Everything is Same-Same

The xrays of Mathew’s lungs were normal. Good news!

The family doctor and I chatted about terminal cancer vs palliative care. Mathew right now is terminal, not palliative. We know he has cancer, it is growing and there will be no further treatment.

This terminal state is the unknown variable in terms of time left. During this time, Mathew’s symptoms are treated. There won’t be further tests because they aren’t needed…. I’m still having difficulty with that one though. I want to see what is going on in his body! Are those wretched tumours growing very slowly? Are they in other places in his body? What kind of time do we have? This “treating the symptoms” is very hard on all of us.

The last time Mathew was out of the house was over a week ago. I went out briefly, earlier this week, and that was it. Today I officially morphed into cabin fever status and I.am.going.out. tomorrow. Anywhere. Anyhow. Just out and that means beyond our deck! I plan on dragging Mathew out with me and told him so. It could be a movie or dinner out…I don’t care ~ just let me OUT!!

This is our first weekend in a while without guests. It is a good time to take a breather since next week is a concert John and Mathew are attending in Moncton. If Mathew is well enough. I’ll be the getaway driver; hanging out in the truck and ready to make a quick drive-by to pick them up if Mathew feels too sick to stay for the entire event. Please don’t feel sorry for me. I prefer sitting and snoozing in our truck to attending this concert. I’m not sure who “Five Finger Death Punch” is but I listened to a little sample of their music and the truck and a book look pretty good to me!

So…have I mentioned Mathew’s days and nights are messed up? I think I did say something in the last post. I stay up with him through the night and go to bed when he does; around 6 in the morning. I’ve seen more consecutive sunrises and sunsets lately than I wanted to. It isn’t an energy filled fun night people, so I’m not cooking up a storm or deep cleaning the house. It is more like a continued stupor and not sure of the day or hour anymore.

This time is a hard one to live. I can’t put into words how it is to watch each minute go by, wondering how long this terminal phase is going to last. A couple of months? Several? A year? Life remains on hold and you just wait. Wait for something. It’s coming and you don’t want it to.

You don’t make plans because you don’t know if you can. You don’t do anything on a “regular” basis because there is no regular. Mathew’s health and how he is feeling changes on an hourly basis so whatever you end up doing is a last second, mad-dash-for-the-door event. Then, when you are out doing something you have to be prepared to drop everything and return home on a moment’s notice when Mathew suddenly tires out or feels sick.

In other news, Kristen won a job competition and moved from a casual position to a term position. This is a positive step forward as she is entitled to health and dental benefits. It meant a pay increase which sweetened the pot too! Two weeks ago Kristen moved into an apartment with a roommate and was busy buying her first bedroom furniture. Her roommate already has furniture from previous apartments so they seem to be all set. She is very excited about having her own place ~ and our thanks go out to my younger sister, Dominique, who accommodated Kristen in her home until our girl was ready to go out on her own. Dom, you made the transition so much easier for Kristen and us! Thank you!!

As it is now 3:30 am I doubt this will make your top choice for a well-written and well-thought out post. It was either a quick scribble when I could or a prolonged silence.

I find it hard to write at the moment. There are so many thoughts and emotions running through all of us and underlying exhaustion to add to the mess. This transition period is the precursor to palliative care which, I’m sure you know, is the end of life stage. I am simply not able to put into words all the things running through my head.

Good night and good morning!

Small Changes

I am off work, on compassionate leave now. The Government gives 26 weeks off to care for a family member who is gravely ill and has a significant risk of dying within 6 months.

John and I noticed a small change in Mathew’s daily routine ~ enough to make me want to be off with him. I’d rather be too early than…well, let’s just say too early.

Mathew’s appetite isn’t what it was even 3 weeks ago. He is sleeping more and needing more morphine. Another symptom started about 2 weeks ago; his chest hurts and he says it is harder to breathe.

So far his lungs sound normal but the doctor did say there is no way to tell if his lungs are working at capacity any more. He had an xray yesterday and we shall hopefully get results this Friday. There is a thought perhaps he has pleural effusion in a lung or both. It could explain the pain he’s experiencing.

