ME – Page 19 – xangelle.com

Temporary ADD

I’m so frustrated right now. I mentioned this yesterday, but it’s true.

I’m aware that we are dealing with a lot and yet……even knowing that, doesn’t change the fact that I’m frustrated because I’m not functioning well.

Typically I can accomplish a certain amount of things, I can make mental lists and not forget details. I can “see” the lists inside my brain and don’t even need a “paper list” or to use my Blackberry. I can remember dates and names and phone numbers and cross reference them inside myself. I hear Jon talking about his appointments and I can process and integrate all his appointments with our family calendar and pull up vague references and details at will……Reading all of that back, I sound a bit like a machine……but a super, awesome, shiny, sparkly, friendly, super cool machine, right???

Now imagine that machine with glue or honey poured into it. Yah, that’s how I feel!

I’m aware that I used to be able to function at one level and I’m annoyed that I cannot currently function at that level…..especially when that ability to process and accomplish could be SO USEFUL in our lives right now.

I have to write out lists or whatever I was thinking about…..GONE!

I even have a notebook, so that I don’t end up with 50 scrap pieces of paper, as that would just be more to lose or misplace.

It’s really bad when I can’t remember where I put my notebook and by the time I do locate it….what I was going to write down……GONE!

And then if I take the time to sit down and concentrate about what I needed or wanted to write down….I might remember 3 or 4 things that I had previously wanted to write on that list and had forgotten about but there is always that one thing niggling at the back of my mind that I know I’ve forgotten about. I think that knowing that I’ve forgotten something makes it worse, for me.

And then if I go to accomplish what’s on my list, without fail, I’ll finish what I’m doing and remember what it was that I forgot. Especially frustrating when it’s an out of the home activity that I’m trying to accomplish.

So Annoying!

I’m messing up dates of appointments, and am so far behind on e-mail and “the administration” of my house…..GAH! People say they’ve told me things and I have no recollection of it. NONE AT ALL!

I’m even……..GASP!!!!!! Inefficient these days. I hate being inefficient.

I LOVE BEING EFFICIENT! I’m sitting here trying to come up with a picture to explain just how amazing ,being efficient makes me feel and I’m aware how much time I’m wasting because “the words” just aren’t there. That fact is frustrating too.

It’s ALL frustrating. I try to see how this could be good. I believe that you can learn from most things in your life. I believe that, most of the time, you can take something good away from even the bad things in your life. And so even in the middle of my frustration, I ask myself – WHAT CAN I LEARN FROM THIS?

Yah, that’s probably pretty honest too….I’m probably screaming it out just like that, except……you know…… inside myself….because…well, I don’t want to scare the children or any small animals that might be close by.

It doesn’t take the frustration away or make any of this easier, but………

I can be more compassionate to those for whom “organization” and “administration” is not a strength. *ahem* Jon *ahem*.

Being serious though – compassion, patience, understanding, grace and mercy……these are all areas that I can grow in, be more aware of and learn from this situation. Because right now….these are all things that I’m needing from others and if I’m totally honest, from myself.

But…it doesn’t make it any easier and I’m still frustrated.

But it does make me stop and think….what are others going through? That girl in the line in front of me who’s staring off into space when she should be running her groceries onto the belt…..Instead of thinking about how she’s so slow or how I managed to pick the ONE LINE with the SLOOOOOOOOOW person – I want to think to myself…….What’s consuming her and why? The guy who’s driving slower than the posted speed…..instead of being mad that he’s making me late….I want to wonder why he seems so distracted? The lady in the store who’s kids are maybe just a bit too loud? Why does she seem so tired and run down? That person who was supposed to call me back and didn’t….Instead of thinking they were inconsiderate….maybe they got too busy or just forgot?

You never know what other people are going through. If there is anything I can take away from this…..

I want to be more compassionate.
I want to have more patience.
I want to be more understanding.
I want to have more grace.
I want to have more mercy.

Just being honest……….I’m still frustrated though!

Third Time’s The Charm

Well, I finally got the baby down…..after the third try.

It’s a little frustrating. Just when you think he’s asleep, he twitches and wakes himself up and WHAM…he’s not planning on going back to sleep anytime soon.

Or, you’re CERTAIN he’s asleep and you ever so carefully place him in his crib only to have him blink his eyes WIDE OPEN, the instant his skin comes in contact with his sheet.

