ME – Page 16 – xangelle.com

Ambleside

Last Tuesday we woke up and it was just another day.

This summer has been a bit of a bummer. It has not gone exactly how we had planned or expected and while nothing terrible has happened, it’s not been as relaxing as I’d hoped!

Around 9:30am, I decided that if the kids and I could get the house cleaned and packed and ready to go by 11:30am – that we’d head out to the beach. At this point, I still wasn’t sure which beach I would head to as they are all about an hour away from us, but I was determined that we were not going to just sit at home and do nothing for one more day.

The kids were pretty excited and we managed to get everything ready and done just after 11:30am and so off we went.

As I pulled out of the driveway, I was still unsure about where we should go…I was contemplating 3 different beaches…White Rock, Spanish Banks and Ambleside.

In the end, Ambleside in West Vancouver won out mostly because I could park and be on the sand in about 20 steps and with 5 kids in tow and all our gear – the close proximity to the beach, the parking spot and the bathroom were key factors in my decision.

Traffic was NON-EXISTANT and we made it there in just under and hour. The weather was not AMAZING, but neither did it suck. It was one of those days, where it was cloudy, but there was still the possibility of getting a burn if you didn’t take the right precautions.

As soon as we hit the sand, the boys were gone, headed straight for the water. Jeremy stopped long enough to point out a good spot that he figured I should put the blankets down on and I agreed, it was a pretty good spot.

We laid the blankets out and put the baby on them and he instantly crawled the edge of the blanket and picked up handfuls of sand and hucked them ALL OVER THE BLANKETS! At that point, I moved him over into the middle of one of the blankets and then took possession of that blanket. The girls shook all the sand off the other blanket and ATTEMPTED to keep it sand-free…….between the baby and the 3 year, it was a losing battle. I didn’t even try to stop him from loading up my blanket and to be honest, I just didn’t care.

The kids played and played and played and played.

The weather was perfect….warm enough that you could just wear a tank top, but cool and cloudy enough to keep just about everyone else from coming to the beach.

The kids tried to go in the water and the girls went in past their waists…..crazy kids. Josiah went in but decided that he didn’t want to go in, but then fell in and so that was that.

He came up and got a towel from me but from that point on, he was a sandy mess….it was…..AWESOME! sort of….

The kids were playing so nicely together and except for the occasional squabble between Jeremy and Josiah, it was the best couple of hours that we’ve had in a while.

I was able to just sit and then every once in a while retrieve Judah and bring him back to the blanket….and then he’d start crawling back towards the water again stopping every now and then to pick up some random object and put it in his mouth.

The kids splashed in the water, made a sand wall, dug a hole, buried Jeremy, and played on the playground. We ate lunch and had snacks and went to the bathroom and the only mildly upsetting time was when we lost Josiah for about 90 seconds. He had come back with me (from the bathroom) and was right behind me. I guess, when we walked over the cement wall and onto the beach, he stayed on the wall and walked back along it towards the bathroom. I made it back to the blanket (which was about 10 feet away) and sat down. Talk to the girls about how the baby was when I was gone, turned around and Siah was gone…..Xani and I ran around like chickens with our heads cut off and fortunately, the lady next to us spotted him on the wall back by the bathrooms…..I had a short little chat with him and after that, he stayed pretty close.

The biggest downside to the day was when Jeremy decided to not feel well about an hour before we had planned to come home. He was complaining of a headache and an upset tummy and stopped playing, wrapped his head in a towel and lay down on the blanket. Then he wanted to go and sit in the van and was moaning loudly about needing to barf.

After that, We packed up pretty quickly and headed home….unfortunately, the traffic was just starting and we had about an hour and a half drive from West Vancouver back to Langley. FORTUNATELY, Jeremy slept the whole way home and that seemed to help a little. He never did end up barfing (Thank God!) and by the next day he was 100%, so who knows what his issue was????

It was an awesome day and we will definitely be headed back there before the summer is over.

If you’re interested, you can see all of my photos from our Ambleside Adventure by clicking here!

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…..

As It Is……

I typed this earlier today and then didn’t have time to proof it….so it may be scrambly or not make sense in parts, but that is how things are going these days and if I try to take the time to work on this….then I may just give up and not post it….and so here it is….here I am…..there is where I’m at…just as it is….

These are some tough days that we are going through right now.