Mathew’s schedule is his own now. We quit the sleeping pills for him because they weren’t working anyway. Even at the full dosage and trying a second prescription nothing made him sleep!! After several weeks of giving him sleep medication only to see him stay awake all night was enough for me to toss them aside!

Right now Mathew doesn’t have a lot of interest in leaving the house. It is taking around 5 days to get him to even think about going out. So we hang out in the house, alternating sleeping and tv or internet. Thank goodness there is a great selection on Netflix and in the movie department!!

With our crazy schedule it is hard to keep up with this on a daily basis. I’m not seeing a change in Mathew’s health daily yet either which is a GOOD thing! The extramural nurse was in today and we went over the list of things to watch out for. There weren’t many checks on the “progressed” side of the page.

Extramural is going to look at what options there are for a hospital bed for Mathew. When they know what is out there they will give us the information and when Mathew’s breathing becomes more laboured we will consider it then. Mathew still wants room for us to hold his hand or hug him.

Right now Mathew is eating 1 to 2 meals daily and often not a lot. Time will tell if this is a new permanent change. He is a bit more selective in his food choices and often will turn down or leave food alone.

We are also looking into whether or not his power port needs flushing anymore. I think Dr. Burnell wanted it left operational in case Mathew opted for more treatment. Palliative care does not use the port for any reason so Mathew might be excused from further monthly flushes. He just had the port flushed yesterday and being at the hospital stressed him out again; even with an Ativan to keep him calm. The idea is to minimize any hospital trips unless absolutely necessary.

So I’m hoping the xray won’t show any fluid in the lining of his lungs. I will let you know after we find out.

Thanks for hanging in there with us!

Summer Marches On

Well it has been a while since I last posted. Things are going as always which means everything is ok.

We’ve been busy with Mathew; visitors popping in and us taking little day or weekend trips. We took Mathew to Bangor 2 weeks ago and it was rough on him; he spent half the time in bed, in pain. He did manage to get a bit of shopping in and found some items he wanted. It wasn’t like the good ol’ days though when we shopped till we dropped. I managed a side trip into a curtain shop and spent a heavenly hour or two in there just admiring the selection. We also managed to eat a couple of good meals, one at Applebee’s, a second at The Texas Longhorn, and a third at a small place called Evolution Burger. It serves organic, grass-fed beef for its burgers and the meals were very good. It was a long wait to get the food however ~ I suspect they might have been growing the grass to feed the beef, etc.

Yesterday we drove up to Fredericton and had a lovely visit and meal with Alistair and Denise and company. We had promised Mathew a quick trip to Toys R Us at the mall there but as our luck goes, a wicked thunderstorm scuttled through and blew some big transformer that knocked out power to the shopping area of Fredericton!

Kristen has been home twice since I last posted, basically every long weekend. She takes an extra day now so we get a bit of a longer visit but the time goes by too fast. Mathew likes it when she’s around and misses her, as do we all, when she leaves.

John’s father had a mild heart attack…not exactly sure when as he thought the pain was related to indigestion. It took a bit of persuading for him to finally get checked out. It turns out one artery was 99% blocked and a second was at 90%. He got himself two stents and went home two days after. The upside to this is we now know his heart is in good condition and will work for a long time yet. Seriously folks, the hospital would rather be the one to determine if the pain is heart burn or if it is a heart attack. Let them check you out ` at worst, it might be embarrassing (big deal guys!) and at best they head off something that could be a significant event happening.

I haven’t mentioned yet that we lost our last pet a few months ago. It was discouraging when we put our cat, Spook down. He was 16 years old and had literally gone bonkers. It was depressing and not something I wanted to talk about on here right away. I think it was in February that Spook went off to animal heaven.

After Mathew was told there is nothing more that can be done to stop the progression of his cancer, I asked him (a couple of days later) if he wanted to pick out a cat. He did. He wanted to rescue a cat from the SPCA and so we visited them and found Gimley. Gimley is about 6 years old, is a male tabby (neutered of course) with green eyes…slightly crossed. He had been hit by a car and left by the side of the road for at least a day before anyone called the SPCA to report him there. Gimley had a broken leg, a squashed paw and I don’t know what else. This was back last December and his mandatory cage rest made him a beefy guy. I mean so big my eyes popped out when I first saw him! His name at the SPCA was Essex but Mathew renamed him Gimley, after the tough, little dwarf in the movie, “Lord of the Rings”. Gimley is an affectionate, friendly guy who definitely likes his food! He often sleeps on Mathew’s bed at night which brings Mathew comfort.

