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.

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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!

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….

DSC_0155

….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.

Geli here

Hey everybody! I was thinking about selling some paintings for Christmas, and wondered if you had any ideas of what I could paint. I have one idea: a Cancer Ribbon Butterfly, (look up pictures on Google, I can’t do the hyperlink thing) and was wondering if anyone was interested in that??? They’ll be biggerish paintings, I have two 60x80cm canvases. So if you could give some examples of something you might like, I’ll see what I can do and put them up somewhere (still not sure where yet) and sell ’em.

Gelica’s Christmas List – From Gel

Hey everybody, every year mum gets us to post our x-mas lists so grandparents and other family and friends can see what we want for Christmas, so here’s my list.

– Soft colored pencils
– Kneaded eraser
– 2nd + Narnia books
– 2nd + Percy Jackson and the Olympians books
– Themed Monopoly
(but not: M&M, Disney 3rd edition or Monopoly Deal)
– Subway, Starbucks, Chapters, House of James, iTunes and/or mall gift cards
– WHITE, 4TH GEN, 32 GB IPOD TOUCH
(OR BLACK)
– Nail polish: light brown, light green, blue, orange, yellow, purple, black, white, hot pink, red and/or other colors
– Stephanie Smith, Gungor, and/or Adventure in Odyssey CDs
– Eye shadow: soft, light colors                                                                                                – Laptop
(preferably Mac)

This and That and The Other Thing

I’m not sure why but the baby has started to take a nap on the couch. What I mean is that if I nurse him, he will fall asleep and then if I put him on the couch….he will stay asleep. If I put him into his crib….not so much. This makes no sense to me but if I can have a few minutes without someone whining and clinging to my pants legs…..then I’m just going to go with it.

Sleeping

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I’m EXHAUSTED. I’ve been on the go since November the 13th because I’ve had one thing or another planned. First I was trying to get ready for the Craft Fair, and then I needed to get ready for a Christmas Party/Cookie Swap and I also was feeling quite a bit of stress about doing the whole Hospital/Chemo thing by myself….

Today is more or less a down day except I have to pile ALL the kids into the car and take Geli and Jeremy to see our Family Dr. later this afternoon. It always feels stressful when I have to take all of the kids somewhere especially when there is a fairly good opportunity to act out or misbehave.

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I’m trying to figure out what we are going to do about Christmas this year. With Jon being laid off from work and the lag in getting his next paycheck, things are tight. I’m trying to figure out what I can make – as in homemade gifts – but there is always this guilt that the kids are going to be disappointed. I know that in the grand scheme of things that life and love and togetherness are the most important, but as parents we want to give our children special things, right? I have been talking with the kids about “giving” as opposed to receiving and I do know that things will work out okay. I just seem to do really well when I have a plan; when I know exactly what I’m going to do or what to expect….I’m still trying to figure things out and to be able to do it without feeling frazzled or stressed.

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I’m really trying to eliminate stressors from my life. I want to be able to enjoy life and to not be stressing about too many things on my plate or about all the things that I could or should be doing. It’s not so easy to find the balance and yet I’m really working on it. I’m trying to live within my capabilities and to be able to really enjoy “living” life and not just existing. I’m trying to be present for my family and with my kids. This is also not as easy as it sounds like it could be and yet…I believe it’s doable. I’m also trying to embrace the season that I’m in.

I’m a mom. I have two little boys. I remember how much work it was when I had three little ones (Geli, Xani and Jeremy) because I’m right back in the thick of those early days. Siah is 4 and Judah is 1 and it’s not an easy phase. What I have going for me is that I know that it won’t last forever and that I want to really enjoy this time with them. It’s tough. It’s exhausting. It’s messy. There is a lot of whining and diaper changing and wiping runny noses and cleaning and tidying and doing the same things (like rescuing a child from on top of the table, building block towers, or reading the same 2 books) over and over and over again. There is little sleep and even less “me” time, and yet, when I look at these little boys….at all of my kids, I’m so thrilled that they are mine and I’m awed with the responsibility of raising them. I believe in them and will try my best to raise them to be amazing men and women. It’s a lot of work, but they are worth every bit of time and energy.

