Let’s Talk About Mental Health Issues……

I’m frustrated with the whole concept of guilt and Mental Health.

I, in no way, have all the answers; and on most days I question whether I have any answers. What I do know is that I deal with anxiety and have for as long as I can remember. My mom says that I was fearless as a child and so, I’m not exactly sure what happened, because I don’t really have any concrete memories where I wasn’t dealing with anxiety.

At least 3 of my kids deal with some level of anxiety and Jeremy is also dealing with ADHD, Executive Function Disorder, Learning Disability and Autism. All of those fall under the “Mental Health” umbrella. They all have areas of “Brain Disfunction.” In my mind, that means there are areas where the brain is not functioning in a Neuro-typical way. I do understand that there are many who don’t want autism classified as a mental health disorder because it is usually thought of as being a genetically predetermined disorder, and there is a certain amount of “shame” associated with mental illness or mental disorders.

I choose to think differently about the whole concept of Mental Health.

I deal with any physical health issues for myself or my children in a completely non-guilty manner. If myself or one of the kids has a cold, or a broken bone or some other physical ailment, I don’t feel guilty taking them in to see our Family Dr or a specialist, if needed. Why then, if myself or one of the kids are dealing with Mental Health Issues, should it be any different?

In my mind, it shouldn’t be any different at all.

If my car needs a tune up. I get it done. If my house needs a hose for the water tank, we get it done. If our clothes are in need of repair or replacement, then I take care of it. Why do we take care of our physical bodies and our belongings, but hesitate when it comes to mental and emotional issues.

We, often, hesitate to talk about it openly and freely. Sometimes we hesitate to even admit it to ourselves. It’s a tricky subject and not one that everyone understands or even cares to try to understand, but Mental Health and Mental Illness are not going anywhere.

I’m trying to raise my kids to understand that Mental Health is as important as Physical Health. It’s important to take care of your mental/emotional state; and it’s important to take care of your physical state.

If I needed insulin because my body never produced it, or it produced a very small amount……would that make me “less” in some way. Would it mean that I was broken and not as valuable or worthy as someone else who didn’t need insulin shots? So what if I need extra seratonin in my brain, for either a while or even forever……I don’t see how the two are different. What if genetically, I don’t produce as much as you do? Or what if I experienced some traumatic event in my life and the stress has negatively affected my body in such a way that I needed some help, in the form of seratonin or any other mental health drug…….why is that any different than needing insulin or any other drug.

I don’t see that it is.

In my family, there seems to be a huge history of anxiety and depression. I have also experienced a stillbirth, 4 pregnancy losses and cancer, as well as dealing with a child/children with special needs. So whether it’s genetically predispositioned or because of some life trauma…..I don’t know.

What I do know, is that being on medicine has helped “ME.” I’m not advocating that everyone needs to be on meds. Because if you can deal with your mental health issues through counselling and Cognitive Behaviour Therapy….then awesome….but by doing that, you are still “taking care of” your mental health.

For the first time in my life, that I can remember, I feel like the inside of me matches the outside of me. It’s crazy hard to explain, but I will try. I’ve had many people not believe or understand that I was anxious (as a teen or young adult) because I seemed so confident and in control. I think that must be where my kids get it from. They seem to hold themselves (mostly) together when they are at school or church or “out” and then when they get home, they feel comfortable enough to “fall apart”.

I don’t know that I did a lot of “falling apart” but I did use “control” as a method of dealing with how “out of control” I felt. I felt that I needed to control my situations, the people around me and myself in order to feel safe. It got to the point where my “control issues” were hurting my relationships. And yet, I didn’t understand “why” I felt the need to “control” everything. I just knew that I felt safer when I knew exactly what to expect.