Mathew had his hair cut and dyed bright pink a month or so ago. He figured if not now, when? The colour has faded enough that now he is thinking he might go for a brilliant green. Or blue. I take him to hair dresser for this; he likes the attention and I like a professional taking care of it!

The Palliative care doctor and nurse (from Extra Mural) did come to our home and start Mathew’s file. For now the nurse stops in every couple of weeks to monitor how Mathew is doing and to address any concerns that may have cropped up. We did go in to see Dr. Burnell and to say we didn’t want to bring Mathew to the hospital anymore than absolute necessary. This leading to our not seeing Dr. Burnell anymore. She certainly understood the distress the hospital causes Mathew and the wait to see her (her appointments run chronically late). I don’t know who all plan to be involved in Mathew’s care when things get bad but until then, the family doctor and the palliative care nurse can manage. Every month though, Mathew will still get his port flushed. Dr. Burnell requested this and I expect it will be used to manage symptoms when the time comes.

We have had a few bonfires this year. I enjoy them and so does Mathew. John drives him down into the backyard in the truck and then back up when Mathew tires out. We usually have people join us and it is such a nice time. The last one we had we ended up sky-gazing; shooting stars, satellites tracking overhead, airplanes. What excitement from our very own backyard! The roasted marshmellows, chips and drinks help too.

I find it more difficult to talk about Mathew dying. I spend as much time with him as possible, trying to memorize his face, his smile, his voice, his laugh… and it hits me harder each month that goes by. There is grieving now for what is to come. I can plan and talk all I want but when reality slaps my face I know that I just cannot yet truly imagine how awful the grief is going to be. I can’t talk about it. It makes me cry and I don’t want that right now. I want to enjoy here and now.

Sometimes I think my posts come across airy and nonsensical. I am a person whose feelings run deep and when I re-read something it looks cheap and fake. I also don’t have a lot of free time where I spend it on the blog, but I am trying.

Today’s post I am not even proof reading or rewriting like I usually do. If I did that it wouldn’t get out to you and I know some of you are waiting for an update.

I joined Facebook groups about Ewing’s Sarcoma. I have already reached out to some mothers who lost their kids to this cancer and asked them to stay close because I will need their support when the time comes. They will understand the best of what I am going through and how to get through life after Mathew is gone.

Quite frankly I don’t want life to continue after him but it will. There are others whom I love who are dealing with their own health issues and it is just lucky that I’ve lived this long without significant sorrow or people passing away. It isn’t a place I would wish on anyone and it just feels like a lot to absorb at once.

On that less than cheery note I must get to bed in preparation for another working week. Mathew is very angry that I’m working and he goes between angy comments and tears. It is enough to rip your heart out.

Time Marches On

Sometimes I can kid myself that we are still living normal lives.

Then I get another punch to my gut.

Yesterday the palliative care unit at the hospital called to arrange Mathew’s first visit with the pain and symptom management specialist on Monday. The palliative care doctor likes to visit in the home so she is coming here to open his file and start the paperwork.

It is important to have this underway before Mathew gets sick or exhibits worsening pain so action can be taken immediately. We also have to go over end life instructions, like the DNR order.

DNR is short for Do Not Resuscitate, in the event that Mathew’s heart stops. Apparently without him instructing the hospital on his final wishes any family member can force the hospital to take extreme resuscitate measures… something to do with the hospital being concerned about lawsuits. Can you imagine? I hope every single family member reads this because the instructions will be there and will be very clear.

I have to be clear about this right now. Mathew and then John and I have the only say in how the end comes. If anyone even thinks about stepping in to challenge any of the decisions there will be hell to pay and I will make your life miserable. I’m just saying. I cannot imagine any member of the family, after watching the effects of this cancer on Mathew, wanting to prolong his life if this cancer takes over his body and causes it to shut down.