OR…..you’ve basically crawled into the crib with him, to fake him into thinking that you’re still holding him, and you stay in that weird hunched over position so long that you’re entire back cramps up and your legs start to go numb, and you think that he’s relaxed into a deep sleep….you ever so slowly released the weight and pressure that you’ve put on him and BAM! Eyes. Open. Again!

and just when you’ve given up all hope of getting to have any free time in the evening, and you’ve basically slung him over your arm and are just ignoring him….you realize that he’s dead weight and has fallen completely soundly asleep. Based on prior track records, you have absolutely no belief that he will stay asleep, in fact you completely believe with every fiber in your body that the “INSTANT” you even make a move towards the crib, that his “sensors” will go off and he’ll wake up.

You kinda roughly plop him into his crib, kinda shove his blanket on top of him and run out of the room hoping that you can, at the very least, hit the toilet before he starts screaming and wakes up the toddler……

After about 15 minutes, you wonder what’s going on….you go in and check…all’s good, still breathing…Hmmmm weird.

Well, might as well attempt to get that snack you had been thinking about 2 hours ago…….can’t hurt to try, cause FOR SURE, he’ll be up any second.

At some point you realize that he’s actually out for the night and you’ve not accomplished what you had wanted to initially because you were basically waiting with bated breath for the little darling to wake up………and he never did. MAN!

Okay, so that’s not really what happened tonight, but it or some variation happens often enough around here for it to not be entirely funny and yet, 5th time around (I have 5 kids, just in case that reference made no sense to you) – I can appreciate it for what it is….just another season. He’ll be a better sleeper soon enough and until then, I’ll try to relax and not get too frustrated when I don’t accomplish as much as I’d like.

Jon and Geli left for the Hospital this morning just after 7:30am. She had a lumbar puncture scheduled for first thing, and was receiving chemo into her spinal fluid then; after that, she gets one dose of chemo; and then 6 hours of hydration before the THIRD DOSE of the Methotrexate.

She should be coming home on Sunday….which we are all looking forward to.

We were the best prepared and the least prepared for this third round of chemo.

We kind of know what to expect and what to prepare for. Geli was able to pack her clothes, her school stuff and her favorite foods with speed and ease. Jon packed all of his stuff up and I was left with the chaos of the other 4 kids and the house.

Xani had a bit of a “moment” last night. She couldn’t sleep. Didn’t want Jon to go away. Was Stressing. Not fun!

My big accomplishment today was to go shopping for Almond Milk, Soy Milk and Coffee Grounds. Yee Haw!

I fed the children super healthy, fresh-right-outta-the-box Chicken Noodle Soup. * snort * I win the Mother of the Year award tonight.

I think we’ll have fish and potatoes and veggies, tomorrow night, to try and make up for tonight’s amazing-ness.

I folded 2 loads of laundry today….there’s that, right?

Judah’s been having some similar issues to Josiah (when he was an infant) and I’ve gone absolute hardcore on cutting out all dairy from my diet. (There’s been some blood in his poop – in case you don’t know what I’m talking about.) It’s not fun and it’s just one more stress. I know that it’s dairy related and even just the 2 days of not eating any dairy has already made a HUGE difference. Judah’s not had any of the ezcema that Siah had, so that’s a bonus. He just tends to barf a lot, get a wicked diaper rash (I’m assuming because his “movements” are a little more acidic that they should be because he’s body is working overtime to breakdown any dairy proteins), and has had some blood tinged poop. I’m not FREAKING. We’ve had this happen before and way WAY worse. Josiah, at a health level with 0 being perfect and 10 being really bad, was at like a 14. I’d give Judah a 2….prespective….it’s all in the perspective.

But, my biggest issue and I’ve complained about it before….I LOVE CHEESE. I can find delicious dairy free chocolate. I can bake dairy free. I can cook dairy free, but…….I LOVE Old Sharp Cheese. I don’t mind some goat cheese, but if it’s too “goaty” ick! And that is the toughest thing for me about going dairy free. It’s really rough. You should all feel terribly sorry for me – I know……wah, wah, WAH!!!!!!

Ah well, I’ve gotta go and plan out my day tomorrow.

There will be a list with like 15 things that I want to accomplish….and then there will be the “List of Reality”….with the 1 or 2 things that I absolutely MUST DO!

Fun! Not!

Out for Tonight! Ciao!

Finding Joy

Right after Geli was admitted to the hospital (mid-Sept), I was really struggling.

I was sad and angry and upset and frustrated and so many other chaotic emotions. I was sitting on my couch feeling sorry for myself and right in the middle of a fairly awesome pity party, I decided to stop. Feeling sorry for myself wasn’t helping me very much and so I thought I’d try to look for things around me that I find joy in.