Angelica’s counts have been so low over the past week or so and it makes for some very stressful times. It feels very vulnerable and like she is unprotected. Because the “enemy” are unable to be seen with the naked eye…it makes this fight, that much more difficult. We don’t know where they are and so it makes protecting Angelica almost impossible.

Any open wound, no matter how large or tiny is an open source for infection and at this point, a tiny paper cut could send her into the hospital……

It’s not that the paper cut could send her into the hospital, but that the cut is an open wound and if she comes in contact with a bacteria and it gains entrance into her body…..she has no ability to fight off that infection.

The health that you or I take for granted……the cuts, and scrapes…the bacteria that we come into contact with and never think twice about,…..it all poses a very serious risk for her.

And right now especially, it’s tough….because she is supposed to be going to New York in 12 days. That’s less than a course of antibiotics (14 days) and throw in the 24-48 hours that it would take to culture the particular strain of bacteria or virus and you are looking at possible 16+ days in the hospital……none of this do we want on a good day…..much less when her trip is in 12 days.

Every time she mentions, not feeling well or that she has an upset tummy or a headache, or she feels hot or cold…..every time she coughs or feels like she might barf……we reach for the thermometer to take her temperature because when her counts are this low, a fever is often the only indicator that something might be brewing in her system.

I have been feeling so worn down as of late. I feel like I am reaching the absolute end of my rope. There are things that are just piling on top of everything else and making the end of this stage of the journey that much tougher.

I’m physically tired. I’ve mentioned this before but it’s true. I can keep putting one foot in front of the other because I HAVE TO, but that doesn’t mean that those feet don’t feel like they have been dipped into cement.

I’m emotionally tired. I’ve spent a good portion of this past week just on the edge of crying and every little “bump” has sent me over the edge and set off tears.

Probably the biggest frustration for me personally is the mental exhaustion……I am just not able to compute things right now. I am struggling with organizing and putting things together. This might sound so simple and ridiculous to you, but I walked around Superstore 3 times on Monday afternoon with my shopping list in my hand and yet……I just could not seem to make sense of my grocery shopping list. I had to double back to pick stuff up and in the end I had to get Jon to just walk me through the last bit of my list as I just couldn’t make sense of it……even then….we walked away from the store forgetting to pick things up.

I walk around my house forgetting what I was supposed to be doing and why…..

I’ve just gone too far and things that I used to be able to do on brain power alone, and then with lists and prompts and gadgets and reminders…….I find myself unable to do even with all the “help” and tricks that I’m trying.

And that inability to function at the top of my game it makes all of this that much tougher. I don’t’ even feel like I’m functioning “in the game” and that sets off those tears all over again.

I’m trying so very hard to be gentle on myself and yet, I expect so much because I am normally capable….but right now I’m not….and that’s hard for me to deal with.

We reach for the thermometer to take her temperature and inside I am freaking out….praying and hoping and wishing (and truthfully panicking) that the thermometer will read low numbers….that I wont see a number indicating a fever….

Just that stress alone is too much right now….

On Thursday her neutrophil count was not able to be counted (it was too low to be measured…lower than .02). Monday when we took her in for blood work, her counts came back at .1 and while this is much better than the previous count….it’s still WAY TOO LOW and she is still SO at risk.

She will get another set of bloodwork on Thursday and we are hoping that her numbers will be over .75 and she can start Maintenance…..

Did you know that exercise actually boosts your immune system? Like immediately there is a benefit……when oncology kids are getting their bloodwork done to be able to start chemo….they have to be at a certain level in order to start the next phase of chemo. If their levels are borderline low…they will actually have the kids walk around the hospital or walk up and down the stairs a few times and then run another set of bloodwork and it will be up and over the level needed…..amazing isn’t it? It’s huge incentive to exercise especially throughout the fall,winter and spring……just some thing to think about, eh?

We’ve been walking everyday. We are hoping to accomplish a few things with this. One, to boost Angelica’s immune system and to get that neutrophil level up. Two, to increase Angelica’s strength level. She’s spent a great deal of this past year on the couch and it’s time to rebuild up the strength and muscle that she lost. Three, we are getting a little bit of sun, which helps to get extra vitamin D into all of us. That “happy vitamin” is so necessary and good for all of us; plus it puts a little bit of color into Geli’s skin and again with the whole…”she’s spent most of the past year inside and on the couch” business…..between that and being chemo induced anemic…..she’s been looking pretty pasty. The color gives her a bit more of a healthy glow….which matches her new healthy position in life! Don’t worry, I’m a big fan of proper and safe sun exposure.