So this along with the first “after treatment” appointment with the Oncologist coming up shortly, is a stark reminder that the clock is ticking. It hits me and cracks the veneer that I carry out daily life with. I get a glimpse of our future and fall apart.

I realize that it has been a month, if we are seeing Dr. Burnell again. A precious month has gone by…one month already, how can it be? I want time to stand still! I don’t want another day to go by!

One day something will happen and my façade is going to shatter. I will not be able to function after that. I already know I won’t be able to work or do anything but pull myself together enough to see Mathew through his darkest days.

In the meantime I hang on to every precious moment we have. I enjoy ever banal moment, whether it be watching that wretched wrestling yet again, or listening to his extensive repertoire of music. I want to hear every word he says and I want to remember all of it. I want, after grieving if at all possible, to be thankful for the gift of having Mathew as my son and for having this time together.

A Good Day!

We had our first bonfire last night.
It had been tentatively scheduled about a week or so before but with our weather lately I wasn’t sure it would happen.

Mother Nature looked kindly on us and it was a beautiful, warm day. My sister-in-law Linda and her kids were in town for the weekend (to celebrate Father’s Day) and most family were able to drop by. Alistair, Denise and Sara popped in during the afternoon but couldn’t stay for the evening ~ and we missed them!

We missed the other family members who couldn’t be there and I definitely thought about Kristen. She was enjoying herself in Ottawa so I hope she doesn’t get too homesick looking at these pictures I’m putting on below.

Mathew participated for the whole day once he woke up. His cousins Grayson, Callum and Jack came over shortly after noon however Mathew was still sleeping. They went out on the lake with the canoe and kayaks for a couple of hours. The sun was intense enough to burn a few shins where the suntan lotion didn’t get slathered on… the lower legs kind of looked like cooked lobster and hopefully the boys aren’t in any pain today!

By the time the sun set the first bonfire of the year started and we gathered around the firepit. This first photo shows Harry’s jeep by the fire; Poppa and Mathew both got rides down the side of the house to the backyard; neither could manage the stairs well and so they got a lift down and when later on, back up to the front of the house.

DSC_0945

Harry dropping Mathew off at the bonfire

John is bringing some more chairs down off the back deck to go around the fire. In the background, Jack and Connor are preparing to take the canoe out on the lake for a paddle around. They were out there for a while and appreciated the warm fire on their return.

In this next picture more chairs are fitted around the firepit and Harry is parking the jeep off to the side.

This is our backyard. We are about a 2 minute drive from the main street in the town we live in and a fifteen minute drive from the city of Saint John. It is my favourite hang out back here where I can watch all the wildlife go about their business.

DSC_0946

Family gathering around the bonfire

DSC_0948

Sitting around the bonfire

Once the sun set it chilled off quickly. We pulled a bunch of blankets out of closets and brought them down to wrap ourselves up. It was a beautiful night – no clouds and a full moon. That is Poppa and Nana enjoying the get together; we celebrated Father’s Day a little early since a lot of us were present with Harry Senior. Jean/Nana and Harry Sr/Poppa are the greatest in-laws and grandparents you could ask for. I was so pleased they were able to join us.

The seat with the blankets piled on it is where I sat, next to Mathew. Ben and Hannah are to the left of my chair. Ben and his girlfriend, Hannah, purchased their first home about two months ago. Can you imagine? They bought a beautiful two-storey home and had a welcome bbq about 2 weeks later ~ and everything was put away, no boxes strewn about…and it looked like they had lived there for a few years already!

DSC_0949

This handsome guy is our nephew Connor. He joined us after his work shift ended. He ended up sitting at the receiving end of the smoke until we noticed his discomfort and shift all the chairs over so he could get out of the smoke. It wasn’t until later that evening when I walked through the smoke myself that I realized how potent it was!

I’m not too sure what John and Harry have going on at the Jeep behind Connor. John was probably dissing the Jeep again; all in good sport though. Harry makes fun of our Honda Ridgeline and John likes to repay the compliments. For the record however, both vehicles handle the hill at the side 0f our home just fine!

DSC_0951John checking on everyone and the fire. You can see the full moon rising just above our deck. The night was lovely with a clear sky and full moon but it got downright cold once the sun set!

