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.
I remember the day we lost Nathaniel so vividly. I remember feeling so lost, so empty…….so removed and yet so shockingly forced into a reality that I never, ever, ever in a million years ever expected myself to be in.
It felt like the very life had been ripped out of me. I remember holding my sweet baby and feeling so conflicted and confused. How was I supposed to act? What was acceptable? What was inappropriate? And under it all…….does it even matter anymore? How am I supposed to carry on when a huge part of me has died.
My heart felt like it had stopped and yet it traitorously kept beating. Not that I wanted to die, but I was in so much pain that even breathing hurt. And I just wanted to not hurt for a moment.
I remember walking away from the hospital thinking, “This is not how this was supposed to go. I am not supposed to be walking away from here empty handed. I am leaving my heart behind, here in the hospital” and yet there I was. No bags full of presents and baby things, no heavy, awkward car seat, no baby….just the pain and the grief that overwhelmed me……threatening to crush me. I forced myself to move one foot in front of the other. I had kids, I had a husband. I had a life that I had to carry on with and yet……..my life had stopped. Very few that I knew, understood what I was going though and even though there were ones who did……I still felt so alone…..so lost.
This was my grief to bear. My baby I lost. My life to live……if you could call this living.
The emptiness, the loneliness, the hurt, the tears…….all came rushing back this morning. It’s been just over 7 years since we lost Nathaniel and while thoughts of him no longer consume my every day….there are moments when the loss hits me so hard that it takes my breath away and it feels like I’m back there in that moment.
This morning I’m hurting. I’m hurting for those who hurt. I’m hurting for myself. I’m hurting for my loss and your loss.
These little ones….they are our sons and daughters, but they are also our grandsons and daughters and our nieces and nephews, our cousins. The loss….it’s all our loss. Regardless of their time here on earth, these little ones leave a huge impact. There are holes that can never be filled and lessons learned in love, togetherness, understanding, gentleness, caring, kindness and compassion. In spite of their time here on earth being shorter than we had hoped or wanted….their legacy lives on in the everyday actions of those they leave behind.
But today….I hurt. I hurt for you and I hurt for me.
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……
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 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!
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!
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!
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….
….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.
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!
So I’m sitting in front of my happy light crying…..how ironic is that?
I do believe that I’m about due for that whole monthly thing within the next week (I apologize if that’s TMI for ya) but even knowing that doesn’t really make me feel that much better.
I don’t feel Christmas-y AT ALL! I’ve been going through the motions, trying to convince myself that “I’m SO EXCITED that its Christmas time” because….well….because I typically LOVE Christmas and maybe, just maybe I can convince myself into being happy and excited about Christmas instead of just wishing it were over already!
This is a tough year. We are still in the trenches of our fight against cancer, but the intensity of the situation has lifted just enough that we can look around a little and breathe. In some ways, that feels just as bad as when we were in the thick of it all and all we could really concentrate on was just getting through the day. At least then, we didn’t really have the time or energy to see what we “were” or “were not” doing. We were just trying to do our best and to “exist” through a very tough time. Not that I have a lot of time or energy right now, but I do have a little bit more than I did back then…..YAH for small victories….sorta!
I was listening to the radio as I drove the kids to school this morning and a story came on about a little boy who was diagnosed with Leukemia when he was 4. He’s now five and the the radio station was raising money to help make this an amazing Christmas for him and his family. They mentioned the part where he’s been in treatment for the past year and that he has another 2 years of treatment to go…..My first throught was…..That’s horrible! That’s such a long time. My second thought was…..Oh Yah! That’s where we are at!
We don’t have to go through two more years of treatment, but we do have to go through another year of treatment and it’s tough. I cried for that little boy’s family. I know what they are feeling. I know how tough it’s been for them. I cried for our family. It’s been a tough year and a half.
And so I cry. I try to pull myself together. I turn my Happy Light on and dream of sunshine and warm beaches…..
But, the baby is asleep and the house is a COMPLETE DISASTER. I need to pick up toilet paper and I must ship out some orders. (thanks for your support – you guys are amazing!)
I’m trying to figure out how to have or take some “ME” time. I think that it’s so important to be able to have time to recharge and relax and de-compress and yet….it’s tough.
I remember these years when you have littles around far to well. When it was just Josiah, it seemed SO MUCH EASIER, but somehow the two little ones keep me hopping ALL DAY!
I’m squashing back the “mommy guilt” as I’ve let Josiah play video games this morning. He’s not been allowed to play on the WII for 2 weeks and he only gets about 1/2 an hour of a show or movie at lunch time and so I know that it’s not bad if he has one “off” day. I think that the hardest part for me is that he asks so often for the games or movies and I just wish that he’d play more….
There really is not good point to this post…..that’s brutal!
Well, the point is that I’ve got to figure out a way to have some “me” time. Not sure how, but I know that I must…..
Do you have any suggestions? Ideas?
I used to go and do yoga for an hour and half 3 times a week and right now that’s not in the budget, but I’ve got to figure something out.
What I really want and I’m totally dreaming here….I want 2 weeks on a beach in a hot place. I want to be able to sleep for the first week and then really enjoy the second week. That sounds like an amazing way to recharge, but then again it doesn’t help me with a regular “down time” and I’ve got to figure that out too.