I did believe that I was a good person and yet a part of me didn’t believe that. I believed I was a good friend and yet the insecurity and anxieties held me back from actually “being a good friend.” I thought I could do things like “sing” and yet I could never put myself fully “out there” because I couldn’t possibly be good enough and what if I made a mistake…..what would people think of me. I know that lots of people deal with a certain amount of insecurity and I don’t know that I can fully explain just how it felt inside of me. But imagine if you thought you were good enough but then you weren’t really sure if you could believe yourself…..and if you were so unsure then maybe you really weren’t good enough. Throw in some perfection issues which meant that you couldn’t or wouldn’t do ANYTHING you weren’t absolutely certain that you could do with 100% accuracy and confidence………and that pretty much left you not doing much at all. You wanted to do “stuff” but unless you could control the situation and knew exactly what to to expect and exactly what people’s reactions would be and exactly what the outcome would be……….which having all of that fall into place for any specific event, was pretty much an impossibility and if it did…..you came across so confident that no one would ever guess that you were dealing with insecurity and anxiety……and throw on top of that whole mess, that you never wanted to come across as anything less than confident and so you were exhausted all the time just trying to hold yourself together so that you could come across “PERFECTLY” because anything less than perfection was failure and “FAILURE” was never acceptable and basically you have a perfect recipe for disaster.

Knowing what I went through as a teenager/adult, and then when I finally figured out that I was dealing with “anxiety”, feeling so relieved and yet angry and grieved over all the lost time………I am strongly advocating for my children’s Mental Health when necessary.

I look back at my teenage years when I didn’t feel strong enough or worthy enough or acceptable enough to do things like, go to college or university. I figured that I was good at looking after kids and so rather than do things I was interested in, like music or teaching or even in the medical field….I took whatever jobs fell into my lap, got married and had kids. I was too scared to do anything else.

I love my husband. I love my kids. I’m not unhappy with my life, and yet…..I could have done things differently. I’ve shared this with people before and I usually hear something like, “We all feel insecure and regretful of the things we wish we had done but didn’t do.” This is different. I’m talking about life crippling anxiety. Like there where things I wanted to do and yet was SO scared to do them that even the thought of doing it stressed me out, and so I did what felt safe.

I’ve lived my entire life, up until now…..only doing things that felt safe……and that doesn’t seem like a huge list of things, especially compared to things that I have dreamed about doing over the years.

I’ve accomplished a fair amount in my 38 years but I’ve dreamed of accomplishing so much more. I’ve just discarded those dreams because I wasn’t good enough, or people would think I was stupid for wanting to do those things. I believed the lie that others could do it better than me and I shouldn’t even try in case I failed. Because failing is one of the worst things ever. I believed that. I’ve believed that for so many years and I hate it.

This is why I’m a HUGE advocate for my kids and their mental health. I’ve pushed my kids beyond every “limitation” that I’ve had that has held me back. I’ve explained why I’m pushing them into uncomfortable situations. I’ve had them ask for things from adults/teachers/doctors/etc. when they felt uncomfortable doing so. Discomfort isn’t a bad thing. Failing isn’t a bad thing. It just means that you tried and for whatever reason it didn’t work out, this time……..and that’s ok.

Never try, never win
never get a break
You miss a hundred percent of the
shots you never take

Hedley came out with this song and it’s been HUGE for me……

I’m a lot more open now. I say “yes”, when everything in me wants to say “no”, because “NO” is safe. I don’t mean that I say yes to everything. I’m still in recovery mode from the 2.5 years of cancer treatment and the havoc that wreaked on me. But, I will honestly assess my stress level, versus just saying “NO” because I’m scared. I ask myself if I’m allowing anxiety to hold me back from saying yes to something that I might actually want to do and even be good at. I try to be honest with myself about what I can do and what I can’t do, and to not view everything through the lenses of anxiety. I will even tell others that any hesitation they might sense from me is anxiety and I’m not willing to allow it to control or rule my life any longer.

Does this mean that all my days are good, confident days…..NOPE! Not at all. And when I’m having a particularly bad day – as far as anxiety goes – I am gentle with myself and honest with both myself and others as to how I am doing. Because I know that tomorrow is a new day and most likely I won’t feel the same. I have stronger days and weaker days, but now I know that I am “fighting” anxiety and that it’s not me……I’m not bad.

I am enough. I am good enough. I am strong enough. I am confident enough. I am enough.

I want my kids to believe that they are good enough and can do whatever they want. I want them to “go for” the things they want and so I advocate for them and I encourage them to advocate on their own behalf. We talk about strategies for dealing with “issues” and “insecurities” and “anxieties”. We use medication as an aid, if necessary, and we do it all without guilt. There is no guilt or shame in needing help…….whether its physical, mental, emotional or spiritual.