The two younger ladies that look thrilled in the back there are two of our nieces. True to today’s youth we could see them on their cell phones throughout most of the evening. They did roast some marshmellows for willing recipients before retreating back to warmth of blankets.

DSC_0954

John enjoying the fire

Grayson in profile. Behind him is Callum. I was trying to take a picture, unnoticed by either of them but that very slight red light you see is something in my camera bouncing off of them giving me away. Rats. I’m going to have to explore all the functions on my camera more closely!

DSC_0956

My brother-in-law, Andy, enjoying himself. He grew chilly last and I asked one of the nephews to grab something from the house for Andy to warm up. I suggested checking Kristen’s room for blankets, etc as that was closest for a quick search. He brought the sheets of her bed and Andy got the lovely pink one! He is always a sport about these things and after I took this photo he actually pulled the sheet up and made himself a pink ghost! I’m not sure if his daughter, Ella, noticed ~ or what she said if she did. She’s a teen now and antics like that can be a little embarrassing to a young lady. I thought it was funny.

DSC_0957

Andy in all his pink glory!

DSC_0958
The party broke up around 11 pm. In this photo (below) Harry is driving Mathew back up to the front of the house. It is one level on the front so Mathew doesn’t have to use any stairs. When we purchased the bungalow, walk-out basement we never dreamed how it would ease our life when Mathew got cancer in his spine and couldn’t walk very well!

DSC_0960

Harry driving Mathew back up at the end of the evening

Earlier in the day just as the three nephews first showed up, John and I had been discussing putting the sun gazebo up on the deck. It hadn’t been warm enough prior to yesterday and luckily for us, three strapping young men showed up in the nick of time! They helped carry the parts up to the deck and then helped build it. Everyone spent the afternoon and early evening sitting under the shade it provided and it felt like summer finally arrived.

Yesterday was such a welcome reprieve from the heaviness that our hearts have during this most difficult of times. The poignancy of the day was not lost on John or I and probably not on anyone else either. We are aware, Mathew included, that with the prognosis of months to live, he might not be here to enjoy this next year.

It makes me treasure these moments ever so much more. I am so grateful for family and friends who are stopping in to visit. It means a lot to Mathew and he is well enough to enjoy it.

Good night all and Happy Father’s Day to my side of the family ~ I hope you were treated a little extra special today.

It Doesn’t Get Easier

Tomorrow is one week since we learned of Mathew’s latest scans.

With each person we tell the news gets harder to bear. It becomes more real every time I hear it. The future presses on us with time remaining growing shorter each day.

Life gets shorter for each of us with every passing day but it doesn’t seem as imminent as Mathew’s end date.

I got a ruler out today and looked at 1.4 cm. It’s big…way too big for just a few months’ growth. Put that one together with the other ones growing in the left lung and you realize the cancer is starting to cover too much space.

It hit me like a wall of bricks that he won’t be here too much longer to share my day with. To watch a movie with or hang out…

Oh boy. It’s harder than you can ever imagine.

Weep With Sorrow

I haven’t posted for a long time and for that I apologize. Many events have kept me/us busy and I will get to them…just not today.

Today I tell you the results from Mathew’s last scan and our follow up appointment with his Oncologist.

It isn’t good.

Not at all.

Mathew is done treatment and nature will take its course. As Mathew asked during the appointment, “Does this mean I will die?”

Yes, Mathew. I answered. My heart breaking.

In months.

The old tumours grew and there are new ones in his left lung; now in more than 1 lobe. One new one, not previously seen, grew over 1 cm since his scan (that was in March). Mathew’s Oncologist told us these tumours tend to grow exponentially. For those who aren’t sure what that means…. it means it grows faster and faster. It gets big fast. Ewing’s Sarcoma is a hell of a nasty cancer people and there is just no way around that.

There are no new treatments found in the last 30 years. Less than 3% of money raised for cancers goes towards pediatric cancer.

How would you feel if this was your child?

I know you want to help but sadly, there is nothing you can do. We appreciate the thoughts, prayers, etc, but it is not helpful to tell us he will be with God soon or that his pain will be over. We are not religious nor do we believe in God. Do not tell me to hope for a miracle. There won’t be one. Don’t tell me to be positive or to look on the bright side. I will tell you to go to hell.