Right in front of me, on my ottoman, was my diaper basket. It’s where I keep my diapers, wipes, a few burp cloths and receiving blankets and sometimes some books or toys. I had just re-stocked it earlier in the day and I had created a rainbow from the diapers. The sun was shining in through my windows and….well…..it made me smile a little. So I went and got the camera and decided to take a few pictures of some things that made me feel happy.

The baby was sleeping, and so I figured that at the very least I had a few minutes to look around and freeze those moments for myself. It’s so nice when babies sleep. Mmmmmmmmmm snuggly babies! Just the thought makes me smile.

At first, it was a little bit slow to find the things that brought me joy, but once I started really looking…….I realized that my floors were swept and mopped and man, did they ever look good. I never used to clean my floors all that often and now I have to and while I don’t enjoy cleaning them…..I sure do enjoy them cleaned.

As I wandered into the kitchen, I saw the vegan Banana Bread Muffins that I had made earlier that day…….and they were DELICIOUS! Another smile!

On the corner of the counter were the supplies from the Birthday party that we’d just had for Xani and the bright cheery colors made me smile again.

All of this smiling was pretty amazing, as I’d spent most of the two previous days crying and feeling quite sorry for myself.

As I walked into the dining room, I saw a laundry basket FULL and OVERFLOWING with neat rows of folded laundry. I love the orderliness of perfectly folded stacks of laundry. If they are all sorted by person or room…..even better. (Those are little boy underwear and not Jon’s, just in case y’all were wondering!)

Jeremy had come home from school that day because he said he was not feeling well. He really wasn’t acting or looking too terribly sick, but he did look so cuddly and sweet all snuggled into the couch with his jammies on. I sure love that sweet boy of mine.

I looked outside my window and the sky was so blue….this picture doesn’t even represent just how glorious the sky looked that day.

As I stood out on my deck to take the picture of the sky, I looked down onto the patio and saw my poor neglected hanging basket. In the chaos of this summer…..well……well, it mostly died. So we had taken it down from the front door area and moved it to the patio before we threw it away. With the rain we had recently had, some of the flowers that were apparently only MOSTLY dead had managed to come back to life. I loved that in the one plant, there were the 3 stages of life. There was the young new growth, the blooming flower and the dried out dead pieces.

We have the most amazing backyard. It’s HUGE and the kids LOVE to play back there. As much as I’d love to be in our own house and not in a townhouse….there are some amazing advantages to living here right now; and this is one of those many advantages.

After I took all these pictures, the kids came home from school and we had a great afternoon and evening. I need to remember, more often, to STOP and to LOOK for the things around me that bring me joy instead of focusing on all the crap in my life. Seeing all the things that I have right around me that are beautiful and wonderful and focusing on the happy things, really makes a HUGE difference.

Laying Aside The Pride…….

This is a difficult post for me to write.

I need help.

I hate asking for help. I hate needing help. I’ve taken great pride in being able to take care of my family on my own and now……..now I am coming humbly and asking for help.

Up until now, I’ve been trying to “do” everything and honestly, we are not doing well. I am not doing well. I feel completely overwhelmed and like I am at my breaking point. I, personally, have had one too many melt downs just recently and I need to be a bit stronger to deal with the demands on my time and energy for the long haul. I’d like to say that were it not for all this cancer crap, that I’d be doing okay but…..we are dealing with cancer and 5 kids and all the craziness and chaos that surrounds us.

I’ll do a more detailed update on how we (individually) are all doing soon, but honestly, it’s not pretty. It’s pretty rough over here and we have a long road ahead of us.

There are about 32 weeks of Intensive Chemotherapy Treatment left for Angelica before she starts the maintenance stage. This (the maintenance stage) is when our Doctor has talked about things getting back to more of a normal stage of life. Until then, not counting any time for delays, we are looking at more than 6 months of treatment. That’s a long time!

Right now, we feel like we are barely hanging on and while we’ve had offers of help in the past, we just didn’t know what to do with the help. And…..I thought I’d be able to deal with everything.

And so, to anyone who has offered or is interested, I’m asking for help!

There are so many ways that someone could help. It doesn’t have to be a huge commitment. It could be a one time commitment, or weekly or even monthly. It could be 15 minutes or longer and there are many different ways that you could help. From cleaning, to meals, to helping with the kids, to sending a card or e-mail – anything that helps to lift some of the burden from us would be amazing.