I am enough!
They are enough!
You are enough!

Details

Hello Friends,

We are in the final countdown of the last days of Angelica’s Treatment.

It’s so exciting….not counting today, it’s 5 days left. YAHOO!

Some of you may have heard and I’m so sorry if you have not, but we are celebrating on Sunday September 30th from 2-4pm at the cafeteria at Walnut Grove Secondary School.

You can let us know if you need directions, but we’d love to have you join us as we celebrate the very last day of Geli’s Treatment and the first day of the rest of her life…..

What an amazing day. We are so looking forward to it.

We had a HUGE day at the hospital yesterday and I’m still recovering from it all. We left our house at 9am and didn’t walk back in the door until 5:30pm. It was all good news and we are so looking forward to wrapping this phase of our life up and starting to move forward in a life without daily chemo. We are looking forward to building strength and regaining that which was lost…..to just moving forward instead of feeling stuck.

We’d love to have you join us.

We’ll have coffee and cake available so if you can, stop by, we’d love to see all of you who have supported us and helped to carry us through these past 2.5 years…..it’s been quite the journey and we are so thankful that you’ve been there along the way helping us to keep moving forward.

Let me know if you need more details…..look forward to seeing you.

24

So, it’s been a while since I’ve done an update on where Geli is at.

It’s been a GREAT summer and we are having a great kick off to the fall, too.

Angelica is officially finished cancer treatment as of September 30th. She wakes up on Sunday morning takes her last dose and BAM!!!!!! just like that…..no more chemo.

She still does have one more hospital visit that we fit in on Monday September the 24th. It should be a super quick “in and out” of the Oncology Dept, BUT…….she is supposed to see the physiotherapist BEFORE her 11:30am chemo appt and then she has an appt with the Orthopedic Surgeon just to assess where she’s at….which we are thinking is in a much better place than she’s been in over a year…….YAH!

This summer was great. Geli has gotten stronger and stronger. She was walking (not for very long) with quite a wobble in her gait and now there is almost no wobble. She still needs to work on some stiffness and shortness in some of her muscles but it is exciting to see HOW FAR SHE’S COME!

She was able to swim and swim and swim and swim, while we were up at the Lake and even went knee boarding a number of times with minimal muscular soreness the next day. She is walking around our community to visit friends, shop or buy junk food at the local convenience store. It is SO nice to see her “just being normal”.

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Last school year, there was quite a bit of talk about enrolling her to home school for Grade 10 as she was in so much pain and we were not sure where she was going to be at this year – physically, mentally and emotionally. We even signed her up at the same school that the two boys are at, but then she decided to stay at her local school and it’s been a great couple of days for her. People have been so complimentary regarding how she looks physically and there have even been a number of double takes as people recognize her and almost always there is a comment about how AMAZING she looks or how long her hair is….and honestly….she looks amazing.

At our next appointment, they will send off the request to have her VAD (the port that goes into her heart that she gets the chemo into) removed and then……and then….

Well, Angelica will still be going in monthly for check ups for the next year. Then it will space out to 3 months, and 6 months and then once a year. She will stay on the prophylactic antibiotic for the next three months and basically as of January….Angelica will be medicine free and after she gets the VAD out, if she gets a fever……I can just treat her like a normal kid and give her some Tylenol and send her to bed with some chicken noodle soup – as opposed to stressing and heading into the hospital.

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We have been throwing around the idea of having a get together, maybe at a local park or something, to celebrate the end of this season and the beginning of the rest of her life……

We will keep you posted if and when……and we’d love to have everyone who has prayed and supported us over this time join us, if we manage to pull something together.

Thanks again for all your support. We appreciate you more than you could ever imagine……

The Countdown is On…

This past Monday we were in at BC Children’s for another monthly chemo appointment. As of today, Angelica has 4 more monthly chemo appointments left until she is finished taking chemo and only 1 of those appointments will have a sedation procedure. This is SO exciting.

There is not that much that is new or interesting about the actual chemo appointment itself! Angelica goes in. They admit her and draw her blood. They give her the chemotherapy and then we see a Dr. and go home. At this point, as long as I don’t think too closely about the poison that they are giving her, it’s all very routine. I know that it’s a necessary evil and I’m so thankful that we are here and can get the medical help, but it’s still tough…..and that’s never changed from the day that she was diagnosed until now….