Just BE. Be around, visit Mathew, continue life. Life will go on both now and “after”. I don’t want it to but I know it will. Be thankful your life is going well, I am so happy for you ~ I would not wish this on anyone. It is few and far between who are not touched by sadness and or tragedy at some point in their lives so I am honestly happy if your situation is good. I want it to be.

Mathew is okay. He wants us near him and to hold our hand when he gets scared; which is when he goes to sleep. He is talking about it, worrying about you and his friends… he is free to talk about whatever he wants. There are resources in place for him and his family doctor and Oncologist are continuing care and will bring in others as needed.

We are functioning, some hours better than others, some days more than others. We want to plan little day trips and visits to keep Mathew’s spirits up for as long as possible. He will continue to see movies, visit friends, etc, until he is not well enough to. So don’t be shy! It’s okay.

It’s okay to cry. But not in front of him. He doesn’t want you to.

Now I’m going to go and hang out with my buddy.

Hope

One small, four letter word.

Everything we wish for is hidden in that word.

As time goes on between scans and treatment, the mind tends to forget why Mathew’s treatment for cancer continues. Instead, hope creeps in a tiny bit here and there. Hope that the next scan will give us good news.

For once.

That is why it is devastating when we hear that wretched cancer continues to grow in Mathew’s lungs.

With warm, sunny weather finally upon us and a forthcoming trip to Ottawa on the horizon thoughts of the next scans are pushed into the farthest corners of the mind. As the calendar trudges on toward the next scan date, towards the end of May, hope and fear creep out to the forefront of our thoughts. Each fights for dominance in our daily life and each teeters back and forth, putting our lives into chaos once again.

Until we sit in the Oncologist’s office one more time… fear and hope causing the omnipresent “scanxiety” which is so familiar to all cancer patients and their families. It is enough to put you on edge, tears ready to spring forth all the while your stomach turns and turns.

Until the moment we hear the results.

For two and a half years, with one short-lived exception, fear wins and our hopes are dashed. The devastation grows each time we hear another result where Ewing’s Sarcoma refuses to  leave Mathew’s lungs. Fear that the next treatment and the next scan will carry worse news. It rips your spirit and cracks the heart when once again, treatment didn’t work.

We may look like we are enjoying ourselves. The movies, dinners out and chatting with coworkers and family, etc, are a great front.

Please don’t kid yourself that things are normal behind our closed doors. The end of May is coming and another wretched scan. Mathew’s anxiety is growing and ours latch on for the crazy ride. It affects him directly and he fears more treatment and he knows this cancer is so very, very hard to shake off. How desperate we are for some good news.

I may look like the old me, but I’m not. The shell holding the fear in is thin and is cracking. In early June we will know again, if we have to pick up the pieces and try to carry on with the overwhelming threat of a stubborn, metastic cancer resisting treatment one more time…. or if we will all have wonderful news that will head us off into a good summer.

The odds, my friends, are not in our favour.

Hope….hope…..hope…

Winter’s Last Gasp

So we were so fortunate to have an El Nino winter that all us snow & cold (and ice!!!) dislikes…well, dislike. There were very few storms and only a couple of times that our snow blowers were revved up and used. The rivers and lakes opened up much earlier than usual and spring feels pretty close!

Winter isn’t quite done with this edge of Canada yet! The last 2-3 days the temperature was cold and snowflakes and a bit of accumulation drifted down the street and across lawns. There is a Nor’Easter expected tomorrow night…oops, TONIGHT since it is 3 am on Sunday!! It is supposed to mosey into Monday and possibly dump up to 20 cm on us.