We are hoping, although we won’t know, that her counts will have come up above .5 (the level that she was allowed to safely go to school at) by tomorrow…..this would allow her to do a few more things like going shopping with us and running errands and things like that.

Once she starts Maintenance, then her counts will obviously be high enough and I will feel like I can breath and relax….

To be honest, I’m scared. I’m scared of feeling like I can relax. I’m scared of how I might feel were I to just relax…. I’ve been trying so hard to keep things all together and it feels a bit like a dam might explode and I don’t feel like I could handle that. I’m scared of the tidal wave of emotions that might be unleashed were I to just relax….

I just want to go and sit somewhere by the beach and let the wind blow ~~in my hair ummmmm, well~~ on my bald head, to feel the sand in my toes…..to just close my eyes, and smell the salt air and let the intensity of this past year just wash away from me with every wave that crashes.

I’m hoping that this summer will be a healing one….and that I’ll get a few chances to make it to the beach.

She Needs…..

I know that a fever is not that big of a deal….well, most of the time a fever is not that big of a deal. And really, it’s not the fever that’s got me so upset….it’s the timing of it all.

It seems like every time something goes wrong….a few more things all jump on top of us, and we are left under the mountain of crap trying to not be squished. Frankly, I’m tired of it all. I just want to have things go really, REALLY good for a long time. Is that seriously too much to ask?

The fever is not that big of a deal, but it means that I cannot go in to see Jon or Angelica and because I cannot go in to see them, the other kids cannot get in to see them. It’s possible that I could drive us all in and I could hang out in the car for a couple of hours with Judah while they visit, but that really doesn’t sound all that fun, does it? So not looking like it’s going to happen like that.

Jon and Geli are doing well, but they are BORED. She feels fine and yet…they must just hang around.

She seems to be doing amazing. There are a few things that need to happen in order for her to be discharged.

– She needs to have negative blood cultures over 48 hours (that’s up tomorrow at 1pm)
– She needs to be fever free for 48 hours (that’s up in the wee hours of Saturday morning)
– She needs to actually have a neutrophil count (that won’t happen until her WBC is over .5 and today she was at a .3)
– She needs to have one blood test trending downward instead of upward….it was at a 25 today and needs to hit lower numbers.

Basically we are looking at the earliest of Saturday morning before she would be discharged. I’m hoping and praying with everything in me that they do get to come home then.

It was a tough day today and yet I supposed it was a good one, in spite of it all. I have really low expectations on what constitutes a good day, ya’ll! Ummmm there was no puking. Very little fighting. Everyone was sleeping by 8pm….and um…ya….everyone got fed. So ya…..it went okay, I guess!

Well, I’m headed off to bed myself….two night with very little sleep are….well….ya….that…..

Night!

ps. Could ya pray for Judah? He’s still feverish and I’m not sure how the night is going to go and I could really use the sleep and he could really use the health……m’kay??? Thanks so much!

Like a Bad Dream

You will NEVER believe what I am about to tell you.

I can hardly believe it.

I put the kids to bed and was in bed and sleeping just after 10pm. I was so tired because we’d been up most of the night before.

All the kids went to bed happy and healthy. Judah woke up at 1am screaming. This is normal. This is how he wakes up. Frustrating, but oh well…..I went into his room to pick him up and he felt like a hot coal.

Can you believe it? Judah has a fever. I was in shock. How the crap does this happen? Why is this happening? I just don’t understand.

I mean, I understand the how and why of a fever, but I really don’t get the timing.

He clocked in at 37.7F and over the night just continued to rise.

He and I were awake from 1 until after 4 am. Right around 4am, Xani came down to my room to tell me that she’d been awake since 3:30am because she had a nightmare.

It was pretty bad. I prayed with her, talked with her and asked her to try to get back to sleep. She went up stairs and I didn’t hear back from her again.

Judah finally fell asleep on my chest and I just used my pillows to prop myself up so that he would stay there and sleep.

He woke up at 6am and Xani came downstairs just before 7am to let me know that she’d not been able to get back to sleep. She was too scared that she’d go back to sleep and “finish” the dream.

This morning Judah’s temperature hit a 39.7F and I decided that it was time for some Advil. I don’t typically like to medicate my kids but this temp was higher than I’m totally comfortable with.