What’s been different about the last few appointments has been the issues regarding the bones. The news of Avascular Necrosis/Osteonecrosis has been tough. Dealing with how much constant pain Geli was in was so hard. She had a hard time walking, moving, dressing, doing her hair, bathing……Life was pretty tough and every report we were getting was pretty much preparing us that life would pretty much be like this and possible worse…..

Things started to change after our appointment with Dr. Brown the Pediatric Surgeon at BC Children’s. He gave us news that we received as god news….as positive news and in the middle of all the crap…it’s what we needed to hear.

Angelica is doing so much better. It’s not all butterflies and roses, but she is in less pain. She’s tired and her muscles are sore, but she is working SO HARD!

Geli is doing about an hour and half of physio a day…….on her own…..or mostly on her own…

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It’s pretty incredible. She is doing exercises 3 times a day – morning, after school and before bed. It’s making a HUGE difference. Instead of walking around like someone who is 90 years old, she is walking and standing more like a teenager. She is standing straighter and walking straighter. While there is still a bit of a wobble in her step, she looks AMAZING!

It’s exciting to see how far she’s come. Sometimes, it’s hard because she can’t see the change, but to us, looking at her and seeing what she can do now that she couldn’t do a month ago….the changes are astounding. For example, she couldn’t stand up in the kitchen to help with dinner or dishes for 15 minutes without being in pain and so tired. Now, she can do at least an hour. On Monday, she had the sedation procedure with the chemo into her spinal fluid (a Lumbar Puncture) and there has not been one day in the past 2 years that she has done anything other than lay around on an LP day. On Monday, she wanted to walk up to the store a few blocks away from our house to get something that she really wanted for dinner. It blew me away. So SO much different than a month ago……she also has SO MUCH MORE range of motion in her shoulder and elbow and it’s making a difference in the daily living things that she is able to do, like reaching for things up on shelves in the kitchen and doing her own hair.

She still requires help, but all of this change…..it’s only after ONE MONTH of exercise…..The physiotherapist at the hospital said she was doing incredible and our nurse COULD NOT BELIEVE how amazing she looked even all groggy after having the LP. She looked healthy and happy….in fact, more than a few nurses mentioned how great she looked.

It’s so great to see positive change and forward movement in this situation. We have our next appointment with the Orthopedic Surgeon on Tuesday June 14th….I’m looking forward to Geli going in and being in better shape than she was the last time.

One other AMAZING bit of news, is that the Physiotherapist at BC Children’s suggested that Angelica go THERAPEUTIC RIDING…..as in HORSE RIDING. Any of you who know Geli, know that she has been in love with horses for as long as we can remember. I have lost count of the number of horse calenders, horse bedding and other horse paraphernalia that Angelica has collected or wanted to collect over the years. To say that she was a horse fanatic is putting it mildly. Unfortunately, horseback riding has not been something that we’ve been able to do, but it has been something that Geli has wanted to do forever.

To have the Physio suggest that as another form of physio that Geli could go riding…..well, it’s pretty huge. Just talk to Geli about it and see the smile on her face when she talks about it….she has this amazing smile that just lights up her WHOLE ENTIRE FACE. She is SO excited! We’ve contacted the stable that does Therapeutic riding out here in Langley and have sent out referral forms to her Dr.s to get them filled out and as of last night we received them back so now we forward them to the stable and then set up a time and …………she starts riding.

What an amazing opportunity that is so perfectly picked just for her. What a blessing! We can see God’s hand in this.

There are other emotional side effects from this whole journey that we are working through and it can be tough at times, but there are a lot of things that are going so well. We keep praying and believing for miracles for Angelica’s physical body. It is so encouraging to be at a place where she rarely feels pain as opposed to the constant pain that she was in.

Thank you for your prayers, your encouragement, for your love, for your support. We couldn’t have done this or carry on without your support. We are so grateful to all of you.

Laughing Instead of Crying

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

5 Cycles Left

Angelica has 5 cycles of chemo left until she is FINISHED.