Just go ahead and do it, Mother Nature. I know this winter is done and I’m glad to see it go. It definitely helped our mood to have it green as it was although the skiers, skaters and snowmobilers aren’t happy at all. Don’t feel sorry for them because last winter was all about the outdoor sports with those mountains of snow we got. I still haven’t gotten over that yet! A good, fair compromise is one snowy winter and one green one like this year. Keep each side happy 50% of the time. If La Nina comes along next year it will be fantastic for anyone who participates in outdoor winter sports. She\s the nasty little sister that puts the world back in place! I still remember the last El Nino/La Nina we experienced, while we lived out west in Edmonton, Alberta. El Nino was lovely and being our first year out there, we figured it was an indicator of Alberta winter. HA!! The next winter La Nina pushed through and because John was either training for Bosnia, or was in Bosnia, you-know-who had the shovelling detail.

It was brutal. It freaking’ snowed almost every day. I’d just returned to work for the first time since having the kids and John left the same day I started my job with the government. The kids weren’t happy about the babysitting situation and I was just plain exhausted and feeling guilty about everything. There were times I left them buckled in their car seats when we got back from our day; left the motor running and their music blaring while I shovelled; with snacks in hand so they could see me and I could see them and know they couldn’t reach each other (hence the buckled car seats!). That was one of the worst winters in terms of stress.

Anyway, so bring it on. We are close enough to the coast that it often turns to slush and mush. It’ll be gone very soon ~ just don’t mess with NEXT weekend, which is EASTER. Kirsten flies in on Friday and flies back to Ottawa on Monday. I will be severely annoyed if anything messes with her flights!! Or her visit!!

This last week saw all of us in this house finally fall victim to some lousy bug going around. Here I was thinking we might be spared one winter from a cold or flu but no; it just got put off until the bitter end. John got it first and then me and finally Mathew. Mathew and I spent the last 3 days in bed and only rising for bathroom breaks and medicine. I don’t know if it is a cold or flu or some combination thereof. I just know that as my nose and eyes streamed liquid crap and my lungs hacked up their own special brand of hairballs (ew!) AND with that snow, we were mighty miserable. Mathew always takes a long time to recover from this kind of sickness, even before his cancer. Now we watch him like a hawk in case he takes a sudden turn and needs to see a doctor pronto. He likes that; someone is with him all the time.

Me? I’m just about the most miserable, cranky sick person and I just want to be left alone in my little corner of the bed to curl up and whine about everything until I feel better.

Not an auspicious way to see winter out but maybe it is like that March wives’ tale: in like a lion and out like a lamb? This year March whimpered in and now with this late weather…out like a lion? Maybe it is the same with this bug we have.

Just let us be over it before Kristen comes home next weekend!!

I’ll bet that nasty old “jump ahead an hour” time change last weekend had something to do with our current state of health. Our bodies DO NOT like the time change, be in just one hour difference. The older I get the more I despise the time change. One of Canada’s provinces doesn’t do the time change; Saskatchewan. It doesn’t hurt them at all and twice a year they probably laugh their heads off at the rest of us silly folk scrambling not to be late or early that first Monday after the time changes. It’s time we-the-people put a stop to that craziness once and for all

I am looking forward to sitting on our back deck and soaking up some good weather. This winter was difficult; an accumulation of everything just wearing us all down bit by bit. Losing the last two of our animals was a blow that even a month later I’m still getting used to. Don’t get me wrong ~ I do NOT want any animals for the foreseeable future, but I miss the ones we had. Then Mathew being in chemo again, with only a “stable” end result. Yes I’ll take it but after 2-1/2 years it gets to you. Our lives changed so much and there is no escaping this reality we now live. The winters seem longer each year and it is harder to come out of that winter blahness. Our deck, overlooking our little lake and all its wonderful wildlife, is our oasis and mediating station. I often spend chunks of time just sitting and watching the world move by; listening to the birds, watching an Eagle dive for its meal…seeing the ducks out with their new ducklings; listening to the Canadian Geese honking their arrival; looking for the beaver to wake up and start cruising for meals and twigs to fix its dam. I watch the dragonflies fly ever closer; they are inquisitive creatures and often land on my hand to check out the giant before it. There is a murder of crows who apparently own our neighbourhood and you can hear them move between the trees along the street and call out the news as they do so. Sometiimes I catch them in a tree out back, peering into the house when I’m in the kitchen!

If you slow down enough all of these little busy happenings start to emerge and the noise from nature, combined with the fresh air and sun, do their work and thaw out the frosty soul.

