ME – Page 13 – xangelle.com

Trying to Hold On

It’s been a long two years and I’m finding that I’m at the end of myself.

I’m tired. I’m exhausted. It’s more than just an “I have a 2 year old who wakes up at 5am” tired….

Napping yesterday with Judah

It’s more of an “I have no idea how I’m still standing but I must carry on……” kind of tired.

I have no energy to call anyone or reach out to anyone or respond to e-mails….in fact, I am spending a ridiculous amount of energy just attempting to put these blog posts out there.

I want to be able to “DO” things, but I have no reserves left to draw from.

There are things that bring me life and although there is a small part of me that desperately wants to do these things……I don’t even really want to do them….and yet I do, in the hopes that I will be able to remind myself of who I was before “ALL OF THIS” happened.

And so, I make soap……which exhausts me and requires that Jon be there to walk me through it because I’m scared that I’ll make a mistake, forget something and wreck it. Something so stupid as following directions and mixing ingredients….much like making a cake……wrecks me. And says a lot to me about where I am at….

And so I blog, even though I have to think and think and think and then delete; because what I’ve written isn’t what I want to say…….and that makes me feel so stupid because normally I LOVE WORDS. I love to be able to use words to share and encourage and inspire and even something that is normally first nature for me, requires a ton of effort…..and that says a lot to me about where I am at…..

I’ve been seeing a counselor for a while now because I want to feel better and in some ways I am, but it also feels like the more that I acknowledge how tough this journey has been and is….and the more we walk away from the intensely stressful times, the more difficult it is to hold myself together and continue carrying on. ~~It’s like~~ I’ve been living on adrenaline for the past two years and that alone is exhausting. The stress has done a number on me both physically and mentally.

Someone’s having a sick day today. Middle of the night barfing sessions are NOT cool.

About 2 weeks ago, I said to Jon that I really needed to get away. Like, for my overall well being, I needed to get away. I’ve not wanted to “go away” because there were too many things that were unstable and the kids needed us……but I’m in a place where if I don’t get away….I feel like I will break down beyond what I can continue to hold together. I already feel incredibly broken.

I feel like, if I were a wagon….I used to be useful. I could carry many things and heavy things and now…..now I have a giant crack running through me and my wheels are broken and the straps and connectors that hold me to the “life” that is pulling me forward are so compromised. I feel like I’m sitting some place not useful or good for anything. And to be honest….it’s a horrible feeling. It’s a horrible feeling to feel like you HAVE to do things and to physically make yourself do things, like cleaning and laundry and meals and yet to not have the energy to do them. I don’t mean that in a flippant way, but literally….every time I do something, I am taking more and more out of my very being and there is so little left…..

I feel like this sounds so dramatic, and in someways I worry that it may come across the wrong way and yet…..to be honest, I don’t even have the energy to really get a good “worry” going on. Which in some ways, I guess is good, because we shouldn’t worry, but in other ways, it says a lot to me just about how rough of shape I am in because although I shouldn’t admit this….I have been a champion worrier in the past…….

Jon has booked some time away for us. Just he and I are going to Cabo at the beginning of July. It’s officially less than 30 days until we leave. I am so looking forward to a week of nothing. No responsibilities….no cooking….no cleaning….no one wanting me or needing me or taking from me….

I’m planning on sleeping and sleeping and sleeping some more. Sitting in the sun. Eating. I will probably cry….grieving all we’ve lost. And then I will come home; and I hope & pray that I will have a bit more to give, because I have ones who require it of me.

Waking Up Happy

Escaping it All

About a month ago, right in the middle of a whole bunch of really bad appointments regarding Geli’s bones….I decided that I needed a break from everything.

Jeremy had just been doing a section in his Social Studies on the Watershed and the rain cycle and I figured that a trip the Lynn Canyon was EXACTLY what we needed.

I didn’t tell Jeremy that we were “going on a field trip” until it was time to start school. He was SO EXCITED!

We packed up and headed out to North Vancouver. We started our adventure at the Ecology Center.

The large majority of my pictures are blurry because the boys were having SO MUCH FUN and moving so fast that it was tough to get a good (clear) shot in.

