Deep Thoughts – Page 11

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.

~*~

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.

~*~

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.

~*~

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.

~*~

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?

~*~

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.

~*~

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.

~*~

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…..

Community

I had the opportunity this morning to speak with an amazing group of ladies at a church here in Langley.

This church has supported us in so many incredible ways and I was so thankful for the opportunity to “give back” and to share some of our story and some of my story.

I had 15 minutes to share on community and our walk through life with others.

I used 3 key points that I shared from.

– Shame and Fear will trap us and keep us isolated and feeling alone.
– Vulnerability and Authenticity are the keys to building relationship and community
– Knowing your True Worth is the key to allowing yourself to be vulnerable in front of others.

I shared on how in the past, my insecurities (read that as Shame and Fear) kept me from wanting to be in relationship with other people. About 7 years ago, We went to this amazing church out in Abbotsford that challenged that belief that I had about myself. They challenged me to see myself the way that God sees me, to see that I am worth being accepted and loved and supported and encouraged. Slowly I started to believe that I was worth more than I was believing about myself. I wanted to live in relationship and community with people and to not be isolated.

In my own personal journey, I had taken many steps forward away from Shame and Fear and Isolation and then, last June, Angelica was diagnosed with Cancer. My world shrunk down and for a year I was in basically a forced isolation within my house. I realized that I didn’t like the isolation. Somewhere along my journey, I had gotten some emotional healing and grown to the point that I liked being in community and it took a forced isolation to really cement it home in my life that I WANT TO LIVE IN COMMUNITY AND RELATIONSHIP and not in isolation.

During the past year, I realized that I could not handle the pressure and stress of what we were going through alone and after fighting against shame and fear…..I reached outside of myself. I was vulnerable and I asked for help.

The response was incredible and overwhelming.

We received enough help that I felt like I could finally breathe again. It was overwhelming and quite literally a life saver.

Without starting to grasp a hold of the concept that I was worth being accepted and love and supported….if I hadn’t started to realize that I was worthy of all of those things….I would have never been able to ask for help. I would have never been able to open up and say that I was less than perfect. I would never have been able to admit that couldn’t handle it all on my own. But in being vulnerable and open about myself and our situation…..I received even more than I had asked for.

In our society today, we are so busy and there are so many opportunities to hide behind our insecurities and fears and as a result, be, or at the very least “feel” alone. I also believe that we as people are craving opportunities to connect and to live within community.

Being open, transparent, vulnerable allows others into our lives and in turn, we are then a part of their lives…..building community, building relationships. I’ve found that being open encourages others to also be open which sets the stage for deeper and more meaningful relationships. Vulnerability is not always easy, but it is SO WORTH IT!

You are worth being loved.
You are worth being accepted.
You are worth being supported.
You are worth being encouraged.
You have so much value and worth.

It was amazing to actually meet this group of ladies, to see them face to face and to be able to thank them for all their support and love.

I’m not sure, but I think I was within my 15 minute time frame……I hope! The Music Team sang a fabulous song when I was finished talking and the whole morning just came together so well.

I am SO thankful to be apart of this community. The Community of Walnut Grove, the Alex Hope elementary School and North Langley Community Church…..has supported and blessed us so much and cannot thank you enough.

I’m so grateful to be apart of this amazing community!

Another Blow

I’ve had a few days to process and …..we were not prepared for this.

As of October 31st, Jon has been laid off.

The church has not been doing well financially for a while and at this point cannot afford two pastors and so, we are now out of a job.

I felt okay for the first part of this week, and I think that was shock. As the week as progressed, it has slowly begun to sink in…..we have no job! No employment! No Income!

This past year has not been kind to us and we are not in a position financially to absorb any time without a paycheck!

I believe with all my heart that we will make it through this. By that I mean that we will all have each other and that we will love and that we will live and yet……..I have no idea what this means for us practically and realistically.

Will be have to sell our house? Without a job we can’t buy another one, but without a job, we can’t pay for this one either. I know that it sounds rather dramatic, but I’m feeling rather traumatized right now.

I feel like I’m floundering and I don’t know where to go or what to do…..I’m trying to figure out what we can sell and what we can live without and how I can make some money. Even if Jon were to start his business up again, there is no way that he can just instantly make enough to support us…..

I just want to run away.

I know that there is never good timing for this, but this….this is just really, really difficult. Especially after coming on top of this past year.

I’m so tired. I want to sleep and yet, when I lay down….I can’t. Too much to think about and yet I feel so helpless…so hopeless. It’s been a hard day….a tough week…..

A Starting Point….some thoughts on ADHD

We left our house at 8:30am yesterday morning and arrived at the hospital at 10:30am.

Yup, it took 2 hours to get into town and there was no accident that we heard of or could find on any of the radio stations or Twitter (I love @news1130radio).

