Month: January 2012

So Angry

I’m so angry right now.

So incredibly angry. It doesn’t help that Jon and I had a sweet argument in the middle of everything. We are both processing and it’s tough. I want to just be mean – I’m so not perfect – but there is no point. I’m not out to hurt him….even if my broken self feels like it might make me feel better, even for a moment.

We got a phone call today that we didn’t want.

Angelica has been diagnosed with Avascular Necrosis or bone death. Part of the long leg bones (Femur and Tibia) closest to the knees have some moderate death in them. We don’t know very much at this point and we won’t know more until we meet with the Orthopedic Surgeon.

Worse Case Scenario – New Knees.

There are other options, but none of them are anywhere as good as NO BONE DEATH. We have about 8 to 9 more cycles of this crap until Maintenance is over and we could see the end in sight and to have this come up….it feels like a HUGE BLOW.

The Dr kept saying that Leukemia is life threatening and knee replacement is not….and its not even a guarantee that she would need knee replacements. I know that obviously in the grand scheme of things…a life threatening disease is WAY worse than something that is treatable and NON-life threatening……..BUT HONESTLY……THIS SUCKS SO BAD!

I just want to scream. THIS IS ENOUGH. NO MORE! PLEASE GOD! PLEASE PROTECT US AND KEEP US SAFE. PROTECT MY DAUGHTER. I’VE HAD ENOUGH. I DON’T WANT TO DEAL WITH ANY MORE CRAP.

I don’t blame God for everything and yet…..truth be told. I’m angry. I’m upset. I don’t understand. I don’t feel very loved right now. And yet that goes against what I believe….I believe that God is a loving God. I don’t believe that He makes this crap happen. I don’t believe that He is testing us or teaching us something. I do believe that we live in an imperfect world with lots of things that go wrong and that there is sin and death and that regardless of what we go through…….He is always with us.

I choose to believe this. I choose to believe that He cares for Angelica even more than I do. I choose to believe that He is a good God. I don’t currently feel it, but I choose to believe it. I have faith that everything will work out for us. I choose to believe that everything will work out for Angelica. I don’t know how, but I do believe it.

But tonight….I’m angry. I’m angry at cancer. I’m angry that this wasn’t caught sooner. I’m angry that my daughter is in pain. I’m angry that Jon and I are so tired. I’m angry that we fought. I’m really angry about a lot of things….

This sucks. I know that I need to process this latest news and yet…I don’t even know how to do that…..

We will be okay. Angelica will be okay.

I choose to believe that even if it’s the last thing I feel……

I’m speaking life to Angelica’s bones. And I’m asking for you to speak life into her bones too….If you pray, pray for a miracle. We could really use one. I’m well aware of our reality and yet….I want a miracle!

Jon and I could also use some prayer. We are tired. SO Tired! So Worn out.

Geli and Xani, if you are reading this…..I’m okay! I promise. I’m upset and as I’ve told you a million times…….it’s okay to be upset. Just like I’ve told you…..feel your feelings, recognize what they are and then let them go……….and carry on “LIVING” your life. It’s okay to process. It’s okay to be upset. It’s okay to melt down and even have a hissy fit. Bad stuff happens sometimes, but we choose to not stay in the middle of the crap. This is just something that we WILL get through. We will continue to breathe and learn and make the best choices and we will choose to live life to the fullest , we will laugh and have fun and most importantly, we will love. I will help to carry you when you are down and you will love me and lift me up when I’m down. We do this because we are family. I’m just having a down moment, but if you see me tomorrow and I look okay…..it’s because I am. I’m not hiding anything. Life is too short and too precious to hide behind the lies of “I’m okay”. I am working though this and I am okay…..and if I have a moment when I’m not….that’s okay too. I’m just human. We all have ups and downs and it’s ALL OKAY! Feel your feelings, good or bad and then lets just live……I love you my precious girls. I am so proud of you both. You are growing up to be amazing young ladies. You each have different challenges to face in this life, but I LOVE how you LOVE and how you LIVE and how we LAUGH and even how we CRY……you girls are going to accomplish amazing things in your lives. I am so confident of that. I LOVE YOU BOTH INCREDIBLY!