They LOVED the hands on exhibits and Jeremy loved how so much of it had to do with what he was learning. While homeschooling is not EASY by any stretch of the imagination, I love that I’m involved with him and his learning. It’s so cool because we were able to pull in aspects of Language Arts, Science and Social Studies into this one field trip. I love that. And he was excited to show me what he knew and how it tied in…..I especially LOVE that HE IS EXCITED about what he is learning. That just about makes up for all the frustrations that we go through.

Siah LOVED the bones. He was enthralled by them.

After we left the Ecology Centre, we walked down to the Suspension Bridge. It had been WAY too long since I had been to the Canyon and it was so good to just escape from everything and to get lost in the beauty of the forest.

Jeremy helped Siah walk across the Suspension Bridge while Judah CLUNG to me for dear life. He really wasn’t sure that he liked the moving, swinging bridge.

We took our time meandering down the trail. We stopped to check out the stumps and to count the rings on a recently falled tree. Jeremy thinks this one had 120+ rings? I didn’t count.

Judah was desperate to get down to the water on the other side of this fence. He was pretty adamant that he should be in the water and not upon the trail.

It was so much fun to have no time frame, nothing pushing us, no schedules to make….we just WERE….

I’m very much a driven person. I try so hard to stay present and in the moment, but so often I am thinking of what needs to happen or what should be happening and I’m so aware of what we aren’t doing and on this day, I was so very aware of us and where we were at mentally and emotionally and I tried so hard to just “BE”….to just be with my boys. To not worry about how long it took us or how many detours we took or what we stopped to look at. The boys were enjoying exploring and running and climbing and I was enjoying them just enjoying everything. There was really nothing that they could do wrong and so we just WERE….

I remember us as kids (my brother’s and sister’s) climbing this rock and it’s fun that my kids now get to experience that as well. I remember how HUGE it seemed to me then and when I look at it now it’s still pretty big….

It was nice to see the boys playing “together” instead of fighting against each other.

We finally made it down to the 30 foot pool. Beautiful, isn’t it? And this picture does nothing to represent the actual beauty of the place. It’s incredible. I grew up doors away from the Canyon…I was so blessed.

We climbed down the rocks and sat by the water and ate our lunch. I love the look on Judah’s face….mine – not so much, but man, is he cute!

Josiah and his celery stick give it two thumbs up…

We hung out for a while, threw some rocks, climbed on the rocks and then slowly started making our way back to the van.

Josiah was much braver, crossing the bridge for the second time……

It was such a nice and so needed escape from everything. We came home feeling slightly recharged and in the middle of all the craziness….that is such a good thing. We are looking forward to our next escape to Lynn Canyon.

Laughing Instead of Crying

I’m laughing right now, because the other option is crying and well………I just need to laugh instead.

This is SO ridiculous. Like you wouldn’t even believe it…..I mean, maybe you might, but seriously….I almost can’t even believe it and I’m living it.

Judah had diarrhea for most of the day yesterday and yesterday evening, I went to change yet another diaper and……..found a worm.

No, I don’t mean one of those squishy, squirmy earthworms….I mean a PARASITE!

And it was still moving. *let me throw up a little in my mouth here*

So I freaked, I panicked and then I pulled out my Google medical degree and got to work because it was after hours…..of course it was after hours….you think this would actually happen WHILE my doctor was in the office…..no, of course not.

I don’t even know where to go from here – storywise, I mean….

I read. I read a MILLION articles. Determined that these little wrigglers living in my son’s gut and diaper were pinworms or threadworms…..same thing. and that they are extremely common……like 4 out of 10 kids have ’em. YUCK!!!!!

Changed another few diapers (I already mentioned diarrhea, eh?) and found a few more worms…….DOUBLE YUCK!!!!

Judah’s been sleeping really poorly the last few nights and waking up crying and saying ouch and squirming around fussing at his butt and more than a few of the articles talked about “your normally angelica child becoming irritable and fussy for no apparent reason” while I wouldn’t give him angelic, he’s definitely been WAY fussier in the last few days than normal. Coupled with the lack of sleeping, appetite that’s been off, and lets not forget about the ACTUAL WORMS!!!!!! TRIPLE YUCK! It’s pretty safe to say that he (and by extension, there is a good chance that at least the majority of the rest of us) has worms.