The strain of dealing with the Chemotherapy Treatment is SO MUCH GREATER than just some physical discomfort for Angelica. Walking your child through the Treatment is a full time job. There are the physical issues that come as a result of the treatment like nausea, vomiting, mouth sores, weight loss, lack of appetite, muscle loss due to inactivity as a result of the physical devastation of the chemo drugs, insomnia, fatigue and pain. There is the mental anguish and fear from everything going on and not understanding 100%, to the fear of the unknown and the future. There is the schedule of treatment. It’s a brutal wicked schedule and the treatment center is an hour away from us, more if there is traffic. It is a huge thing to deal with.

Add in 4 other children each with their own specific needs and add on top of that the fear and confusion of having a sister dealing with cancer and a mom and dad who are distracted and overwhelmed and not available in the way that they have been.

Add in 2 jobs, neither of which are being done well. Add in the extra house work and meals and school work, oh and the stress of not having any time to invest in each other or the kids, individually, throw in finances and you have an unbelievable recipe for disaster. This is not even the whole picture……

I’m not trying to whine and complain. Realistically, this is just where we are at.

We are so grateful and thankful for every thing, big and small that we’ve been blessed with. We have been so SO blessed by so many.

If you have offered to help or are interested in helping, we are at the place where we are willing to accept it and we hope that we have an easy way to explain what we need.

We are not expecting anything and right now, we have nothing more than our gratefulness and thankfulness to offer in return.

But…….if you are interested in helping, please click here and see the sheet that we’ve created with some of the details.

Highlighting the Highlights

So I turned 35 a few days ago and while it wasn’t the best birthday that I’ve had, I suppose that it could have been worse. As it turns out……it is what it is and there is nothing that I can do to change or to alter it and so here are the highlights of it all….

This is a picture of me bright and early on my 35th birthday. This is the “raw” me. No make up, no hair (ha) and wearing a pretty bland, white tank and jeans.

As much as this is not my FAVORITE picture of me….I suppose that it could be a lot worse and I’m not entirely disappointed in how 35 looks on me. Eh?

Here is the Birthday Banana that the girls made for me. Very creative if you ask me……

Then there was the crazy, no good, horrible, terrible day that happened. In the evening, my momma came over and took the kids and I down to Derby Reach. We picked up some sushi and ate at a picnic table as the evening turned to night. It was a break from the craziness of the day and a treat. Jon and I used to go for a weekly sushi date before Angelica was diagnosed and we haven’t gone since. Thank, Momma! I love you. You have and continue to be such a help and encouragement to me.

Momma took Siah for a sleepover on Saturday night and after we woke up on Sunday morning we went for breakfast at Ricky’s Restaurant. This is another favorite thing of mine to do. I love breakfast…..any time of the day. Eggs and Hashbrowns and bacon or sausage………MMMMMMmmmmm! Debbie, Denver and Jack joined us. In all the insanity of this whole crazy journey, it’s nice to do something ordinary.

The kids and I came home and spent the rest of Sunday as just a quiet at home day. I figured that if I was going to get all the kids down to bed on my own that I’d need to start early. We had a few too many leftover’s in the fridge and so rather than spending time cooking, I re-heated and everyone got to choose a little bit of this and a little bit of that. My mom came over just as things were warming and she stayed for dinner. I was able to get the dishes cleaned and the kids in jammies while she held Judah. So SO nice.

Just as I was shooshing the kids upstairs to read before I turned out their lights, my sister Debbie came rushing into my house carrying a cake stand…….with a cake. SURPRISE!

They sang happy birthday to me….

Even Judah joined in with a few squeeks and squawks…..

And we even managed to get Jon in on the action through Skype. (Geli was sleeping thanks to some meds.)

After my post mentioned emotional eating, I’ve made a few changes for myself, my health and my diet; and the cake Debbie brought over was sooooo appreciated.

Isn’t that amazing? It’s watermelon on the bottom two layers, and a layer of canteloupe and a layer of pineapple. With thin layers of strawberries and banana’s in between. The sauce is a soy yogurt blended with strawberries, and those are grapes for fancy candles…..

Debbie is amazing.

It was even more delicious than it looks and was a great way to end off the day after my 35th birthday.

What was even better, was that I managed to get all the kids asleep early and was in bed, myself, by 8:30pm. Sleep is an amazing thing.

So, it wasn’t all bad……more like difficult or tough or just not what I was expecting or had hoped for.

But, we carry on.

And Just Like That

Jon and Geli went into the hospital yesterday and I honestly believed that it would be a super quick in and out.