We called into the Clinic just after 9am to let them know that we hadn’t even reached the Bridge yet. I was thinking that we might be approx. 10 minutes late – not HALF AN HOUR!

Unfortunately, this cut into our appointment time and while the Dr that we met with was super nice and did take some extra time, our appointment was a bit rushed and we didn’t get the full time allotted to us.

We are still processing all the information that we received in our appointment but for the most part it was good.

This psychologist once again confirmed, after a short conversation with Jeremy, that he is NOT Autistic. Not that we were harboring hopes that he is, but she just let us know that there is no way. He is just too interested in being a part of the world around him.

We talked briefly through his history and through his meds that he’s currently on and then because of the lack of time, she cut to the chase…..

She wants to try Jeremy on two different medicines than the current cocktail that he’s been on. After listening to us talk about some of the things that Jeremy struggles with as an individual and that our family struggles with as a whole, she doesn’t believe that his meds have been helping him hardly at all.

According to her and to the Psychologist who assessed him for Autism, it should be a night and day difference.

The problem that we’ve been having is with what our interpretation of what Night and Day difference means.

See, if Jeremy struggles with Impulsivity, Hyperactivity, Inattentiveness, has problems reading & recognizing social cues, and organization along with a host of other things…..once he gets on the correct balance of meds…..those things should mostly disappear and he should appear and act as a fairly typical child.

I didn’t even know that was possible!

For the past 4 years, we’ve been giving Jeremy medicine to “help” with the ADHD and if all of those problems were rated out of scale of 1-10 with 1 being non-existant and 10 being the worst….without meds, Jeremy probably rates a solid 8 or 9 out of 10. On meds, we might be hitting a 4 out of 10. A normal boy might fall in the 1-2 out of 10 range.

If you knew/know what it’s like to live with an un-medicated Jeremy, and then to see him with the meds in his system….the 4 out of 10 sounds and looks pretty amazing! COMPARATIVELY speaking!

But then understand that for the past 10 years, we’ve been living with and loving on and working with a child who lives and breathes ENERGY! EVERY! WAKING! MOMENT! and quite honestly….because he has trouble sleeping….even the nights are scarey. When he was little and we lived in Abbotsford, he would wake up and roam the house and there was one night that he even opened the door to go outside. Now, fortunately we had an alarm system and so we caught him, but my point is that even during the night we had to be vigilant and we couldn’t let our guards down for even a minute.

That’s a whole lot of stress on a family….on a parent!

Living with a child who has special needs is not easy. We don’t go out very often. We don’t visit places or people very often and when we do, its with a great deal of stress on my part. There have been too many people in our past who have openly judged him and us for his behavior or lack of understanding of appropriate social expectations. ADHD is not something that most people just “understand” unless they know or have someone with ADHD in their lives or unless they’ve taken the time to understand. Too often it’s seen as a “bad child” or “bad parenting”. If people knew how hard we work with Jeremy and recognized how much effort we put in to this there might be less judgment or at the very least more understanding. One HUGELY DIFFICULT thing in all of this is that we put a HUGE amount of effort in and to see him “in action” you might not think that we’ve done anything. We may look like hugely lenient parents and we are anything but…..can you imagine where he would be if we didn’t work as hard as we do. It’s tough to feel like all your efforts don’t mean very much! To have a child with ADD/ADHD is really tough.

To explain……I don’t like to go places where Jeremy may do things that are inappropriate. That’s pretty much EVERYWHERE! I know that he’s going to act inappropriately in any number of situations or ways and I try, with everything in me, to “stay on top of him“, to be aware of where he is 100% of the time. I try to be aware of who’s time he is monopolizing, of what he’s saying, and what actions he is doing that others might find offensive…..because my reality has been that of judgement.

He looks like a normal child. He can talk (boy can he talk)! He can reason! He loves to share jokes and talk about his creative ideas….he just doesn’t know what’s acceptable and what’s not and he can’t even tell that you might not be interested. For example, He might try to tickle a small child and instead of doing it once or twice and seeing the baby smile and then stopping…..he might do it 10 or 15 times, until the parent is trying to protect their child from him….and even then…he might not clue in that the parent is uncomfortable, unless they actually say something like, “Please stop that. The Baby isn’t finding that funny any more and I would like you to stop.” Typically what happens in a situation like that, is that the parent laughs nervously, attempts to indicate in a subtle way that they don’t think the baby is enjoying the attention. Jeremy will the indicate that for sure they are because they are laughing. The parent will try again, subtly to get him to stop….by this point any normal person in Jeremy’s position would be embarrassed because the parent is obviously not happy but Jeremy is still going because he doesn’t catch the subtleties of the situation and finally the parent gets upset and rudely tells Jeremy to back off and then we either hear about the situation first hand OR what’s worse, is when we hear about how strange (or awful) our child is through another person that the parent talked with……

That’s just one example….but that has been our life….