LOVING TO LEARN / LEARNING TO LOVE

Ah….the baby’s been asleep for a while and I’m doubting that he will sleep long enough for me to finish a post. I should have…..well…no, I shouldn’t have anything.

I’m trying to not guilt myself into doing or not doing things and the fact of the matter is….I ate my baked potatoe while I leisurely browsed through my reader and anything else that caught my eye….yah, basically I wasted time, but…..IT WAS MY DOWN TIME and I’m trying my hardest to be okay with that.

Siah and the baby have been sick with a cough and runny nose. They are doing okay….but Jon and I…we are tired. Siah sleeps through the night, but hacks and hacks and hacks away. Judah on the other hand. He’s been up a minimum of 3 times a night crying and coughing and sounding Oh! So! Pitiful! He’s currently sleeping open mouthed on my couch and keeps coughing and coughing and I keep thinking that he’s going to wake up but he’s not…..which is amazing.

We’ve had a pretty strict schedule for the past two weeks and he’s actually been taking naps in the afternoon. I’d say that 4 out of 7 days a week, he’s sleeping for at least an hour just after lunch. I kind of “force” him to stay awake until after lunchtime. He’s usually a miserable mess by that time, but….it ends up with a little quiet time for all of us which is so nice.

We’ve been rocking through schoolwork in the mornings and finishing the “focused” stuff by lunchtime. After lunch we do arts or PE or if there was something that we didn’t get finished in the morning we finish that up.

We’ve been really working hard on multiplication. Its so foundational and something that Jeremy really struggles with. In the past, he’s HATED Math but this past week I asked him how he felt Math was going and he said it was, “Fun-ish?”

Although he had sort of a question to his answer…..it was still better than HATE!

I found a website called “Right Brained Math”

Check out the videos of the different times tables…..incredible!

Have you ever heard of this or seen anything like this? I’ve never ever seen anything like this. I’m well aware that there are patterns in Math, but I had no issues just memorizing the times tables and so I never needed anything like this. Jeremy is a completely different story.

The pictures and tables and patterns make so much more sense to him. He can make the tables up all by himself right now and even after 2 weeks, I can see that he is more confident in his math skills and as a result…..his self esteem is better. He’s not feeling so stupid.

This is where I get so frustrated. He’s not a stupid kid. He just has a different way of learning but when you end up SO FAR BEHIND the other kids because you haven’t mastered a concept yet but the class needs to move on to the next topic….and then its time to move on again and you still haven’t mastered the original concept……it’s no wonder you’d end up feeling stupid.

There are a few things that are really important to me over the next little while. I want Jeremy to WANT to learn. I want him to equate learning with fun! It is fun to discover new things and I want him to see life like that. I want to get beyond this current mindset that learning is something that you HAVE TO DO and IT SUCKS! I want him to learn how to type. His writing is atrocious and as soon as he learns how to type…we’ll deal with a few issues. His writing is illegible, most of the time. He HATES writing, printing…anything like that. And….once you learn how to type, you should be able to actually type faster than you can print. So, typing is important to me. Another big one for me is writing. I don’t mean printing but actually being able to get your thoughts out onto paper or the screen in such a way that it’s clear and concise and expresses feeling and emotion and get across the facts that are needed.

Currently, he pretty much HATES anything that I’ve listed as important…..which is mostly everything. But, I’m finding that between being able to explain why each thing is important and how it relates to him and his life goals, is making a difference. We are also working through an ADHD workbook that helps him to think through different scenarios and allows him to process them outside of the the pressure that an immediate situation brings.

On top of the stuff that we are doing “in house”….he’s also signed up for a Musical Theater class that he stressed over for close to 2 weeks, which when I peeked in on him in the class on Monday….his smile was bigger than his face and he was having a BLAST! There is also a Homeschooling PE Class and a Lego Robotics class that he’s taking as well. He’s excited about all of them, now that he’s done the first theater class….

I am already seeing little changes in so many areas and then….in others, not so much. It’s tough. I have to keep remembering that I’m working with a kid who has a learning disability and that he’s not going to just magically change. But, if I look over all at the big picture….I still think we’ve made the right decision for right now.

It’s tough. It’s oh so crazy busy and I have to be on top of everything ALL THE TIME or else CHAOS REIGNS.