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We had our day at the hospital yesterday and for whatever reason, the Oncology clinic was PACKED with kids and parents. At one point every seat was taken, inside and outside of the clinic and there were a TON of parents and kids standing. This meant that the 1 hour appt took 4 hours. Which SUCKS SO BAD! And, the whole deal with Angelica and the itching that she’s been experiencing…..nothing. They don’t believe that it has anything to do with the chemo or anything Oncology related and so we are just to Monitor it. That’s not so cool as far as I’m concerned. I don’t know what to do exactly and I’m just hoping that things will get better and not worse. I’m hoping that Geli will “test the waters” so to speak, tonight and we will see whether or not things are improving, holding steady or getting worse.

Aside from the itching, Angelica is doing okay. She is on the mend, but it taking longer than is normal or expected…..Normal is really not a good term for it….because really, what is normal?

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I’d love it if you’d check out my shop. There are some great products, in there.

Simple Choices

I think the favorite products right now are tied between:

the Lotion Bar – EVERYONE who has tried it has RAVED about it.
the Calm Room Spray – it can be sprayed in kids bedrooms to help settle them down
the Breathe Cream – to help with congestion, due to coughs and colds
the Refresh Cream – to help with headaches, digestive issues, sore muscles and for a general “pick-me-up”

And everyone seems to LOVE the lip balms….the peppermint seems to be the winner right now.

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I’m hoping to be able to make a gluten-free Gingerbread house with the kids in the next few weeks. We’ve been talking about making small ones. I hope it works out. You can get the MOST AMAZING gingerbread recipe over at Gluten-Free Girl’s website. I made a batch which makes around 72 cookies and my kids have DEVOURED them. I have less than 2 dozen left….they are just that good.

Gingerbread

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Do you have a favorite Christmas Cookie?

I love Whipped Shortbread, and those Gingerbread Cookies up above.

And, the baby just woke up and so I’m done for now…..

Big Day

Today we are headed into BC Children’s Hospital for Angelica’s monthly Chemo appointment.

This is both newsworthy and old news all at the same time.

Angelica will be receiving only one drug injection today. This is her “easy” month. She cycles in 3 month sets. The first two months, she receives an Lumbar Puncture with Chemo into her spinal fluid as well as another drug injected into her blood stream and a oral steroid. On the third month she gets the one drug injected into her blood stream and the steroid, but not the Lumbar Puncture or spinal injected chemo.

All of this is old news to her, and she knows exactly what to expect from today’s appointment.

On the other hand, I have no clue what I am doing.

Jon has done the gross majority of the chemo visits while I stayed home with the babies. Because Jon is working, I am the one who must take Geli in. My sister will be watching my boys and it should be a 3 hour trip – travel time included – from when we leave the house until we get home…..barring any problems or issues.

Angelica has been doing well. She is slowly getting stronger and stronger.

Physically, she has not gotten better as fast as she could, mostly because she has not put the extra effort in that it will require to strengthen her weakened and atrophied muscles.

There has been one weird side effect that we have been struggling with recently and that it intense skin itching…..to the point of pain. After she takes a shower or bath, her arms and legs start to itch and because we don’t know why it’s happening we don’t know how to prevent it. We are going to be talking with the Dr. today about this and hopefully they have some idea….

It’s emotionally brutal because she does not want to bathe or shower and obviously that is not an option…she knows that it’s going to itch to the point of pain and then when it starts to itch, she falls apart. It’s tough because we have no idea why this is happening or how to fix it.

I have read a little bit and and we have been trying a few things and it’s possible that they might be helping. We have noticed some improvement, but we will hopefully know more later.

Pray for us today….I’m feeling nervous. I’m sure that everything will be okay, but right now…..yah, I’m nervous.