While I would have much rather talked with my Naturopath and gotten some natural parasite killer….would ou belive that her offices are closed on Wednesday….ya when did we find the worms….ya that’s right…on TUESDAY EVENING…after her offices were closed too. Unreal. So rather than waiting for a few more days…..Jon went to Shopper’s Drug Mart and talked to the pharmacist. She showed us this medicine – Combantrin

One dose will kill the worms currently living inside of you. And then you need to take another dose in two weeks to kill any more worms that grew from the eggs that you still had or that you picked up from within the house…

Apparently the home protocol is very similar to the home lice protocol and in fact, apparently, these little guys are WAY easier to eradicate than lice are. Which I guess, if I’m looking for silver linings….I guess that I’m glad we have pinworms and not lice…..if I can even wrap my head around such a statement.

And so, the de-worming has already begun…..meds have been taken and I am currently on a rampage against the little wormies…..that just sounded wrong. Almost cute and in my mind, this is anything but a cute situation.

Please reassure me that you or someone you know has gone through this and that I’m not the only one. Supposedly this is not an indication of poor hygiene, just like lice are not a reflection on poor hygiene. I can read that and know in my head that it supposed to be true, but BOY OH BOY…..am I ever struggling. …

I didn’t need this right now. Not that anyone ever needs this….but seriously…..this is not exactly reducing the stress load in my life.

So, what say you…….say something…please (yes, I’m begging)

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!

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!

Through The Valley of the Shadow of Death

Amplified Bible (AMP)
Psalm 23
A Psalm of David.
1THE LORD is my Shepherd [to feed, guide, and shield me], I shall not lack.

2 He makes me lie down in [fresh, tender] green pastures; He leads me beside the still and restful waters.

3 He refreshes and restores my life (my self); He leads me in the paths of righteousness [uprightness and right standing with Him–not for my earning it, but] for His name’s sake.

4 Yes, though I walk through the [deep, sunless] valley of the shadow of death, I will fear or dread no evil, for You are with me; Your rod [to protect] and Your staff [to guide], they comfort me.

5 You prepare a table before me in the presence of my enemies. You anoint my head with oil; my [brimming] cup runs over.

6 Surely or only goodness, mercy, and unfailing love shall follow me all the days of my life, and through the length of my days the house of the Lord [and His presence] shall be my dwelling place.

This passage keeps running over and over inside of me. Different aspects of it hit me at different times of the day and the night.

The Lord is my Shepherd. He will feed, lead and guide all of my and our steps. I will lack for nothing. He provides a place for me to lay down and be at peace and rest. I can feel safe and secure, knowing that He has made a quiet, peaceful place for me to relax when I feel tired or overwhelmed. I can be still knowing that He is in control and caring for me. He refreshes me and restores me when I feel worn down and so tired and so very, very broken. He does lead me into places of uprightness and right standing with Him, because He loves me and Geli and us. Even though we may be walking through a very deep, dark valley and may feel like the shadow of death has touched us with it’s evil and destruction – I WILL FEAR NO EVIL. I will not fear anything because HE IS WITH ME, WITH HER, WITH US….every step of this journey. He will never leave us nor forsake us. He protects us and guides us and in spite of all of our pain, or hurt or confusion or anger – HE COMFORTS US! He provides for us in the middle of all of this garbage. In spite of all we have gone through, in spite of all we are are going through….my life is full of love and joy. Goodness, Mercy and His Incredible Love is with me every moment of every day and I choose to live within His LOVE and PRESENCE all of my life. Nothing shall sway me from this, not life nor death.

Angelica is on the list to get new knees. In all actuality, her shoulder is WAY worse than her knees, but she doesn’t walk on her shoulder. And so, from her standpoint, dealing with the pain in her knees is a higher priority.

I’m very aware of exactly where we are at, and we are taking the steps that are medically necessary to replace her knees, and her shoulder will be shortly behind that. We believe that there is SO MUCH GOOD that the medical profession can offer to help us out.

And in spite of all of that, I am praying for Angelica’s healing.

I would love if if you would stand with me and support her and us with your prayers.

I believe that….. “Where two or more agree concerning anything, it shall be done!” and so I’m asking for two or three….or many, MANY MORE…..to stand with us to declare healing for Angelica.

Looking at the reality……we need a miracle. Aside from the replacements…..that’s the only other possibility. I’ve seen the pictures of her shoulder bones and the left one has collapsed. There is no natural possibility for healing or regrowth outside of a miracle.