Wednesday was a ROUGH day. I tried to take a video of him, but they didn’t turn out. We forgot to give him his meds first thing – don’t ask how we possibly forgot that, but we did – and he was a vibrating mess until 10:30….at that point, he felt so upset about himself that the rest of the day was pretty much wrecked. We did manage to get his school work done, but it did require some creative effort on my part. We managed to get through the entire day with only one bout of crying – his not mine….in case you were wondering.

In contrast, Thursday was probably the BEST day and he FLEW through his work with excellence….it was pretty incredible.

So, we have ups and we have downs. I continue to encourage him that he’s learning and having fun and that there is NOTHING WRONG with getting an answer wrong…it’s only an opportunity. An opportunity to learn and that’s what life is all about, isn’t it?

I’m hoping to instill a LOVE TO LEARN mentality along with the ever important LEARN TO LOVE mentality that I believe should guide our lives.

It’s in process….we are all in process, aren’t we? And that’s such a good thing…can you imagine being stuck where you are at right now….forever….no growth….I can’t!

Angelica’s Month 20 Update….

I’m downstairs hiding in my bedroom. Well, I guess that it can’t really be considered hiding because more than half of my family knows where I am but for this ONE MOMENT….no one is hanging off of me or asking me to do anything and aside from the muffled bangs and stomps of little feet up on the main floor….it’s fairly quiet.

It’s also freezing cold down here but that’s another story. I’m ever so grateful for that cold in the summer. And seeing as I’d LOVE for it snow and for us to actually have a WINTER…I really shouldn’t complain if my basement bedroom is a little on the chilly side. I think I just need to put on my parka and make myself a pair of fingerless gloves…..sounds good – I’ll get right on it….in all my spare time. HA HA HA!

Things in the Culley house are going well. I have almost ZERO personal time, BUT…..

Things feel peaceful. We are slowly finding our rhythm and after this last chaotic season of life that we’ve been through…..finding that rhythm again is bliss.

I thought that I’d post a quick update about how Angelica’s doing….

Geli is holding steady. I’d say that compared to a normal teenager, physically she is capable of about 40-50% activity wise, strength wise, stamina wise… She is still finding it difficult to walk and is still hobbling around like an old woman a fair amount of the time, but for the most part her spirits are good. She recently attempted to ride her bike and while she made it from our house to the high school, “the hill” up to the stores proved to be too much for her. I’m just thrilled that she’s interested in trying to do “normal” things. We were told that she would start to stabilize and normalize after about 6 months on Maintenance and well….I hope that we are seeing things start to get better and moving towards a more normal life.

Her hair is growing in and it’s so curly….

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….we keep dying it blond. I think she looks adorable with it….she sometimes gets frustrated with the curls, but I think it’s just because sometimes they stick out at the ends and she’s never learned how to “do” curly hair because….well…..she’s never had to…or never had the opportunity to…..regardless…she looks so cute and it’s so nice to see her with hair.

She did have a rough moment last week. Jon and I were getting ready for bed one night and Geli came down stairs to talk to us. She was crying and couldn’t sleep. Sleep is one thing that is SO IMPORTANT! And when it’s elusive…..it makes life that much more difficult. She is taking daily chemo and basically her body is fighting to repair and heal itself non-stop. All her energy is going into healing and so she doesn’t have a lot of extra energy for much of anything else…. Sleep is one time when it requires no energy to heal nd without sleep…she is so depleted, both physically and mentally. Anyway, She came downstairs and she was sobbing and sobbing; and I held her and asked what was bothering her…was she sick, was she in pain….what was the problem. She just kept repeating, “I HATE Cancer! I HATE Cancer! I HATE Cancer!” It’s so heart breaking to watch your child in so much emotional pain. Finally, she explained that she’s lost a year of her life….and she hates that. A whole year….gone! She didn’t get to be a 13 year old with all the fun 13 yr old things. She’s going getting better and is able to breathe a little and is starting to realize what she’s lost. She is going to school now and hears the girls talk about the things they’ve done or the places they’ve been or even the insignificant things….and she missed out and she will never get that back.

