..

Wednesday afternoon she emailed a HUGE LONG RAMBLING e-mail. It was wonderful.

So far, they have seen or done…..
– Mme. Tussaudes (the wax museum)
– Empire State Building
– The Blue Man Group
– Lion King (the musical) and got to go back stage
– Battery Park
– Statue of LIberty
– a Private Pool Party

And they still have today and tomorrow.

She mentioned that it is SO HOT! She wore her hoody one day and said that it feels like you are being smothered with a heavy blanket. She is also LOVING the restaurants that the are eating at, but she also mentioned that she is missing her fruits and veggies….apparently you can eat too much junk food!

I’m so glad that she has had this opportunity. It is such a blessing. I can’t wait to see all her pictures and to hear all about her many adventures.

Ponder Park Adventure

Yesterday morning, Jon and Geli had to be at BC Children’s Hospital at 8am…..this meant they had to leave our house at 6:30am……YUCK!!

We (Myself, Xandra, Jeremy, Siah and Judah) packed up and headed out to my sister’s house. They’ve just bought an acreage and it’s an unbelievably gorgeous piece of property and when they are done remodeling…it’s going to be an even more amazing home!

We decided to walk the pipeline in the park close to their house and if all went well, we should end up at a little creek where the kids could puddle around for a little bit.

Neither Debbie nor I had ever done this exact “walk” and yet we decided to take 5 children and one double runner stroller…..I’m not exactly certain what we were thinking and yet off we went.

We reached the park and then headed down the path. There were SO MANY berries and the kids were in heaven picking and eating…the huckleberries and salmon berries were delicious. We reached a fork in the road and veered to the right and headed into the tall grass. After about 2 minutes, we reached the pipeline.

By this point we were 4×4’ing with the buggy and I was just glad that it was a jogging stroller because there was not way that a regular stroller would have handled the grass or the uneven ground. As we looked ahead, we saw a hill sloping downward….

That hill sloping away from me…..that the kids are running down…..that was just the small hill….it got worse, much worse!

There was a second much steeper hill, that I never ended up getting a picture of, because it required both Debbie and myself to hold to buggy. At one point, I looked up the hil behind us and commented on the whole “if we are going down we are gonna have to go back up and how bad that was gonna suck” business! But, we could see the creek and we were so close and so we carried on.

Of COURSE we wore appropriate foot wear……

Here we are at the bottom of the hill. The boys laughed and giggled the whole way down the hill….

Jeremy was the first one to get in the creek and everyone else followed quickly after. The water was FREEZING!!!!! Like, actual pain, hurt your feet freezing, but the little babies, didn’t seem to care…they just wanted to get into the water and to play with the mud…

This little one was more interested in balancing on the rocks and trees than actually getting into the water…..at one point he fell and scratched his leg and then showed me the scratch and told me that the fish had bitten him….it was pretty cute.

Diesel (the dog) was so funny. She kept sticking her head completely under the water and picking up rocks that were bigger than grapefruits and pulling them out of the water….at one point Jack decided to throw her a stick…

So of course he had to pick up the largest stick the he could find…..

He is just SO CUTE, isn’t he?

The littlest boys were in HEAVEN playing in the mud…..

Judah would FLIP OUT anytime I tried to remove him from the mud. This is the little boy who will settle instantly if you take him outside or put him in a bath….this combines the best of both….outside and in the water….

The creek is in the bottom of a…….valley? There are two steep grassy hills on either side of the creek. This is the hill of the other side of the creek – the side we did not walk up or down…purdy, ain’t it?

Here is shot of the creek……this is such a pretty, pretty area.

We stopped playing long enough to have quick snack break….those dairy-free, gluten-free oreo type cookies are sure delicious and the extra sand and mud makes them even more delicious….

Then we packed everything up and took a look up the hill….here is a god shot of it….can you see Josiah in the bottom left corner….yah, it was pretty huge. And after this hill……there is a second one to climb…

We started out with both Debbie and I pushing the buggy together and that worked for a bit, but then it got difficult and Judah started screaming and the wheels kept turning around and wouldn’t lock still and I got tired and Debbie ended up wrapping the dog leash around the front bar on the buggy and pulling while I pushed….We had many rest breaks and at the top of that hill that I showed you….Josiah sat down and refused to go any further.