And so, I’m asking, praying and believing for a miracle.

I would like to invite you to join with Jon and I and more importantly Angelica as we pray and believe for healing and new bones for Angelica.

I realize that to some of you who don’t believe, this may sound crazy. And maybe, I’ve gone crazy….there has been a whole lot of stress over the past 2 years. But………in my mind, as much as it might be good to have knee replacements instead of pain and eventual immobility for the rest of her life……the best thing would be to have new, healed and restored bones. Until the moment that they cut her open to put new knees and other joints in….I will pray and ask and believe for God to work a miracle in her life and in her body. At this point, we have nothing to lose….

Angelica doesn’t finish treatment for Leukemia for another 6 months. The list for new knees has a 6-9 month waiting list….and so the timing works out well for her to be on the list starting now.

She starts physio and OT on Monday at GF Strong.

For those of you joining us in prayer, here is a list of things to pray about:

1. New, Healed Bones for Angelica. Currently they have said that her knees, shoulders, hips and elbows are showing signs of bone death….but we want everything in her body and mind to be healthy!
2. We are all feeling quite emotionally tired, fragile and broken. So prayer for strength and comfort, peace and joy.
3. Geli is so tired of feeling physically exhausted all the time. She’d like to have energy to be able to enjoy life.
4. Geli is starting physio and we want her to be able to build as much strength in her body as possible.
5. Prayer for sleep….restful, peaceful sleep for everyone in our family.
6. Strength for us all to be able to keep going on in spite of how tired and worn down we are feeling
7. Protection for our family that each and everyone of us would be safe and healthy
8. We have had so many things break on us recently…our microwave, my laptop, our toaster over, our scale, my breast pump, and I know there are more that I’m not remembering, but we’ve had enough…..this all needs to stop. It’s a drain emotionally as well as financially!
9. PEACE!!!!!! in every area of our lives and minds and bodies……for all of us.
10. Employment – Jon’s job is very uncertain right now. He is a contractor and currently working for a GREAT COMPANY, working amazing flexible hours and making enough to support our family. His contact is up as of March 31st and his boss has applied for his contract to be extended but the boss’s boss has not not yet signed off on rolling over the contract. Jon would love to actually get hired on full time at this company, with benefits and a regular salary, but even just a contract renewal would be amazing.
11. Mini-Vacation – Personally, I’d really love to be able to get away as a family. Somewhere not too far away, but where we can relax and just escape! I’m just gonna be specific and say that I’d love to be on a beach somewhere to hear the waves crashing and smell the salt water and feel the wind on my face, but honestly….any where would be nice.

Thank you for all your support. Thank you for your kind words. Thank you for your encouragement. Thank you for your prayers. We need them now, more than ever.

Normal is gone……and we grieve

I lay beside her on the bed tonight, cuddling her…my arms wrapped around her while she sobbed and wailed as if her heart had broken. I held her and whispered quietly, my lips against her shoulder, “It’s okay to cry. Just let it all out.”

The sounds coming from the very core of her….so hurt and wounded and broken and tired…..so very very tired.

She cried until she was spent and then she lay, breathing jerkily, as she tried to settle.

***************************

We went to see the Rheumatologist early this morning. He gave us news that no one wants to hear. Especially not a child……

Double Knee Replacement!

Shoulder Replacement!

Most likely looking at bone death in the hips and the elbow and who knows where else…..

Possibly hip replacement in the future…… who knows about the elbow.

He would need to look at the previous X-rays and we’ll probably need more in the future.

It’s a lot to deal with.

I’m not coping very well. She’s struggling. We are all struggling.

This is tough.

So painful.

She’s looking at knee replacement surgery after treatment ends in 6 months.

She’s already feeling like Grade 8 and Grade 9 have been taken away from her by cancer and now to hear that grade 10 will be taken up with bone and joint issues…..

This just feels like too much.

For all of us.

We are hurting and wounded and broken and in the moment, it feels impossible to think about how we can possibly recover from this.

I try to put as many positive spins on this as I can. To think about those we know who have overcome great obstacles and even faced death and now are thriving, but in the moment……

It’s overwhelming and we cry…..

And we hurt and we wonder how we will carry on and yet…….we must!

We will get through.

Nothing will ever be as it were.