We listened to her and let her share. We validated her feelings because…well….she did lose out on a year (more like 18 months) and no…she will never get that back….but….then we reminded her that……..SHE DID GET LIFE. She exchanged one year of her life and in return….she got to live. It’s a pretty high price, but the stakes are pretty high, no? The whole “Healing” thing is such a process. She needs to heal. She needs to grieve. She needs to process. She needs to live and all of it happens at the same time…..it’s a lot to deal with.

Eventually we got her settled and back in bed with some melatonin….and she drifted off. She is starting to feel better and along with that “healing” you end up with reality hitting you hard. When you are right in the middle of the battle….you can only see directly in front of you and it’s not until you can take a step back and breathe that you realize the things that you’ve lost or missed out on….or the things that you still cannot do. In a way, it’s a good thing, because it means that you are able to start processing things….and then with the limited emotional resources that you have…you must fight and fight some more.

This whole journey feels like such a fight….if you know a family going through an extended illness or a terminal illness or some other long term physical or mental journey…..please be gentle with them. It takes everything that they have to remain upright. And often there is little to no energy for anything else…..it’s tiring and lonely! Please take the time to encourage ones that you know and to let them know that you love them and that you are standing with them and that you haven’t forgotten about them. I guarantee you that it will mean the WORLD to them.

Angelica heads in to BC Children’s Hospital on Monday for another dose of Chemo along with a dose into her spinal fluid. It requires that she be sedated so please keep her in your prayers. She also starts the monthly round of steroids and those really wreak havoc on her sleep. So pray that she’s able to get rest. She just feels so wrecked while she’s on the steroids. Also, they are sending her for an MRI for her knees to make sure that all the pain in her knees is not from bone death……it can happen to kids on the steroids….and we really don’t want that to be the case.

Thanks again for all your prayers for Angelica and our family. It means so much to us.

Christmas Day

I want to get these days recorded here before I forget details and moments.

I’m so thankful to have the pictures to look at and remember.

It’s long been a rule that no one is allowed to get their stockings until after 7am. You must stay in your bed until 7am and “woe be to you” if you wake any other person in the house up…..especially before then. The last few years….no one’s woken up before 7am….unless you count Xandra waking up in the middle of the night and going down to sleep on the couch until morning.

This year, the kids got up and even took Judah up to open his stocking. Sometimes, having the older ones who are able to take care of the little ones really turns out in your favor.

This is the first year EVER that I didn’t get up to see them open their stockings. I was TOO tired. In fact, I stayed in bed until after 8am…..until finally the kids could wait on longer and came down to wake me up.

This was my view as I walked up the stairs from the basement……the wreckage and aftermath of the stockings.

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We also make the kids eat breakfast first, before we open any presents….just drawing out the agony a little bit longer…..

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Normally, breakfast is a whole lot fancier than this, but this year……we rocked the cereal and I even let the older 4 kids have “normal” cereal.

After Breakfast, we moved over to the couches to open presents. I manned the camera and enjoyed my Christmas treat of coffee…..

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There were a few cuddles while we waited for everyone to get there.

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Jon passed out the presents and the unwrapping commenced….

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There was a lot of happy squeals and shouts as the presents were opened.

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After Christmas Eve, Judah had finally figured out what the whole deal with presents was.

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He was very excited to unwrap….

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….and unwrap….

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and to keep unwrapping…..he must have worked on that gift for about 10 minutes. It was pretty cute.

It was a great Christmas morning. It was a bit more subdued that usual, but even that was okay…

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After the presents were opened, there was a bit of a lull as the kids enjoyed their gifts…

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It was so good to just have a “normal, boring” Christmas. No Hospital visits or illness to bring stress to the day….just our family…..together. Perfect!

DSC_0291< The kids played nicely together while we got the dinner ready.

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Everyone got changed out of their jammies before we ate dinner. The girls were pretty excited to get new clothes and jewlery….how fun! It’s so nice to see Geli looking so healthy….last years photos are not as cheery!

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Daddy and his boys…

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After dinner, the excitement of the day was started to show and the little ones were wearing down…

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We played a few games….

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…..where did you go?….

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PEEK-A-BOO!

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And the big kids played games too….