By super quick, I mean approximately 1 hour……that’s about how long it takes to have her blood drawn and then to get the results back. The 1 dose of IV Chemo takes about 10-15 mins and can be given while they are waiting on the results.

We had wondered about her needing a red blood transfusion because she was quite pale and very tired.

I wasn’t expecting that all her counts would be quite as low as they are. Her counts had seemed to be heading up but right now they are looooooooow. Which means no more school this week! Seriously, what’s up with that?

And so she scored herself 2 bags of red blood cells and a bag of platelets…….and the quick 1 hour appointment turned into and ALL DAY AFFAIR.

Judah says, “Hello!”

crappy photo quality from my Blackberry

My mom had come over just after they left and took Siah with her over to visit my sister. So, I had the day with just Judah and myself. I wish I weren’t quite so exhausted. I was left feeling like I HAD to clean while I had the opportunity and no one else was there and also like I just wanted to sit on the couch and do nothing…..the end result was that I did neither very well and ended up feeling guilty about it all. How’s that for wrecking your day…..

I coulda……

I could have done this or that or the other thing, and all I accomplished was eating junk food(this belongs in a whole ‘nuther post itself about emotional eating), 3 loads of laundry, disinfecting the floors, a blog post and dinner for the family.

So we will be fed and clothed an hopefully free(er) from germs, but not much more than that. I’m thankful that I managed to sanitize the bathrooms early this morning.

Depending on how her counts rise, starting the next stage may be stalled a week. We are hoping that her counts rebound this week and that things move forward as planned BUT….we just have to see how it goes and carry on from there.

Feeling Ordinary

I had titled this post “Just Being Normal” and I changed it. I don’t feel normal. None of this feels normal and to be completely honest, I’ve never ever really felt “normal” in my whole life. Growing up, my family was fun, exciting, LARGE, unique, weird……anything BUT normal. I don’t even really like the word, and as you’ll see further on down this post….we’re still not “normal”.

My sister’s invited me to go and spend Tuesday with them, shopping. They were thinking about going to the stores out in White Rock, specifically the Children’s Place and H&M. I really needed to pick up some pants for Jeremy and Josiah. Those two have out grown and worn out every pant that they own. And yet, I really wasn’t sure if I had the energy to go.

I feel very similar to how I felt after Nathaniel died and then when we kept losing the babies. I felt like I’d been blasted with a shock wave and it affected me mentally – I couldn’t think properly; it affected me physically – I was so tired and even thinking about doing anything beside just getting through the day, exhausted me; and it affected me emotionally – I had very little emotional energy to spare on anyone or anything and on good days, even just breathing was hard. Then we’d go through the mental, physical and emotional roller coaster of getting pregnant only to be pounded again with another shock blast when the babies died. Each time we were “struck”, I felt weaker and weaker and less able to handle myself and to deal with my children and those around me.

Somehow I managed to scrape the energy and courage to try again and again, (The desire to have a baby was greater than the fear of getting hurt again.) but I was only surviving at that point. When we got pregnant with Siah, I felt so tense and on edge for the entire 9 months because I was just waiting for the next shock wave to come and rip through me. It took about 4 months after he was born for me to feel like I could breathe again, and even then, I was still nervous and on edge hoping that there wouldn’t be another shock wave.

Gradually, as time went by, I felt stronger and stronger. I could physically handle doing more things. Mentally I had more energy available and was able to process life at a faster, more “normal” rate. Emotionally, I felt stronger too. I didn’t feel 100% but I definitely felt WAY better than before where I was only barely existing from one moment to the next, and only barely doing the absolute minimum required to get us through the days…..mind you just about anything was an improvement from that.

Right now……I feel so much like I did back then and I hate it. I do believe that based on previous experience, that I will not feel like this forever, but this….the way I feel right now is brutal. I do feel like I’ve been blasted with a huge HUGE shock wave. I hate feeling like I have NOTHING in reserve – mentally, physically or emotionally. I feel like I start my day with 3 tokens worth of mental, physical and emotional energy and by 10:30am those tokens are gone. Between things like disinfecting the bathrooms or the railings, handles or light switches, or dealing with squabbling children or emotional children or watching my baby barfing up her entire breakfast that we just spent 2.5 hours coaxing and nagging her into eating because we are worried about the 15lbs that shes lost in the last 2-3 weeks, or trying to put together a plan for dinner let alone attempt to come up with a weeks worth of meals and then to be able to come up with a shopping list AND then to go shopping. That’s not even mentioning trying to “connect” with my husband or my kids, individually. I am either running on a deficit or things just don’t get done.