September 30th is the day that she stops taking chemo. It seems SO FAR AWAY and yet…..we only have 5 more cycles of monthly chemo to go until that day comes. It’s pretty exciting to think that when the new school year starts, she will have less than a month of chemo left.

Today we headed in for a monthly chemo appointment. We also needed to meet with the Physiotherapist as well as get an X-ray of her left shoulder. Initially, we were going to be getting an ALL DAY infusion on a drug that would help with the pain that she is feeling in her knees, but we changed our minds on that particualr drug after meeting with the Orthopedic Surgeon last Thursday.

Let me back up…..basically, since the Dr’s Diagnosed bone death back in January we haven’t had a really GOOD appointment since then. We’ve had a number of appointments but all of them have been very emotional or full of bad or depressing news. We have tried to stay strong and positive, but with each appointment seeming worse and worse, it’s been so SO tough.

We had a BIG misunderstanding with the Rheumatologist back in the beginning of April and then another BIG meeting with our Oncologist in the middle of April and while it was better….things were still confusing and sounded so……so……..so dark and depressing and negative. It was suggested that we start one drug to help with the pain and we thought about it and planned to go ahead. The Dr sent us a bunch of articles to read. Some of the info was good and some was not so encouraging. Isn’t that how it going with most meds??? Anyhow, We were supposed to start that drug today. It was possible that it might give her bone and joint pain and well as a fever and flu like symptoms like aches, fever, chills and nausea….sounds fun, eh? And, it would have taken all day for it to run…..awesome!!!! Not!

We met with the Orthopedic Surgeon last Thursday and it was a GREAT meeting. He believes that Geli’s case is a mild case of bone death and that she is still in the healing process. He believes that she will get stronger and stronger and that the pain should lessen. He also mentioned that as she gets stronger, that she should also have more mobility as well. These were also very positive things. He mentioned that it is possible that she may not need joint replacements until she was 40 years old. While that is earlier than an average age for joint replacement, it is WAY BETTER than being in so much pain and discomfort that she would need it in the next two years…..He also suggested against the medicine that we were considering because among other things, it can make the bones brittle and more suceptable to fractures. As well, if there are negative side effects, those can possbly stick around for a long time…..a life time even and well….that would not really be cool. Would it?

Of course, this is all a natural, medical opinion and we are still praying for and hoping for miracles. Just going to the specialist felt good. We walked away from the appointment feeling very hopeful. And that is SUCH A GOOD THING!!!!

We go back to see him in the middle of June.

Masked up

Today we had our regular monthly appointment and other than it being two straight hours of running around, it was a FABULOUS day and a GREAT appointment at the clinic. There was no traffic to start and we made it in with enough time that we weren’t rushing in from the parking lot. We went into the clinic, and Geli had to mask up as she’s had a nasty virus that’s been making it’s rounds through the kids. We were sent to the back of the clinic which is the long term appointments, but we stopped to talk with our nurse because we were not staying for the extra long drug. While they tried to sort out the confusion, they sent us down to Radiology to get the x-ray that the orthopedic surgeon had ordered for Geli’s shoulder. Geli changed into one of those cute little gowns that tie up in the back and we were to be up next when our nurse came and told us that physio was waiting for us. So we left Radiology and headed down to the PT department. They also felt that both her elbow that seems to be locked and her shoulder that is difficult to move are both from muscle tightness as opposed to being unable to move because of problems with the bones. This is a very good thing. Geli was given a few exercises to work on and we have an appointment that co-insides with her next chemo appointment.

I am hoping that with one month of focused effort that she will start to see some amazing and encouraging results in her physical body. We will be doing a lot of physio over this month and so if you think of it, you could pray that she will stay encouraged to keep on going and that she will see some results sooner rather than later.

After we met with the Physiotherapist, we headed back to the oncology clinic to get her blood drawn so that we could get her counts, as well as get her Chemo drug for this month. After that, we headed BACK DOWN to Radiology to finally get her shoulder x-ray-ed. The results from that will go to the Orthopedic Surgeon and then we will see him in the middle of June. When we finished with the x-ray, we headed BACK to Oncology to meet with Geli’s Oncologist.