Our old “normal” is gone……never to be found again and we grieve. We grieve hard!

We must find a new normal.

Again.

It’s getting harder and harder to think about creating new normals.

It’s getting harder and harder to try to create new normals.

It’s getting harder and harder.

It’s just really hard!

Tonight is a bad night.

Hopefully, tomorrow is better!

What are you Thankful for?

It’s Monday morning….well, it’s almost noon and I’m sitting on my couch….in the sunshine….in the quiet……well, it would be quiet if Geli wasn’t hacking and couching and sneezing in the back ground. She’s stayed home another day from school. She woke up this morning with some “gastro-intestinal issues” and that’s all we’ll say about that. It’s all just a part of the stupid virus. I can’t wait for it to run it’s course and be gone from our house.

My mom came by this morning and has taken my boys for a walk. It’s nice cause they’ll get back, we’ll feed them lunch and then the baby will go for a nap. That’s some good timing, as far as I’m concerned.

Things are okay this morning. I’d be lying if I said that I bounded out of bed this morning, ready for the day. Certain that today was going to be a good day. It was more like I rolled out of bed ’cause the baby needed a diaper change. And then I folded 3 loads of laundry before even heading upstairs.

We managed to get breakfast made, school started and the house somewhat tidied and so right now things feel peaceful. I know what’s happening for dinner and I will put it in the oven in a few hours. There are no appointments, or places to be or things to pick up and so today is a quiet day.

I’m noticing that right now, my patience is not at the level it normally is. I snapped at Jeremy this morning instead of calmly explaining to him why it’s not a good idea to shout in the hallway when his brother is still sleeping. I don’t like being rude or disrespectful to my kids. I’m trying to teach them to talk respectfully even when they are frustrated or tired or upset and so to model the very behaviour that I’m trying to teach against……frustrating for me. It’s all a lesson, isn’t it? I get to apologize and explain what happened and how it’s not okay. We hug and move on….it’s just life lessons, but it speaks to me of how little I have to give.

I’m not hopeless. I’ve not given up. I’m just tired. Imagine if you had been walking in the desert for a month and you knew that just over that hill in front of you was a town and there was water, food, a bed….rest……and you just had to make it there. You’re exhausted. You don’t want to carry on, but there is no point in lying down and dying now. The end is close. Your dessert experience won’t last forever, but…..you are tired. You don’t feel like you can take another step. All you want to do is to lie down. But if you do….you will end up losing out on everything that you struggled for….that you fought for….all that pain and energy was, then, for nothing.

Sometimes, you just need to sit down and cry. Let all of the pressure off. And then you pick your tired self up and carry on……that’s where I’m at….I’m carrying on.

We all go through things. Have I ever wished that I was not going through this…..OF COURSE! Do I wish that I had a close friend, someone who really understood……honestly, as nice as that would be….NO! Because that would mean that you were going through this and I wouldn’t wish that on anyone. Sure, I’ve looked at you and wondered why “I” am going through this horrible time in my life. And then I remind myself that WE ARE ALL going through things….Life is a constant state of living and dying…of good and bad….of tough times and easy times.

I’m so aware of the tough times right now because there seems to be so many tough things going on in my life and yet, I try to keep aware of the good things in front of me….I have so many good things. I have an amazing husband….who I don’t get to see nearly enough. But isn’t that amazing that after 16+ years that I want to have more time with him and not less. I have 5 amazing kids. I am all so proud of each of them. They work through their own struggles and come out winning, and loving and embracing life. My family is amazing and well,…..I’m alive and breathing.

Alive is pretty good, no?

Today I’m choosing to be thankful….. I’d love to hear what you are thankful for, if you wouldn’t mind sharing?

I’m thankful for Jon and my kids.
I’m thankful for my health.
I’m thankful for my home.
I’m thankful for sunshine.
I’m thankful for my momma.
I’m thankful for this quiet moment.

What are you thankful for?
There are no wrong answers……

seasons change……….

It’s been a while since I last posted.

We’ve been trucking along and then……. I don’t know what happened. This last week was horrible and by Saturday I fell apart.

We slept in until 8:30am (That’s a sleep in ’round these parts) and then I got up and went to my exercise class where I managed to finished the first third of the class and then I started crying. And crying and crying and crying. So much so that the girl in front of me stopped her practice and gave me a box of Kleenex. I managed to sort of pull myself together (or not) and hung out through the rest of the class and then went home. And then spent the rest of the day crying and crying and crying and crying.