So I go anywhere and everywhere, strung out and stressed out and wired as tight as a spring even before we go anywhere because it’s not about the possibility of Jeremy doing something inappropriate….that’s a given….it’s just how badly the situation will go and how understanding or judgmental the people on the other end will be.

According to the ADHD physcologist, Jeremy is ADHD (Attention Deficit Hyperactive Disorder) and is also dealing with ODD (Oppositional Defiant Disorder). When she said ODD, Jon and I were both taken back, but she explained that it’s not that’s he’s openly defiant in an aggressive, destructive manner. He does, however, question and challenge almost everything, and in that manner….he meets the criteria for the oppositional part of that diagnosis….

I don’t believe that all these letters (ADD/ADHD/ODD or any others) DEFINE Jeremy but that they give us a starting point to be able to talk with other professionals in a knowledgeable manner. It’s a starting point. It’s a common ground that we can meet together at to discuss how Jeremy can move forward in a successful way.

I will be honest and say that the meds stress me out some. If you know me….you know that I’d rather do things all naturally. Not that in my life right now that’s even a possibility (what with the CHEMOTHERAPY and all) but I don’t like to use chemical’s in my house. I don’t like to use chemical’s on our bodies and I certainly don’t like to put chemicals into our bodies…. I struggled with medicating Jeremy in the first place. It’s not really gotten any easier over the past 4 years.

The Dr has prescribed Jeremy two meds. One is called Vyvanse and the other is Risperidone.

The Risperidone is being used to help with anxiety, disruptive behavior and eating disorders. There is a huge amount of anxiety that comes with not knowing what to expect from certain situations or people, and from not being able to focus your thoughts…especially when it’s expected of you. When your brain is jumping around from thought to thought to thought and your behavior is off because you keep jumping from activity to activity…well that disruptive behavior also can bring stress with it. One other problem is that often a stimulant has a negative effect on your appetite. As a result, Jeremy has been hovering around 60 pounds for the last 3-4 years. This past summer we took him off his ADD meds and as a result he gained about 5 pounds and at some points in the summer was actually solidly 65 pounds, but once we started back on the stimulants this fall…he lost 2-3 pounds. It sucks. One of the side effects of this drug is weight gain…and while some people might consider that a negative side effect….we believe that having a few extra pounds on his frame will help Jeremy to feel a bit better. To show you the difference….Our 1 year old is just over 30 pounds and our 4 year old is just at 50 pounds….Jeremy is 10 years old and about 62 pounds…..he just doesn’t weigh enough to be healthy!

The Vyvanse is a stimulant. If you’re not familiar with ADD/ADHD, the front part of your brain is basically the “Conductor” that tells the rest of your brain what to do….it needs the chemical dopamine to be able to function well and properly. For people without ADD/ADHD, your bodies produce the correct amount of dopamine and the “Conductor” keeps everything organized and running smoothly and as a result, you can go about your day without feeling frantic or stressed and without “jumping from thought to thought to thought“. If you don’t have enough dopamine, then your “Conductor” doesn’t function very well and depending on how much or how little dopamine you produce, you may be more or less organized or hyper or able to focus your thoughts. Having a stimulant kicks the “Conductor” into gear (much like having a morning coffee, also a stimulant) and Jeremy is able to settle down and to be able to focus a lot more.

It was tough to walk into the Mental Health Building and I’m coming to grips with the fact that a child of mine is in need of Mental Health Services to be able to be a successful person. There is so much negative stigma attached to Mental Health Issues and while I’m not out to crusade for Mental Health…I am definitely out to crusade and champion for my son….but the two are tied together, aren’t they?

There are so many people out there that need help. It shouldn’t be embarrassing to need help. The goal is to be able to live an amazing life and to be able to function well in society and if you require some help to be able to do that…..then so be it.

This is not to say that it’s easy to be walking this road, but I want the best for Jeremy and I will do whatever it takes to help him to be successful. I believe that we are on the right path…..a tough path, but the right path for him.

The alternative……to allow him to needlessly struggle for the rest of his life and end up feeling stupid or dumb or insecure – NOT ACCEPTABLE! This is not something we can “discipline” out of him. Yes, structure is good and learning about choices and their consequences is imperative. Learning to grow and learn from our mistakes the best we can, is so important…..but it would be so UNLOVING of me to not help Jeremy in the way that he needs help. I wouldn’t discipline my child if they were diabetic in the hopes the they would start producing insulin and so neither will I neglect the fact that his brain requires a little extra help to be able to function well.

And so here we are…..I’m eager to see how this new round of meds will help….I’m hoping that this might be the key to unlock this child of mine from the confines of his own brain. Time will tell but I’m hopeful!

Added to say: I just want to recognize those people out there who do love Jeremy unconditionally and who champion him and accept him regardless of his challenges……I am so grateful and thankful to you for accepting and loving my boy almost as much as I do. We couldn’t have survived these last 10 years without you.