I’m a little perplexed about what’s going on. He isn’t throwing up and he doesn’t have a cough. There is no runny nose! He’s peeing and not crying hysterically. He’s nursing. He’s even eaten a tiny bit of breakfast. He does have the feverish, hot looking eyes and it definitely not his usual chipper self.

He just scored a 37.5F after a dose of Advil…..so its responding to the meds which is a good thing.

I’m tired and upset and really, REALLY frustrated about this. This is absolutely ridiculous. We had planned to go in and see Geli and Jon as a family today. The kids were pretty excited to be going in to see them as they were pretty upset that they had to go into the hospital in the first place. To wake up and hear the news that we were not going in….well, there were a few tears.

I know we will make it through this but it’s still tough. Mostly, I’m angry. Angry that this is happening. It’s crap!

Geli and Jon had a good night last night. She felt pretty good after getting the blood transfusion and didn’t get to sleep as early as I would have liked her to but I’m just happy she was feeling a bit better.

Her counts are all up this morning…

for those who care:

White Blood Count is .3
Hemoglobin is 94
Platelets are 66

So everything is up, even if artificially, which is good. Her temps which were up last night have been hanging around 37.1F which is normal. So we are just waiting to for her counts to come up and for her cultures to come back negative.

I’m hoping that Judah will actually sleep today and then I will hopefully lay down for a nap as well.

I’ll update as soon as I hear any news.

frustration rises…..

I’ve had a bit of a tough day today. It’s been coming on for a few days now and I think it’s actually hit me.

I’m frustrated and what’s worse….I’m frustrated that I’m frustrated. How’s that for ridiculous?

He’s too cool for this wig!

My mom and dad took Siah camping for the week and in some ways this week has felt like a vacation. In other ways, I feel like it’s just highlighted how little I’m able to accomplish.

I could tell you all the things I’ve done and you’d probably tell me that I’ve done a ton of stuff, but this is not about the things that I’ve done as much as it is about the things I’ve not done. The things I want to do that get pushed aside as the things I have to do or need to go keeps cycling round and round and round. It’s frustrating!!!

I can say all the right things to myself about how I need to focus on what I’ve done. I can tell myself that it’s just a season. I can tell myself that my babies won’t be babies forever. I can tell myself to stay present and enjoy “this” moment……

Right now, I’m just feeling down. I’m feeling frustrated. I’m feeling UPSET!

It’s okay. I’ll be okay. I’ll make it through, but today……..today was a tough day.

Tomorrow will be better, right?

Cauliflower Pizza Crust

I feel better when I don’t eat flour. I love the things that I can make with flour and yet, when I eat too much flour….I just end up feeling bloated and gross.

Last week, my sister and I decided to support each other in our healthy food eating habits. We were feeling a bit off and knew that if we were accountable to someone that we’d have a greater chance of eating responsibly as opposed to just popping whatever was in front of ourselves into our mouths. So far it’s working. I am less bloated, feel more energy, feeling less sugar cravings and well, I’m just feeling better all around.

Basically we are eating 3 meals a day – no snacking in between. We are eating no sugar, no flour, no dairy – just sticking to whole foods. I think that we might shake it up this next week and do 2 smaller meals, 2 snacks and one larger meal. Neither of us are loving feeling like we need to stuff ourselves at each meal so that we’re not hungry in between meals. I’d rather just plan to eat some veggies or fruit in between meals instead of fighting the hunger.

I had made up our weekly meal plan before I agreed to start this with Debbie and PIZZA was on the menu for Friday night. I could have just had something different, but I remembered that I had heard of a Vegetable Pizza Crust somewhere before and so I went searching.

I found this recipe and with a few variations, I decided to try it.

I used 1 cup of grated cauliflower, 1 egg and 1/2 cup of goat mozzarella, 1 tsp of garlic powder, 1 tsp of oregano and 1 tsp of basil.

You mix all of the ingredients together and mix really well. You end up with something that looks kinda like this…..

I got a piece of parchment paper and spread the mixture in a pizza shape (otherwise known as a circle).

I used my fingers and a rubber spatula to spread it all out. Mine was about a quarter of an inch thick. I popped it into a pre-heated oven that was set at 450 degrees Farenheit and waited for about 20 minutes or so….until it looked like this….