On the trip up the first hill, he had been hanging off my back pockets and the buggy and whatever else he could find to get some help to get up the big hill and he was officially POOPED! I didn’t blame him and yet we were already pushing 50 pounds of baby up the hill added on top of the buggy and I didn’t need to carry another 40 pounds of Siah on top of that.

Aunty Debbie lured him up the second hill with promises of a piggy back ride once we reached the top….and HE MADE IT.

We finally made it back to Debbie’s house and had some lunch and then packed everyone up to head home.

On the way home, my little man fell asleep. He climbed the hill, but the hill won!

I tried for about 5 minutes to get him to wake up and that was not happening. He was SO tired! And so I let him sleep.

It was a great adventure but I don’t think we’ll be taking the buggy back down to the creek any time soon…or ya know…like EVER!

You can see more pictures from our great adventure here!

Starting the Next Phase

And so it starts, as of tomorrow morning Angelica starts Maintenence.

We got her bloodwork done on Saturday morning and we waited and waited and waited for what seems like FOREVER! Finally one o’clock rolled around and we called the lab for her numbers and……..they weren’t ready! Talk about frustrating!

We were told to call back at 2:00pm and so we waited another whole hour and finally her numbers were ready.

White blood count. 2.8
Hemoglobin 106
Platelets 228
And the magic numbers……..

Her neutrophil was at a .8

In order to start the Maintenance, she needed to score a neutrophil count of at least a .75 and on Friday she was at a .5 and there was talk of her counts not being Hugh enough to start on Monday.

But she did it. Her body has managed to rebound and to finally fight off that stinking virus that has been plaguing her for the past few weeks.

So she heads in bright and early on Monday morning for an 8:00am appointment for a lumbar puncture with chemotherapy being injected into her spinal fluid. Then she has her monthly dose of Vincristine and she will come home with prednisone and 6-Mercaptopurine. She takes the 6-MP every day for the next year and a half. The Prednisone is taken 5 days out of every month.

So while this next phase is less intensive than the past year, we are not finished whith this whole ordeal by any means.

But, looking towards the positive side of things……her immune system will be functioning at a more consistentantly high level than it has been over the past year, and she will be less ” impacted” by the chemotherapy. Her hair will grow out and she will have less trips into the hospital.

Our lives should settle down as we adjust into a new chemotherapy schedule and how it impacts our family. We are really looking forward to a bit of a slower pace.

The most pressing thing currently is that apparently all of our walking that we’ve done has resulted in some trauma to Geli’s heel. It looks like it might be tendinitis of her achilles tendon. Its causing her quite a bit of discomfort and we need her to heal before her heads off to New York next week!

So if you all wouldn’t mind sending up a prayer for her heel, that would be much appreciated.

16 Years!!!!

It’s amazing to me that it’s been 16 years already and yet I can hardly remember what my life was without him in it.

We married young. I was 19 and he was 21 and we fancied ourselves so old and so terribly mature.

HA!

We were babies!

Ah well, we’ve made it this far! And we’ll make it a lot longer, God willing!

We’ve made it through 10 moves, a stillbirth, 3 miscarriages, way more church politics than anyone should be involved in, multiple jobs, job loss, opening a
business, way too many fights, 5 amazing children, so many amazing conversations, so much laughter, and joy and amazing opportunities, amazing family and equally amazing friends…….we’ve been through a lot and we have lots more life to live.

I married my best friend and I’m so thankful I did! He is truly my best friend and my greatest love. He is caring and supportive and loving and one kick ass father.

He is the perfect man for me! I don’t know what I would do without him!

I’m looking forward to growing old together, to seeing what we will be accomplishing in the days and months and years ahead. Life is an adventure and I have an amazing partner to experience it with!

Happy Anniversary to you, my Love!