A Moment To Breathe….

Jon sent me to Starbucks to get away from the house and kids for an hour or so on Saturday morning and while I avoided writing anything for the first hour, I figured that I should at least try to work out some of the crap that is banging around inside of me……..

I’m sitting in Starbucks feeling like I should at the very least attempt to put my thoughts down onto paper.

I’ve been so all over the place recently and it’s frustrating me.

I want to be able to talk about how I’m feeling and why, but every time I think about what I want to say it all comes across whiney and needy and I hate that.

The church that Jon works for is going through a tough patch and he’s not gotten paid in the last month and while we’ve managed to scrape up some funds from small tech jobs here and there……it’s only just been barely enough to cover the bills AND he’s been crazy busy trying to juggle everything.

I have been SO FRIED from this past year and I was really REALLY hoping that I’d get the summer to be able to rest and recuperate and instead of having a slower paced life and more time with Jon….I’ve had more heaped on me and less time with him…..that part sounds like whining – I know…..but I love Jon…I love being with Jon….I love talking with him and working things out with him. We work so well together as a team…and this past year has stressed and strained us so much! We are okay! We are dealing with “ALL THIS”, but I miss him so badly and I desperately wish that we had some time with each other….but it’s not really happening right now.

And now….this whole post has gotten de-railed for me because I feel bad for whining about my problems and issues when there are people out there who would give anything to be in my shoes…..

I guess it shouldn’t be de-railed because I still have a ton of other issues in my life, and I’m not really sure who would want to trade for those…

I guess what I’m saying is that no one’s life is perfect and I’d give grace to someone else who was complaining about their life and the tough things that they were going through and so why shouldn’t I expect that others would treat me the same way?

I guess this all goes back to m not wanting to bother people….I struggle with that so much. I don’t want to talk about how tough my life is when I know that others are struggling with their lives and yet, why am I okay with them having issues and talking about it?

I dunno. Any thoughts?

Another thing that is weighing heavy on me is the whole Autism/Aspergers thing with Jeremy. I’m terrified of not getting a diagnosis and yet when going through this process – you must come face to face with all the negative aspects of this “syndrome” or “disorder” and well…..it’s pretty negative.

To have to list down on paper all the areas that your child struggles with, to have to admit that it’s pretty bad……to see what is considered “normal” or “neuro-typical” and to see that your child is not even anywhere close that that ideal……. When, over the past 10 years, you’ve come up with coping mechanisms and put measures into play to structure your lives so that you can pre-empt the negative aspects of this “disorder” but then to realize that it’s “not normal” to have to live like that…its tough!

What’s even harder is when your child is desperate to be around people and yet they don’t realize that their actions make people uncomfortable……..and aside from explaining to people (most of whom don’t care or understand or care to understand) that your son has……..has what???? He’s not been officially diagnosed and then I’m right back at the whole, “I’m terrified that he’s not going to get diagnosed and we’re going to have to do all of “THIS” by ourselves” and I know that at this exact moment I don’t have all the answers that we need to help him be the most successful person that he could become…….it just about destroys me!

On top of that, I’ve been noticing that Siah is displaying some of the symptoms of being on the Autistic Spectrum…..it’s difficult to get him to look you in the eye. He is very literal. He doesn’t do a lot of pretend play. He has melt downs when things aren’t exactly as he expects them to be (I’m not just talking about typical 3 year old behaviour)….He is less understanding of social situations than “normal” kids…..and although he doesn’t seem to struggle as badly as Jeremy does….he’s only 3! This means that he’s not in a lot of the same social situations that we see Jeremy struggling in.

We were supposed to get a call in July to book an appointment in August for Jeremy and I’ve not heard anything yet. So I did call in to our case worker on Friday, but…..she only works on Tuesdays and Wednesday’s and so I’ve got to wait until Tuesday before I hear back from her……GAH! I’m so sick of waiting.

I really wanted to get this dealt with BEFORE Jeremy went back to school so that he could get started on the right foot and not be struggling from behind……..I’m still hoping that we are still on track for an August Appointment for Jeremy.

Well, After all of that…..I’m outta time. I’ve got to head home back to the masses. I’m just gonna post this for tomorrow and hope that if it comes across poorly, that you’ll all just have grace for me…..well, cause if you don’t, I’ll just cry. I might just cry anyway!

GAH! I don’t really feel like I’ve worked anything out inside of myself and I hate that……

I do believe that I’ll be okay….that we’ll be okay but I’m tired! I’m tired of feeling like I’m fighting for everything……I just want a moment…..a moment where I’m not struggling or fighting. I just want a moment to breathe…..

As It Is……

I typed this earlier today and then didn’t have time to proof it….so it may be scrambly or not make sense in parts, but that is how things are going these days and if I try to take the time to work on this….then I may just give up and not post it….and so here it is….here I am…..there is where I’m at…just as it is….