It was a completely uneventful appointment. All of Geli’s stats look good. Her white counts are elevated a bit, but that could easily be explained by the virus that she is fighting off. She checked Geli out, increased one of her oral chemo drugs by just a tiny bit and sent us on our way.

All of that happened within 2 hours…….it was a FABULOUS day!

We have just recently made a few changes within our family and house and I’m hoping that those changes will have a more positive effect on all of us. I’ll hopefully be back tomorrow with an update about what’s going on with us……

Miscommunication and misunderstanding……

Yesterday was another tough day.

We had our monthly chemo appointment in at Children’s on Monday and we got talking with our nurse about the what we “thought” was in the wings for Geli as far as knee replacements and surgery and time lines and the more we talked, the more it seemed like something just wasn’t right…..or that something was missing.

Long story short….what we thought was in the works for Geli regarding her knees and surgery and stuff….well, the reality is way no where close to what we had thought we understood.

There is a whole bunch of information that we don’t know and we are going in this coming up Wednesday for a meeting with our oncologist, our nurse clinician Jon, I and Geli.

It’s so frustrating. Geli has been in pain everyday all the time for a long time now. It’s wearing on her. It’s horrible for us to see her in pain.

I fell apart yesterday. Couldn’t stop crying. Don’t really have the energy to get into it all right now, but the bottom line…..something has to change.

We are praying like never before….for a miracle, for answers, for something.

Could you pray for us? We are beyond exhausted. Every blow feels like a HUGE hit and we are finding it harder and harder to cope with the blows and ever more difficult to recover from them.

I’d love to be able to explain a bit more, but I just don’t have it in me.

Pray for Geli
Pray for Jon and I
Pray for the kids

Thanks.

The Ups and Down of Life

I feel so……so……so caught up inside myself.

There is so much going on and I don’t know where or how to unpack it all. I had a phone chat with our social worker from BC Children’s yesterday and kind of fell apart on her.

I’m tired. I want some help for the kids (and myself if I’m being honest) and “the help” (therapy type help) available, is at BC Children’s….an hour away from here. (We have no extended medical to help cover the expenses for other help and so we’d be paying out of pocket for other help, which we may just have to do…..)

There is a sibling support group that is just about to start, but…..it’s on Thursday afternoon’s for an hour and a half FOR THE NEXT 8 WEEKS.

That’s not really very helpful. If we missed traffic (which would be a miracle – we’d be in traffic for at least one way), we would be driving for 2 hours to go to a meeting for 1.5 hours. And I’m not sure what Geli, I, Siah and Judah would do while the older 3 were in the session. Then we’d be leaving at dinner time (and sitting in that lovely traffic I mentioned) all the while hoping that the baby wouldn’t fall asleep in the van so that he wouldn’t be up until midnight. There would be dinner to figure out and homework to work around and well….it’s just more of a problem than a help…..

I am already running below empty and I can’t fathom adding 8 weeks of that stress into our lives….so where does that leave us………?

Not in a great place, that’s for sure.

I know that we need to get beyond “this time” and that things will look different in a year from now and hopefully things will be easier but I am so tired and worn out, I’m not sure what shape I’ll be in, in a year from now. We’ve been looking forward to “this season changing” for what feels like a very long time and it’s all seeming so very surreal and even unattainable at very low times. We have to believe that things are not always going to be this tough. We are not looking forward to the future as a “magical time of amazing-ness” but we are trying to hold onto HOPE with what little strength we have left, but sometimes, even that feels so very difficult to do.

Our social worker asked me what things I could take off my plate so that I wasn’t so overwhelmed and to be honest…..I have no idea. I’m already doing the least amount of housekeeping that I can and still have us be functional. And that right there…..is so tough to deal with. I like a clean, neat and tidy house. I feel like I’m drowning….not even like I’m treading water anymore, but that I’m sinking deeper and deeper under. I have no time or energy to keep on top of all that it takes to keep our family running smoothly and my “coping mechanism” is to “fill another box” with the crap that gets piled up on my counters and then take it down to my bedroom.

It’s definitely not a cool way to deal with things. I think I have 6 boxes downstairs with “crap” that needs to be sorted through. It’s all I can do to stay on top of my laundry and well….besides the fact that I have the worlds smallest laundry room and 7 people’s clothes and towels and linen won’t fit in it…..we just need the clothes to wear. The boys only have about 3 pairs of pants each and depending on how messy they are we could plow through 2 or even all 3 of them in a day. NOT COOL, boys! NOT cool!