So when my sister’s asked me to go out shopping with them….all I could think about was that I had no energy to even pack to go for a day of shopping, let alone trying to “shop”, and be able to nurse the baby and walk all over the place…..it just seemed like a HUGE amount of effort and I wasn’t really sure if the effort required would be worth what I might get out of it….

I’d get to spend some time with my sisters and their babies. I’d get to hopefully score some pants for the boys and possibly on sale. I’d get to be away from my house and the cleaning and the children. I’d get to get away from the “cancer” for a moment. I’d get to step away from everything and just be a person with a baby, shopping for sales with her sisters. I’d get to be “normal”…..sort of.

It’s hard to walk away from something that is a part of you and weighs you down like you are wearing a lead jacket.

To be completely honest, the biggest draw for me was being able to get away from the house, the cleaning, the cooking and the children for a few hours….that might sound horrible, but aside from going to 4 exercise classes, I’ve not been away from “all of this” since June 16th…and I felt like I needed the break even at the expense of the physical, mental and emotional energy that I’d spend.

It was a great time with my sisters. I managed to pick up some clothes for the boys and I got a bit of a break from everything.

It was a bit of a crazy day.

This was how it started…..

Yah, that’s my son in the middle screaming. He kept that up most of the way from Langley to Coquitlam and then to White Rock. There are funny story about that but for another time….

You’d never guess from this picture, but Zach spent a good part of the trip screaming his head off.

This was a brief moment of peace and quiet.

This little darling was the best behaved out of the three boys, but then, Jack’s also the oldest of the three boys, so what would you expect…

There were moments on the van ride that Judah was quiet…..Here is one of those moments…it only lasted about as long as it took to take this picture. He doesn’t like his car seat and really, he just LOVES to be held.

We hit the stores and while we got no pictures of us shopping for clothes for the kids, we did manage to snag a few pictures of us at the Indigo Bookstore.

I tried to get a picture of myself, and the bathroom mirror seemed as good a place as any. I put Judah in my Moby Wrap because it keeps him snuggled and close but give me some hands free.

As we were leaving the store there was a huge mirror and we were trying to get a picture of the 6 of us….

Someone offered to take a picture for us….

We continued on outside and we wanted to get a few more shots in case those ones didn’t turn out..

This is what happens when you try to take a group shot….by yourselves!

Hmmmm! Head cut off and crazy eyes….nice!

Aaaaaaargh! If only Jack were looking….

Zach figured it might help if he held his mommy’s face in the direction of the camera….

Apparently I needed a little help from Zach, too!

The boys were mesmerized by the toy that we were shaking to try and capture their attention.

At this point, Judah woke up and started screaming……..this is the last photo we took.

All in all, it was a good day. I imagined that the three of us sisters with shaved heads must have looked odd and we did have someone come up to us and ask if we were Buddhists. I thought that was pretty funny. My hope is that maybe if I stretch myself that I’ll be able to get my energy back sooner as opposed to later.

Regardless, I got a break and got some shopping out of the way. At least that’s a step in the right direction….

Silence Filled With Thankfulness

I’m sitting here in the silence of my home. The baby is squirming in his sleep and Angelica is sleeping on the couch across the room from me.

My sister, Michelle, took Xandra camping. My sister, Debbie, took Jeremy camping, and my parents took Siah camping. Yes, they are all camping together. It’s hard being here and not with them…but it is what it is and it’s not forever….again, this is just a season and we will go camping again, hopefully next year!

I should be doing laundry and cleaning the bathrooms and vacuuming the upstairs hall and bedrooms, and cleaning the boys room and tidying the kitchen, but I’m not…..I’m just sitting.

Sometimes, you just have to sit and breathe….and I need to do that right now.

Often when I do slow down long enough to think about all of this, I’m struck by how blessed we have been. I think of how much love we’ve been shown by so many. It’s truly awe inspiring.

I’m so thankful to everyone who has helped us and given to us in any measure. We are so grateful to everyone who has in someway shared this “load” with us. There are times that we feel crushed (but not destroyed) under the weight of all of this and when we shift our focus off of how difficult this all is, it’s easier to see that there are so many standing around with us carrying a piece of this or even propping us up. Every meal, every gift card, every package, every gift, every comment, every prayer, every e-mail or Facebook message, every donation, every little thing no matter how big or how small, has truly impacted us.