These are some tough days that we are going through right now.

Angelica’s counts have been so low over the past week or so and it makes for some very stressful times. It feels very vulnerable and like she is unprotected. Because the “enemy” are unable to be seen with the naked eye…it makes this fight, that much more difficult. We don’t know where they are and so it makes protecting Angelica almost impossible.

Any open wound, no matter how large or tiny is an open source for infection and at this point, a tiny paper cut could send her into the hospital……

It’s not that the paper cut could send her into the hospital, but that the cut is an open wound and if she comes in contact with a bacteria and it gains entrance into her body…..she has no ability to fight off that infection.

The health that you or I take for granted……the cuts, and scrapes…the bacteria that we come into contact with and never think twice about,…..it all poses a very serious risk for her.

And right now especially, it’s tough….because she is supposed to be going to New York in 12 days. That’s less than a course of antibiotics (14 days) and throw in the 24-48 hours that it would take to culture the particular strain of bacteria or virus and you are looking at possible 16+ days in the hospital……none of this do we want on a good day…..much less when her trip is in 12 days.

Every time she mentions, not feeling well or that she has an upset tummy or a headache, or she feels hot or cold…..every time she coughs or feels like she might barf……we reach for the thermometer to take her temperature because when her counts are this low, a fever is often the only indicator that something might be brewing in her system.

I have been feeling so worn down as of late. I feel like I am reaching the absolute end of my rope. There are things that are just piling on top of everything else and making the end of this stage of the journey that much tougher.

I’m physically tired. I’ve mentioned this before but it’s true. I can keep putting one foot in front of the other because I HAVE TO, but that doesn’t mean that those feet don’t feel like they have been dipped into cement.

I’m emotionally tired. I’ve spent a good portion of this past week just on the edge of crying and every little “bump” has sent me over the edge and set off tears.

Probably the biggest frustration for me personally is the mental exhaustion……I am just not able to compute things right now. I am struggling with organizing and putting things together. This might sound so simple and ridiculous to you, but I walked around Superstore 3 times on Monday afternoon with my shopping list in my hand and yet……I just could not seem to make sense of my grocery shopping list. I had to double back to pick stuff up and in the end I had to get Jon to just walk me through the last bit of my list as I just couldn’t make sense of it……even then….we walked away from the store forgetting to pick things up.

I walk around my house forgetting what I was supposed to be doing and why…..

I’ve just gone too far and things that I used to be able to do on brain power alone, and then with lists and prompts and gadgets and reminders…….I find myself unable to do even with all the “help” and tricks that I’m trying.

And that inability to function at the top of my game it makes all of this that much tougher. I don’t’ even feel like I’m functioning “in the game” and that sets off those tears all over again.

I’m trying so very hard to be gentle on myself and yet, I expect so much because I am normally capable….but right now I’m not….and that’s hard for me to deal with.

We reach for the thermometer to take her temperature and inside I am freaking out….praying and hoping and wishing (and truthfully panicking) that the thermometer will read low numbers….that I wont see a number indicating a fever….

Just that stress alone is too much right now….

On Thursday her neutrophil count was not able to be counted (it was too low to be measured…lower than .02). Monday when we took her in for blood work, her counts came back at .1 and while this is much better than the previous count….it’s still WAY TOO LOW and she is still SO at risk.

She will get another set of bloodwork on Thursday and we are hoping that her numbers will be over .75 and she can start Maintenance…..

Did you know that exercise actually boosts your immune system? Like immediately there is a benefit……when oncology kids are getting their bloodwork done to be able to start chemo….they have to be at a certain level in order to start the next phase of chemo. If their levels are borderline low…they will actually have the kids walk around the hospital or walk up and down the stairs a few times and then run another set of bloodwork and it will be up and over the level needed…..amazing isn’t it? It’s huge incentive to exercise especially throughout the fall,winter and spring……just some thing to think about, eh?

We’ve been walking everyday. We are hoping to accomplish a few things with this. One, to boost Angelica’s immune system and to get that neutrophil level up. Two, to increase Angelica’s strength level. She’s spent a great deal of this past year on the couch and it’s time to rebuild up the strength and muscle that she lost. Three, we are getting a little bit of sun, which helps to get extra vitamin D into all of us. That “happy vitamin” is so necessary and good for all of us; plus it puts a little bit of color into Geli’s skin and again with the whole…”she’s spent most of the past year inside and on the couch” business…..between that and being chemo induced anemic…..she’s been looking pretty pasty. The color gives her a bit more of a healthy glow….which matches her new healthy position in life! Don’t worry, I’m a big fan of proper and safe sun exposure.

We are hoping, although we won’t know, that her counts will have come up above .5 (the level that she was allowed to safely go to school at) by tomorrow…..this would allow her to do a few more things like going shopping with us and running errands and things like that.