It needs to be cooked until the edges have browned. If you cook it just enough, then the crust will hold together and you can pick it up and eat it with your hands just like a pizza. If you under cook it, then it will be a bit sloppier and less easier to handle. (Just a friendly, helpful little tip)

I had found some Organic Chorizo sausage at Organic World out in Maple Ridge. Lots of the regular pressed meats have chemicals and wheat in them and as I’m trying to avoid those ingredients, I was happy to have found a spicy, healthy and very tasty option.

I put a thin layer of tomato paste, topped it with the Chorizo Sausage, some Goat Feta, Red Peppers, Kalamata Olives and finally some Goat Mozzarella. Just before I put it in the oven, this is what it looked like….

This is what it looked like after it had cooked at 375 degree Farenheit for a few minutes until the cheese had melted….

Doesn’t that just look delicious?

The kids had been commenting about how good the house smelled…kinda like Parmesean Cheese toast and while it did smell and look pretty darn amazing – I will admit that I was slightly concerned that it would taste less amazing than it looked.

I needn’t have worried. It was DELICIOUS! SO Yummy! I will definitely be making this pizza again and again and again.

I had used a whole head of cauliflower, 3 eggs and 1 brick of goat mozzarella and it made 3 large pizza crusts. We ate 2 of the crusts on Friday and I cooked up the third crust and let it cool. I put the cooled crust into a large freezer ziploc bag and put it in the freezer. I pulled it out of the freezer on Saturday afternoon and let it sit on the counter for a few minutes. It was only slightly frozen when I piled a bunch of topping on it and threw it in the oven. After the cheese had melted, I pulled it out and served it for lunch. The only difference that I could tell was that it had a slight cauliflower taste, but overall I liked it and so I think that the next time I make pizza, I’ll probably make enough so that I can freeze a few crusts to be able to pull out and whip together a pizza when I need a quick easy meal.

If you are trying to avoid wheat and dont want to buy the guten free crusts…I’d offer this as a delicious alternative. Let me know if you do try it and what you think? Does it sound appealing to you or just plain disgusting?

And the Waves Roll In….

I think I’m going through another low moment in this whole thing.

I’m hoping that it was just the crap food that I ate at Easter that is the reason why I’m so stinking tired, but regardless….I’m finding it a struggle to get motivated and get everything done. I kind of have that feeling that I’m stuck with my feet in cement and that I’ve got cement running through my veins….everything feels like it’s SO. MUCH. EFFORT! Last night I crawled into bed with Judah at 7pm and “cuddled” him to sleep and promptly drifted off myself.

Breakfast Time

I’ve found that much like the waves of grief, that come and go sometimes stronger and sometimes more gentle…..that the exhaustion of this whole time in our lives seems to come in waves as well.

I feel completely overwhelmed and then I find that things seem a bit easier….then I feel overwhelmed and tired again and then I find that I feel stronger than before. It keeps on cycling and the most exciting part of the whole cycle is that I’ve recognized that it comes and it goes, and more often than not I end up feeling stronger after the “down cycle” than before.

My Breakfast Partner

I’m not “fighting” the down times as much and I’m finding that helps some….

It doesn’t really make me feel any better, but I don’t feel so blindsided by it all. And yet, the down times frustrate me….

Good Morning

I’m tired. I feel overwhelmed by all I must accomplish. I feel a bit stressed about this next round of chemo that Geli is supposed to be starting tomorrow, and pray that it goes smoothly. I wish I had more time….in a day, to myself……just more time….and energy! Lots more energy would be nice, too!

Part 2 – The Place I’m In

I mentioned in Part 1 that I spend a great deal of time inside my house. The biggest reason for this is to keep Angelica as safe as possible.

We cannot protect her from everything and even in this environment, no matter how hard we try, there are bugs and bacteria that we cannot eliminate. When her counts get low…..she is even a danger to herself…..any cut or bump can add to the possibility for a problem….

It’s not fun.

The weight of the stress alone, is almost too much to carry; let alone just dealing with the actual chemo and the side effects it brings and add in the emotional side of things and often it can seem overwhelming, but that’s not the point of this post….

Friday April 8 Langley, BC

Have you ever been hurt by another person?

I have.

For different reasons and at different times in my life, my feelings got hurt and it sucked. No one likes to get hurt, do they?

Well, here is some news that I’m sure is news to no one……..PAIN and SUFFERING happen. It’s as much a part of life as breathing and dying. It happens. It’s gonna happen! It’s just a part of life. No one gets a free pass. I’ve found that when I can accept that life has good AND bad moments, I can be more at peace with myself and in turn, when I am more at peace with myself – then I have more grace for others….