It’s all just too much.

I don’t know how else to put it. There is too much. Too much for one person to handle. Too Much Stress. Too much pressure. It’s just too much.

Xani got sick about 2 weeks ago with some killer nasty cold. She made it through the first week hacking and coughing and sneezing and then the two littlest boys picked it up. Saturday night Josiah woke up unable to breathe. That’s scarey, eh? His panicking didn’t help the situation, either. But, what would you expect if you woke up in the middle of the night and couldn’t breathe? He had a fever from Saturday until Wednesday when it finally broke. I figured that we were just dealing with some nasty virus. The Baby started in on the coughing on Sunday and rocked out a fever then too. By Thursday night when his fever was still in the 39-40 degree range, I was starting to get worried. He was so cranky. So whiny. So tired. So upset. Not eating, not drinking and starting to not wet his diapers. I took him to the clinic where the dr diagnosed him with a lower left lung infection and put him on antibiotics.

There was a massive issue at the pharmacy because they didn’t have the antibiotics that the dr had ordered and there was a HUGE run around trying to get a new prescription. It was unreal. The pharmacist dude was unreal and we know them by name – We spend a lot of money at this pharmacy. I’m not sure what the problem was today…maybe he had a fight with his girlfriend before he came to work or something….it was awful……we finally got it sorted out and started Judah on the antibiotics late on Thursday night. He was still feverish on Friday morning, but by late afternoon the fever was starting to come down.

Friday morning I got a call from Geli’s nurse, saying that her counts were really low and that we had to stop chemo and that they’d like her to be taken into our Dr or a clinic or something just to get her chest listened to. She started feeling crappy on Monday and didn’t go to school the whole week either. She had a low grade fever for most of the week. Just before we were taking her to the clinic, we took her temp and she was at a 38.1 – when she is neutropenic (has really low infection fighting counts) we have to take her into the hospital anytime she scores a temperature of 38 degrees or higher. If she has normal counts then we have to take her in, if she has a fever over 38.5. We chocked it up to the smoking hot bath that I had just pulled her out of and carried on down to the clinic. Her lungs sounded clear, but the clinic dr clocked her temperature in at 38.7…….so Jon called the hospital to let them know they were coming in and they came home to pack up.

We were not sure what to expect. Worse case – she’d be admitted for 3 days. Best case, they’d come home that evening but needing to go back for a 24 dose of antibiotics.

They did get to come home. It was viral, but it rocked us. We have been been so battered and beaten over this past year and half that we have no reserves to stay strong about this. I felt like I was in shock that night. Jeremy was crying off and on because they had to go. The babies were sick. Jon and Geli were gone for who knows how long. I just emotionally and mentally shut down. My mom came over and she helped with the boys and took Xani to youth and picked her up while I tried to clean the house so that we could “carry on” on Saturday. But inside I just felt dead about it all. I have to do this. I can’t just not. I have no time to just be. I have no opportunity to get away from this all. For the past 19 months, we have fought and fought and fought and fought and I don’t know how much fight I have left in me.

A friend stopped by to drop off a few groceries that I needed and we were talking for a moment and I shared with her how I feel like I’m in a bad dream or a horror movie. There is just one bad thing after another after another and I can’t see the end to it all. I know this sounds bad. I know this sounds down. I know this doesn’t sound encouraging and that’s how I feel.

I’m so tired. I’m so worn out. I’m exhausted. I don’t know how I will be able to make it through the next 9 months.

I feel like I’m barely existing. It’s a horrible place to be. There are so many things that are hard right now. I am trying to hold onto faith and hope and yet……..honestly……it’s really tough.

And that’s how I came to yesterday…..I spent most of the day crying. I crawled into bed at 6pm finally fell asleep at 8pm. I woke up at 2am, at 3am, at 4am, at 5am, at 6am and then slept until 8:30am…..sleep evades me this past year and a half…..even if the baby sleeps, I wake. There is so much going on. So many things that have gone wrong. So many things that I’m trying to organize and manage and sty on top of……so many other things that I can’t do anything about……

This is a very tough season…..I can’t wait for this season to pass…….it must!

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!

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