Once she starts Maintenance, then her counts will obviously be high enough and I will feel like I can breath and relax….

To be honest, I’m scared. I’m scared of feeling like I can relax. I’m scared of how I might feel were I to just relax…. I’ve been trying so hard to keep things all together and it feels a bit like a dam might explode and I don’t feel like I could handle that. I’m scared of the tidal wave of emotions that might be unleashed were I to just relax….

I just want to go and sit somewhere by the beach and let the wind blow ~~in my hair ummmmm, well~~ on my bald head, to feel the sand in my toes…..to just close my eyes, and smell the salt air and let the intensity of this past year just wash away from me with every wave that crashes.

I’m hoping that this summer will be a healing one….and that I’ll get a few chances to make it to the beach.

No Clue What We Were Up Against

Sometimes it’s easy to post and sometimes it’s really difficult.

I’ve been finding it quite difficult recently. There are things I want to say, thoughts that I want to share and yet when I go to unravel the mess inside my brain….it’s more difficult than I thought it would be.

Xandra just got back from 3 days away at Camp Jubilee as part of her Grade Seven Grad Trip.

She was so excited to go and while I was thrilled for her, there was a part of me that felt unsettled and uneasy.

She spent about 3 days before the trip packing and preparing and it reminded me so much of last year when we were doing the exact same thing for Geli.

The difference was that Angelica was not feeling one hundred percent.

Obviously, there is a good reason for that now, but back then, we didn’t know. We had no clue what we were up against. I was so pregnant and so looking forward to having Judah. Geli’s complaints of feeling tired were easily explained away by the fact that she was a teenager, and the rash that she had on her legs was probably from some reaction to soap or most likely a virus.

We sent her off to the Camp and when she got home…she was obviously quite ill. Sick enough (and I was pregnant enough) that a trip to the Dr. was very important. I am so thankful that we didn’t wait longer. I’m not one to take my kids to the Dr for every cough or sore throat and there is a good chance that were I not going to have a baby any day and the fact that if it might be Strep Throat….I didn’t want to deal with a highly contagious illness with a newborn in the house…..that we would have waited even longer to take her in. I don’t even let myself think about how much worse she would have/could have gotten had we not gone in to see our family Dr and gotten blood work.

We had no clue what we were up against.

Xandra made it off to the camping trip and I have spent the last few days alternating between worrying and telling myself not to worry. Xandra is well. Xandra is healthy. Xandra is amazing! Yes, this has been a tough year on her (as it’s been on all of us) but we are making our way through this….through the good times and the bad times. We will survive. We will overcome this.

She came home today and we drove to the school to pick her up. As we drove up to the front of the school, every muscle in my body was tense and I kept looking…searching for some sign that she might not be feeling well. I waited until she opened the van door, praying that I wouldn’t hear the scratchy voice of a cough or the nasal voice of a stuffed nose……and at the same time, I’d already prepped myself that she’d been in close contact with a whole bunch of other kids, who had ingested a ton of crap food with very little sleep…..an illness would not be out of the ordinary.

Her eyes looked bright and cheerful. Her skin was sun kissed and bight. She had a skip in her step and a song in her voice as she greeted us and the breath that I’d been holding so very tight let out…….a little.

It’s a hard thing to deal with; having your child be diagnosed with a life threatening illness and then trying to carry on with life. It s not an easy thing and too many times I’ve had nightmares of something horrible happening my other children. Too many times I’ve worried or stressed about things that have never come to pass.

So much of this journey is “too much”…..I know that I have a lot to “heal” from. There are times where I’ve felt traumatized by what has happened and yet I carry on. I must! But the effects of what we’ve been though have left their mark and I’m not yet in a position of strength.

I will be. Every day, I grow stronger and some days I feel like I’ve healed….and then something like these past few days happens and I see that I’m not quite there yet.

It will come. I believe. It must!

Part 2 – The Place I’m In

I mentioned in Part 1 that I spend a great deal of time inside my house. The biggest reason for this is to keep Angelica as safe as possible.

We cannot protect her from everything and even in this environment, no matter how hard we try, there are bugs and bacteria that we cannot eliminate. When her counts get low…..she is even a danger to herself…..any cut or bump can add to the possibility for a problem….

It’s not fun.

The weight of the stress alone, is almost too much to carry; let alone just dealing with the actual chemo and the side effects it brings and add in the emotional side of things and often it can seem overwhelming, but that’s not the point of this post….

Friday April 8 Langley, BC

Have you ever been hurt by another person?

I have.

For different reasons and at different times in my life, my feelings got hurt and it sucked. No one likes to get hurt, do they?

Well, here is some news that I’m sure is news to no one……..PAIN and SUFFERING happen. It’s as much a part of life as breathing and dying. It happens. It’s gonna happen! It’s just a part of life. No one gets a free pass. I’ve found that when I can accept that life has good AND bad moments, I can be more at peace with myself and in turn, when I am more at peace with myself – then I have more grace for others….