You are all so kind, thoughtful and generous. Your love comes from near and far and wraps around us and helps to carry us through….and in the silence of today…..I think about you all and I’m so thankful.

Exhaustion….

is having your 3 year old son come to bed at 1am only one short hour after you’ve gone to sleep and having him awake and thrashing around in bed when at 2am you hear your daughter barfing. Then to have your husband fully wake you with the knowledge that your daughter has a fever of 38.1F.

Any fever is treated as serious and severe and warrants an immediate trip to the ER at Children’s Hospital.

The magic number that earns you an immediate trip to the hospital is 38.5F and so we called in to the oncologist on call to see what they’d like us to do…seeing as she wasn’t far off. Just so you know, her normal temp hovers between 36.4 and 36.9. We have to take her temperature daily in the morning and in the evening because when your counts are low, you don’t typically present with normal symptoms of infection…you just get a fever!

So when we talked with the oncologist on call, they said to wait half an hour and take her temp again to see where it was going….At this point I was up and Jon was up, Geli was up and Siah was up….Geli was finishing packing her bag as we were certain that she was heading in for a 2+ week stint of an antibiotics run. When there is a bacterial infection that runs rampant, she gets put on general IV antibiotics for a few days while they culture for the exact strain of bacteria and once they figure that out, they give her the correct antibiotics and then they take her blood every day looking for a test to come back negative for the bacteria. Once they get the negative test, then it’s two weeks on the antibiotics and then she can come home……lovely, eh?

This is what we were preparing ourselves for at 2am on a Wednesday morning. Jon was getting a last minute snuggle in with Siah. Geli had a bag packed and was laying on the couch and I was frantically cleaning the kitchen…..all the while trying to figure out how I was going to “do” everything especially when there was no way that Siah was going to sleep anytime soon, and honestly neither was I. Although I could go and lay down, I seriously doubted that I’d be able to sleep until I heard an update from Jon.

Finally, the half hour was up and her temp had gone from 38.1 to a 38.4 and so Jon rang to let them know they were on their way and that the temp was creeping up and they headed in.

I brought Siah back upstairs to my room and put on a movie for him on my laptop. He watched Enchanted, while I lay there waiting for an update. In the early morning hours time seems to stand still, but Jon finally messaged me and really had no update other than they were there.

He kept messaging me with what little information that he had and the end result was that things looked kind sketchy because she had a fever while already being on antibiotics and who knows what that meant and yet her counts weren’t indicating a bacterial infection and they weren’t admitting her, but they wanted her to say until the Oncology Clinic could assess her and it didn’t open until 8am so they were gonna try to rest and hang around until then. Siah’s movie finished after 5am sometime and I convinced him to fall sleep.

I finally fell lightly asleep around 6ish and then Judah woke at 7:30am to eat. Siah woke up for good just after 8am and I’d not heard anything regarding Geli yet.

Jon finally messaged me that they were giving her a IV dose of a big antibiotic and sending her home thinking she was dealing with something viral and that she could recover just as well at home as at the hospital…. She does have to come in tomorrow morning for some follow up blood work and another dose of antibiotics.

It was nice to have them come home. We have no idea where she could have picked this virus up, but this does speak to her compromised immune system. We feel fine, but somewhere, somehow she’s picked up something. Fortunately, her counts are just on the high-ish side of low, enough so, that she can be at home. Were her counts lower, that would not be an option.

But, this is one of the reasons why we must be so careful right now….Her system is just so fragile.

She’s been sleeping on the couch since 10:30-ish about half an hour after they got home. Jon took Siah upstairs and convinced him to fall asleep with much wailing and tears, but in spite of his exhaustion….Jon couldn’t sleep. Sucks!

I’m surprised that it’s already 2pm….I’m hoping that the rest of the day flies by until the moment I can crawl into my bed and that there are no more hiccups and especially that Geli starts to feel better so SO soon!

Bald Is……..

It’s been about 3 weeks since we had our big head shaving party.

I’ve shaved my head 2 more times since then. I will most likely continue to shave my head until Geli’s hair grows back. This will probably be sometime in the new year. I will be completely honest and say that I’m not looking forward to going through the winter bald…..it’s gonna be some mighty bit cold….we’re probably gonna be running our heater a bit more than normal and I guess that as stupid as I feel I look in hats – I’m gonna be getting some.

I really didn’t think too much about shaving my head when we did it. I knew that the possibility was that Geli would be losing her hair at some point but I hadn’t given much more thought to it all except that I knew that when it happened, that I’d shave my head too.