In this place that I’m in………I’m uncomfortable!

I’m literally living inside walls and there are aspects of this that feel so, so, SO claustrophobic!

You see, in response to the hurt I experienced, I built walls; and these walls……..they were supposed to keep me safe and protected.

I’m not really sure what I was thinking other than I just didn’t want to get hurt again. I guess that I figured that if my walls were big enough then I could keep hurtful people from doing hurtful things to me, and then… my life would be all sunshine and roses.

People who are hurting…..they end up hurting other people and the cycle rolls around and around and around! Think about it….when are you most likely to lash out at someone….after you’ve been hurt or offended?

HA!

It doesn’t really work like that. I still got hurt!

Eventually it got to the point where I avoided people. I don’t mean that I physically avoided ALL people, but that I didn’t really allow anyone to be close to me. I never allowed myself to be vulnerable to anyone. My understanding was that if I opened myself up to people, then I was opening myself up to a world of hurt.

And in time, I found myself alone!

The walls I had built to protect myself by keeping others out created an even bigger problem…..they allowed no one in.

I was alone; oh so very, VERY alone!

Eventually, I realized that this was a horrible way to live and after a fair amount of counseling, I began to let the walls down. I’m not saying that everything was 100% better and that I had no walls and was completely open and vulnerable to everyone, but I believe I was heading in the right direction. I was in process….. I was allowing people in to see me…to see the real me; to get to know me, the real me. Yes, I recognized that I might get hurt, but honestly, being alone hurts worse.

People are lonely because they build walls instead of bridges. Joseph F. Newton

This last year, I’ve experienced those walls in a very literal way. I’m inside these walls. We are trying to create a safe place for our daughter; and for a variety of reasons, I’ve spent most of the past year within some literal walls. It’s been a rough year. It’s been a stressful year. It’s been a very tiring year, but most of all it’s been a very lonely year!

It’s also in some ways been a very enlightening year. I have SO MUCH TIME TO THINK!

Me as a Baby

Sometimes, this is a bad thing and sometimes, it is a very good thing.

I don’t want to be separated from “life”. Yes, this is just one year. Yes, we have made choices for a reason, a good reason. Yes, it’s not forever but right now it’s a lonely time and it sucks. I understand all of the reasons and it still doesn’t make it any better or easier. And so, I’m looking forward to this “season” ending and a new season beginning.

In any case, this has really cemented in me the fact that I do not want to be alone…..I do not want to live confined within walls. I’d rather be vulnerable than alone!

(part 3 coming soon)

Behind the Scenes….

This is what has been happening at our house, last night and this morning…

We had a great family get together yesterday afternoon and then Xani started barfing. Between last night and this morning she barfed 7 times….and we won’t event talk about what else was going on “behind the scenes” if you know what I mean….This morning she woke up with a fever…..this is so frustrating.

We moved Xani’s mattress into the TV room mostly to keep her and Geli separated. We are desperately hoping and praying that this “whatever it is” will skip Geli.

Over the weekend, Geli had a reaction to a bandaid and we think it’s a combination of the adhesive and the one chemo drug that she’s getting. Something similar happened once before. She has a bunch of blisters on her arm around where they drew blood on Wednesday and it hurts really bad. We have been applying Polysporin and praying that it just goes away and doesn’t cause any big problems. Her counts are high enough that we are hoping that she will be able to fight it off herself.

She did throw up her breakfast this morning though which scored her the right to stay at home today. And seeing as she is fine other than that barf…..I’m saying that it’s chemo related and not sickness related….at least it seems that way.

Jeremy also woke up this morning with his own “behind the scenes” action and he’s been alternately laying on the couch and laying in the bath this morning…..really not feeling very well at all. He keeps threatening to barf and we have a bowl close by, just in case.

There is a lot of soup and weak peppermint tea being handed out and we are praying that whatever this is….that it just stops now.

I was SO looking forward to everyone going back to school and Jon and I being able to relax on his one day off and nope…….so I’m pouting and whining a bit. I’ll be ok, but I’ve had enough of vomiting and diarrhea to last me a life time….

While I’m cleaning up vomit and other behind the scene messes…..do you have any humorous life stories to share with me? I’d love to hear from you….and I could really use the laugh today!

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