In this place that I’m in………I’m uncomfortable!

I’m literally living inside walls and there are aspects of this that feel so, so, SO claustrophobic!

You see, in response to the hurt I experienced, I built walls; and these walls……..they were supposed to keep me safe and protected.

I’m not really sure what I was thinking other than I just didn’t want to get hurt again. I guess that I figured that if my walls were big enough then I could keep hurtful people from doing hurtful things to me, and then… my life would be all sunshine and roses.

People who are hurting…..they end up hurting other people and the cycle rolls around and around and around! Think about it….when are you most likely to lash out at someone….after you’ve been hurt or offended?

HA!

It doesn’t really work like that. I still got hurt!

Eventually it got to the point where I avoided people. I don’t mean that I physically avoided ALL people, but that I didn’t really allow anyone to be close to me. I never allowed myself to be vulnerable to anyone. My understanding was that if I opened myself up to people, then I was opening myself up to a world of hurt.

And in time, I found myself alone!

The walls I had built to protect myself by keeping others out created an even bigger problem…..they allowed no one in.

I was alone; oh so very, VERY alone!

Eventually, I realized that this was a horrible way to live and after a fair amount of counseling, I began to let the walls down. I’m not saying that everything was 100% better and that I had no walls and was completely open and vulnerable to everyone, but I believe I was heading in the right direction. I was in process….. I was allowing people in to see me…to see the real me; to get to know me, the real me. Yes, I recognized that I might get hurt, but honestly, being alone hurts worse.

People are lonely because they build walls instead of bridges. Joseph F. Newton

This last year, I’ve experienced those walls in a very literal way. I’m inside these walls. We are trying to create a safe place for our daughter; and for a variety of reasons, I’ve spent most of the past year within some literal walls. It’s been a rough year. It’s been a stressful year. It’s been a very tiring year, but most of all it’s been a very lonely year!

It’s also in some ways been a very enlightening year. I have SO MUCH TIME TO THINK!

Me as a Baby

Sometimes, this is a bad thing and sometimes, it is a very good thing.

I don’t want to be separated from “life”. Yes, this is just one year. Yes, we have made choices for a reason, a good reason. Yes, it’s not forever but right now it’s a lonely time and it sucks. I understand all of the reasons and it still doesn’t make it any better or easier. And so, I’m looking forward to this “season” ending and a new season beginning.

In any case, this has really cemented in me the fact that I do not want to be alone…..I do not want to live confined within walls. I’d rather be vulnerable than alone!

(part 3 coming soon)

Part 1 – The Place I’m In

I have written, discarded and re-written about 6 different posts and I have no idea how to write about what I’m thinking about or where to even start.

Okay, lets try this out…

The chemotherapy that Angelica is going through kills cells. It specifically kills cancer cells, but indiscriminately, it kills a lot of other cells.

Our White cells are the infection fighting cells and more than a few times throughout these last 10 months, Angelica’s white cell count has been almost completely decimated. I compared the White Blood Cells, one time before, to an army. Imagine different units within that army. Unit #1 does the actual fighting of the different diseases and infections and viruses; while Unit #2 does all the recon work and Unit #3 has all the previous battle plans and strategies stored and ready for the next time they come up against a particular adversary. Obviously, this is an oversimplification, but you get the idea???

Playing Frisbee with Josiah

This particular virus that Angelica just had was a common virus that 75% of children under 3 years old have already been exposed to and had and 90-100% of children under 5 have already been exposed to and had…….

This means that Angelica, at 14 years old, was just dealing with a virus that she’s already dealt with previously. Those particular White Blood Cells that would have remembered and quickly destroyed the virus, were destroyed in a prior “Chemo” Attack and so she got sick. The only other one of our kids that got sick with this particular virus is Judah……so there is a good chance that Xani, Jeremy and even Josiah who is 3 years old, have already had this particular virus, especially seeing as it is, apparently, quite a contagious virus.

The threat of Angelica picking up different bacterial or viral infections is less than if she were a toddler or a young elementary school age child. Geli is not crawling on the floor or rolling around on the floor or picking up random bits and pieces off the floor and putting them in her mouth. She does not put a lot of objects that have been laying around into her mouth, and she is of the age where she can practice good hand washing techniques which drastically cut down on the amount of “bugs” that she might pick up. She can recognize and avoid, openly sick people and all of those different measures contribute to her being able to do things like going to school or to a movie. There is still a risk of her coming in contact with a certain virus or bacteria in going out in public, but she is not at as much risk as if she were younger.

But, we do have 2 little ones in our house, and they are the perfect age and quite susceptible to pick up on all the routine viruses that most all children get. Under normal circumstances, we wouldn’t give it a second thought and they would pick up and deal with all of these different viruses and bacteria and build up their own sweet immune system and because we older ones have already dealt with a bunch of them, we’d have two cranky little ones, but we’d be able to deal with it without too much trouble.