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Finally, it was bedtime and we shooshed them all off to bed because we had one more day of fun still to go……

If you’d like to see the whole set of our Christmas Day Pictures, click here……

Minute by minute

The days this week have moved by so unbelievably slow (in the moment) and yet I blink and it’s lunchtime and then I blink again and it’s dinner time….followed by bedtime and then we do it all again.

It’s not easy juggling the 11 year old student with the 4 year old child and the 1 year old toddler BUT…..amazingly, there is less stress overall. My days certainly feel stressful when Jeremy is upset because he doesn’t understand something and then Siah started whining about wanting to play on the Wii and then Jeremy gets frustrated and yells at Siah for bothering him and during it all the baby is clinging off of me wanting……something, anything……in those moments – I breathe. And then I breathe again.

Settle everyone down, get a new activity for Siah to do, pick up the baby and try to talk Jeremy away from the ledge that he’s figuratively perched himself on.

It’s…..well, fun is very definitely the wrong word, but it’s…..it’s…..well, it’s never dull. Busy….i think busy is the right word.

We start off our mornings eating breakfast together and reading through a kids devotional story.

And in the middle of all the chaos, I’m okay. Tired…no, EXHAUSTED; often stressed about being able to really get through to Jeremy, sometimes worried that I will not have enough time or energy to focus on the other kids; I worry about being able to continue this beyond this week and yet….I believe that aspects of this will change and evolve. Somethings will be easier and some things, we will just let go of as we find a rhythm, a groove! All of us are learning right now. From the oldest to the youngest….we are all on this journey together and overall, I’m okay with it.

Our house feels more peaceful….less stressful. I asked Jeremy how he felt this first week was going and he shrugged. then I asked him if he felt more stressed, less stressed or about the same amount of stress as he had wile at school and he instantly replied with “less stress”.

So, That’s a good thing, I think!

I must find “me” time in the middle of all of this. Being “ON” all day is tiring and I’m definitely going to need to be very aware and careful to take care of myself.

Judah is sleeping right now and the boys are watching a movie while they finish lunch! Things are more or less quiet and I’m going to just sit and enjoy a cup of tea….until the baby wakes up…..which I hope isn’t for a while, but honestly I don’t have much hope for that.

Thanks for all your encouraging comments. I appreciate each and every one of them and each and every one of you!

Foundations

This is my view right now…

Schoolwork

And my other view…

Playing nicely

It looks very calm and peaceful and for one second it is….and then chaos erupts as we learn to work together. It will come. I am certain that we will all learn to work with, beside and together, but until then…..it’s interesting, to say the least.

We have decided to homeschool Jeremy for the time being.

There are so many factors that went into this decision and it was not a decision that was made lightly.

I feel somewhat conflicted about this decision and yet I believe that it has the potential to be the best thing for Jeremy.

We are going to be working with him on a bunch of foundational stuff. Not just math, reading and science….but we are working on keyboarding skills, organizational skills, typing skills, social skills and so much more.

Yes, there are moments of panic when I wonder what the heck I am doing, but somewhere deep inside of me under all the noise of the fear and dread that I might be messing my child up is this still small voice that says that we are doing the exact right thing for Jeremy at this moment in time.

And when I choose to listen to that voice….I have peace.

And so I’m going with the peace.

I figure that we will work through today. And there is a good possibility that tomorrow might look very different from today or….today might work SMASHINGLY and we will carry on with the plan from today.

I don’t know.

I don’t know if we are going to do this for the rest of this year, or for grade 7 too. Will we continue on for Grade 8 or will he join the public school system for High School?

I don’t know. At this point we are just working day by day and will see how this works for us. We have a goal…..

We want Jeremy to be the MOST SUCCESSFUL person that he can be. We want him to be well rounded and a contributing member of society.

Yes, he has things that our society deems are limitations, but I believe with everything in me that Jeremy has every capability of being a HUGE SUCCESS! We believe that he has the ability to learn all the skill necessary to be able to accomplish any dream that he has. He may need some coaching and he may need some creative help, but I believe in him.

We are working on foundational stuff that will help to set him up in an incredible way for if and when it’s time for him to go back to public school….

At this point, we are taking things day by day…….although I’m nervous about it all, I’m also very excited.

I’m looking forward to seeing Jeremy grow and become the amazing man that he is destined to be.