Obviously we have to eat and trying to feed a family of 7 economically, while eating a gluten and dairy free diet….well, it’s extremely challenging and sometimes I just wish that we didn’t have to eat.

A significant portion of my time is spent homeschooling Jeremy and breaking up fights and squabbles between the two little boys. A few people have asked me if that’s something that I should off load and just send him back to school. Maybe even a different or new one……to me, this is not even an option. For the first time in his life, Jeremy is EXCELLING in school. He hasn’t gotten a mark that’s been less than an “A” for 2 months now. He feels smarter. He’s ACTUALLY retaining the information that he’s processing. If he doesn’t LOVE school, he at the very least enjoys it, now. As much prep work as it is for me…..and let me tell you, teaching ONE CHILD has a significant amount of prep work and time spent overseeing what he is doing…(I can’t fathom teaching 30+ kids with more than one of them with Learning Differences or other social issues)…..this is something that I believe is CRITICAL right now. I firmly believe with all my heart that Jeremy is learning valuable LIFE SKILLS that will impact him for the rest of his life. To cut this time short, would be devastating, in my opinion. Even moving him to a new school…..he doesn’t “YET” have the skills needed to make a change, and I believe that he would end up in the same position that he was in….behind, feeling stupid and bullied……

So basically, I get up in the morning…….. I sort of teach school. I try to care for my little boys. I attempt to feed and clothe the family. I clean, and it is an extremely loose interpretation of the word, the house and then it’s bedtime…..

For “ME” time….I “try” to work out 3 times a week and while that’s a good thing…I feel like it’s an hour and a half of hellish torture that I enjoy once it’s finished.

Regardless……something has to change, I’m at a breaking point….I’ve been thinking about getting someone in to help out for a few hours a week….maybe twice a week….to help with the little boys and maybe some housework….I dunno….I’m not sure where to find someone, or how exactly to go about it all, but I have been thinking about it….so….that’s a start, right?

Jon and I are missing each other….it’s been so long since we’ve had any time to just “be” together and that’s tough. Even our evenings are crazy. The boys have been particularly needy over the past couple of weeks and haven’t been settling until after 9pm even though we’re starting the bedtime routine at 7:30pm….I dunno if they’ve been feeding off the extra stress……or what the issue is? Whatever it is….it’s not cool!

We did, however, get the chance to get away as a family. Last weekend, we were able to go to a cabin down at Birch Bay for two nights and it was a wonderful time away. It wasn’t so much of a rest….as it was a change. A chance to get away from the house and feeling a need to clean and tidy. The kids played. Nothing “could” or “had” to be done….probably the biggest downfall was that we wanted to pick up a few clothes while we were down there, but again…..shopping (or pretty much doing anything) with 5 kids is…..um…..interesting…..and we didn’t get done what we had hoped and that left some of the family feeling like they were disappointed. We should have just gone down and not hoped to pick up a few things….that would have at least not set us up to fail…..

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that’s Jeremy in the bottom left of the picture

I have a TON of pics from our time away and I’ll share some of them in the next post. It really was a beautiful place and right on the beach…….like RIGHT ON the beach. The smell of the air, the sound of the waves, the seagulls crying…….it was amazing. Truly, truly amazing. I love the beach. It really is a “Happy” place for me. We are SO THANKFUL to the family that made it possible for us to get away. It was INCREDIBLE! SO, SO INCREDIBLE!

Through The Valley of the Shadow of Death

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

She starts physio and OT on Monday at GF Strong.

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

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

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

Normal is gone……and we grieve

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

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

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

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

Double Knee Replacement!

Shoulder Replacement!

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

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

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

It’s a lot to deal with.

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

This is tough.

So painful.

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

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

This just feels like too much.

For all of us.

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

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

It’s overwhelming and we cry…..

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

We will get through.

Nothing will ever be as it were.

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

We must find a new normal.

Again.

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

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

It’s getting harder and harder.

It’s just really hard!

Tonight is a bad night.

Hopefully, tomorrow is better!