I watched her hair slowly start to fall out hair by hair and then it started to come out in hand fulls. Every morning it seemed there was a bigger handful and her pony tails got thinner and thinner.

I don’t know exactly what she was thinking as she experienced her hair falling out, all I know is that I desperately wanted her to not feel weird or uncomfortable or goofy looking or odd or different or any of the other thoughts that might run through a teenage girls head regarding her hair or lack thereof. I am her mother and I think that Angelica is beautiful. I see the beauty in her face, in the sweet almond shape of her almost black colored eyes, and the high curve of her cheekbones. Her dimples are amazing and her smile is so sweet with such beautifully colored lips. She is beautiful.

But…..her beauty goes so much further than that….she has a beautiful nature and spirit. She is lovely both on the inside and out.

Now even though we’d had conversations in the past about not being defined by how you look, but by who you are……talking about that and living it are two totally different things.

Here we are at a time in Geli’s life when looks could becoming more important. She’s heading into her teenage years and so often kids just want to fit in. There are so few who truly want to stand out and be “different”. Fortunately for us, Geli’s always kind of walked to the beat of her own drum….but this is taking it all to a whole new level.

You can’t hide bald. Well, you can get a wig…..which Geli has, and I’m just trying to get a good picture of her wearing it. (It’s been day after day of us being too busy, or her not feeling well or the weather being too hot……..do you have any idea how hot it is to wear a wig??? They even sell these little gel bands that you can wear under wigs to keep your head cooler on hotter days! Crazy!) But even with the wig on……you can’t just “do it” like you did your own hair. Especially if you wore your hair up in tight little ponytails mostly every day.

But, your other options are to wear a hat, or a scarf or…..to just wear your baldness out there…

I’ve chosen to just be bald. I want this whole “bald thing” to be as normal as it can possibly be. Or maybe I want the baldness to be a non factor or as much of a non-factor as it can possibly be.

Geli is completely comfortable in her scarves….she’s been wearing them forever and it feels “normal” for her to wear them. She’s also gone just bald too and has worn her wig as well. I’m hoping that the whole “hair” thing will just become a non-factor for our family. I can see us wearing hats, scarves, wigs, flower headbands, and…nothing and choosing to do it depending on our mood or our outfit….more like accessorizing, if you will.

I wore a blue wig out to the mall the other day.

It’s so interesting to be bald. You get so many looks but very few people just ask why? I feel so much more “normal” bald, and to put the blue wig on…I felt so conspicuous….which believe me….blue wig or bald….when you’re 5 foot 10 inches tall….either stands out in a fairly big way.

I can’t help but think about it as I go about our small community. I stand out. I’m not even trying to cover it up. I do wonder if people see beyond the bald head. Do they see me, the person? I know that even at my exercise class there are people who have not recognized me yet? They have not been able to see beyond the baldness. I wonder to whom I’ve done the same thing. What have I not been able to see beyond? All of this really makes you think.

But….if I can even if just in a small measure make this a tiny bit more “acceptable” because believe me…this is not normal – then all is good.

Now, it’s not all bad being bald.

We’ve discovered that there are some amazing perks to being bald.

Things like……

I can shower anytime day or night and it is so easy because there is no hair to wash or dye or style? It’s just in and out and done! AWESOME!

When I get up in the morning to get ready! Dressed, make up and DONE! Literally 10 mins or less! so SO AWESOME!

There is no more worrying about messing my hair up when I pull a shirt or sweater over my head…..the first two weeks were so funny as I’d stretch the necks of my shirts out really big to avoid messing up my hair….and then I’d realize that I had no hair to mess up…

I don’t have to carry bobby pins or elastics or clips around with me any more.

There is no hair for the baby to puke in or grab. (Which is then even more fabulous because then I don’t have to take a shower to deal with the baby puke in the hair)

I’m not trying to get my hot, sticky, sweaty hair off my neck in the summer heat.

I’m considerably cooler this summer.

I can wash my face in the evening and there is no hair to hold or pin back and no worries about getting soap or water in it.

I can put moisturizer on my face without needing to pin my hair back or worrying about getting cream in my hair…in fact, I just rub my moisturizer right into my scalp and whatever little hair there is…..can always use a little extra moisturizer, eh?

I only need one towel after a shower. I don’t need the second one for my hair. Cuts down on laundry, eh?

I’m sure there are tons more Positives about being bald…..or even just interesting facts…..

Are you bald? Have you been bald? Do you have anything interesting to add to this post? Leave a comment if you can think of any other positive or interesting things about being bald….

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