Run, Siah! Run!

Seeing as Geli’s immune system has been compromised AND any fevers mean a hospital stay until they figure out what is going on………we try our hardest to not place the little boys in a position where they might pick something up and bring it into our home to “share” with Angelica or anyone else for that matter.

This means no church, no play groups, no daycare or library time. There are no extra-curricular activities like swimming or gymnastics and we try to avoid the store during the busy times and often leave the boys at home, if it’s possible.

This has made for a very long and lonely year for me. I spend the majority of my time, in my house. We spend a large portion of time trying to create a safe place in our house. It’s not the easiest thing and I find that I feel like I’ve stepped out of the “world” and my life has stopped while the rest of your lives have carried on.

It’s a bizarre place to be in….

(to be continued….)

All About Me

I left Josiah and Judah at home with Jon last Friday and took Angelica out shopping for a birthday present for one of her friends. We went into Michaels and then hit the mall.

It was so bizarre how lost I felt. It’s been over 8 months and I’ve done almost nothing for myself in all of this time. Geli was headed off to some area of the store and her counts are high enough that I didn’t feel like I needed to stress about her and so I just let her go while I browsed through random sections of the store.

I didn’t have anything that I HAD to pick up. I didn’t have anything that I NEEDED to pick up. I didn’t even have anything that I WANTED to pick up. I didn’t have a baby hanging off of me and I wasn’t freaking out that a 3 year old was touching or climbing on or possibly breaking something. I actually texted Jon that I missed him and the boys and that I wished they were with me. I felt so SO lost. I had no idea what to do with myself and it was horrifying, and yet really made me think….

These past 8 months have been tough and there have been times when I honestly wasn’t certain what state I be in, mentally and emotionally, when things started to settle down. I knew that we’d get through it. I didn’t have a choice. We would come through and then what…….

Now we are looking forward to June (when the intensive part of Geli’s treament comes to an end) and we can see that there might be an end to this crazy, CRAZY time. We are not there yet, but as I’ve said before….each passing day brings us one step closer to the end.

Things are not easy and I still feel a bit like I’m hobbling along BUT……I’m starting to think about the future. I’m starting to plan and hope and wish. I’m feeling like I need to start making plans for transitioning from this “high stress time” where I’m just trying to “exist”, to living a more purposeful, planned out life.

Just recently, I’ve attempted to meal plan, again. This was a HUGELY effective tool when I used it before Geli got sick and it saves us SO MUCH TIME and alleviates the whole “What’s for dinner? stress”. I’ve also tried to schedule in Monday’s as a Grocery shopping day, but if things continue to settle down enough that Jon and I get our Monday “day off” then I might bump that to Tuesday to work around “our day”. Planning “one” shopping day has also helped to alleviate some of the stress from continually running out to the store although it TOTALLY threw the kids for a loop that we refused to just go out and get something that they thought they “needed”. They seemed to figure it out fairly quickly though.

I’ve been trying this for a couple of weeks now and on the weeks that I’ve actually made it happen…it works perfectly. When things get stressful and we go into “survival mode” it doesn’t seem to work as well. Even right now, I’m thinking that I should plan a couple of freezer meals which would totally help out when things get stressful…..hmmmm….have to give that a bit more thought.

Another area that I’ve very recently started “working on” is me…..more specifically my health. At this exact moment, I’m tackling my weight. I was 194 pounds before I got pregnant. Not as Light as I’d like to be, but on a 5 foot 10 inch frame….it doesn’t show the same as it might on someone not as tall.

After having Judah, and all the Cancer stress and the month long hospitalization I was actually down to 185 pounds. Over the last 6 months, I’ve hovered around 190-195 pounds and just recently, I managed to hit the 200 pound mark and that’s it! I’ve got to do something. I had planned to just try to get through this first year without worrying too much about my weight, but that was when I was still under 200 pounds…..that whole 200 pound line….that’s my line. And I hit it and sooooo I’m choosing to work on it. I think that “technically” the books/experts/whoever “they” are say that I should be around 170 pounds, but I am really quite happy being 180-185. I haven’t been 170 since before I got married at 19 years old….. And so I’ve chosen to do something…..I’m counting calories and walking. I’d love to hit this hard and be all anal and perfect about it, but I honestly don’t have the energy to do this as intensively as I’d like to and I’m working on being okay with that for right now.

I’m down 5 pounds already and so I carry on. I’m hoping that this summer I will be in better shape than I have been for the rest of this year.

I’ve got a long way to go as far as “working on me’ goes, but I’m trying to take baby steps. I don’t want to get to June and have things slow down and for me to be still functioning in this “survival” mode. Knowing that things should be easing up, I want to be preparing myself so that the transition is not another shock to my system. I’ve had enough shocks for now, eh?