Who knew when we purchased this property upon our return from Alberta, almost 9 years ago, how critical it would be to helping us through some of our darkest hours. I don’t have to go anywhere for a piece of heaven or a peace of mind. I just look out the window and if it is nice enough, step out onto the deck.

On that note, I shall drag my sore throat and phlegmy lungs off to another few hours of sputtering coughing fits and honking the ol’ schnozz.

Mathew is Now 23 Years Old

Wow. Where did the years go?

 

It seems like yesterday Mathew was born. John and I moved from Lahr, Germany across the pond then Canada to the west coast…specifically, Nanaimo, British Columbia. We were back on Canadian soil for a mere 3 weeks when my water broke unexpectedly and 24 hours later our first child was born.

He was 6 lbs 12 oz and had no fat on him whatsoever. He was born at around 37 weeks so was considered a full term baby. He didn’t cry much for those first few weeks and feeding him was an issue. He didn’t sleep any length of time nor did he eat any great quantity at a time.

He was a gorgeous little fellow. Mathew had blonde hair and the most beautiful smile.

Little did we know what a tough life this child of ours would have! He didn’t sit until he was 15 months old and he never did crawl. He rolled everywhere instead. When he started pulling himself up and walking at 12 months he fell over, stiff as a board. It wasn’t until Kristen was born the following year that I saw that babies tended to bounce down on their bums and then maybe fall over. Not Mathew ~ he fell in a straight line!

When he was one the family doctor first picked up on his developmental delays. Shortly after we moved across the country to New Brunswick and it took another couple of years before he was seen by developmental specialists that set us on a very long and weary path.

In addition to being diagnosed with autism at age 4 (mild), there were his gross motor skill delays and other developmental delays. There were his daily difficulties in handling life, period. He did get upset a lot. It would be another 12 years before Mathew was diagnosed with a mood disorder that finally changed his, and out, life with the medication he was prescribed.

In school kids weren’t kind to him at all. He was bullied mercilessly and finally in grade 8 I took him out of school until the school board found a safe alternative for him to learn in. That is when he flourished the most because he learned at his pace and with a modified school curriculum for half days. His high school days were also better as by then kids in general weren’t so hell bent on making his life miserable and precautions were taken to keep him safe and away from taunting students.

It wasn’t until he graduated high school and started at Key Industries in New Brunswick that he finally felt like he belonged somewhere. He had friends at this non-profit centre for the intellectually disabled and he was happy.

It wasn’t too long after however, that those first insidious pains in his leg started that led to the diagnosis of cancer several months later. That was 2-1/2 years ago and he is still fighting the spread of the disease from his spine to his lungs.

Mathew has endured so much in his 23 years, more than a person should. When I think back to those first few days after he was born, gazing at him in awe and adoration… none of us knew what he was in for. I thought we would do a fine job of protecting him from the dangers in life. I imagined him tall, handsome and blonde with that hair of his.

He is tall, handsome and somewhat blonde when his hair grows in between cancer treatments. He has the most gorgeous smile and an infectious laugh when he gets going. He loves his anime, wrestling (entertainment style) and movies ~ oh and let’s not forget his gaming devices!!

He is my sidekick and we’ve carved a life out together as we face this greatest challenge of all; cancer. Over the years of trying to figure out how to help him and discover what his world was….he did much to mold me into a better and kinder person. I have a lot of patience with life and let a lot of the little stuff slide. I let go of a type A personality and definitely groove to a sedate lifestyle. I rebelled against this child who couldn’t conform to society’s standards and who had us a part of that difficult world of his.

Some years ago I learned to stand up for what I believed he needed and that gave me a backbone and confidence to stand firm for other things I believe in. He taught me to not back down when people and the system tried to override my mother’s instinct and try to convince me my gut was wrong. Being a part of his world led me to a breakdown, a change of place to call home and to change my whole outlook on life.

I let go of my dreams for advancing in the workplace so I could concentrate on getting him through school. I let go of what I wanted for us as a family and settled for what worked for us and for him. I slowed way down and learned to smell the flowers and sit in silence and just watch the world go by in peace. I stopped judging others and learned tolerance. I have met so many unique and wonderful people through Mathew and because of him.

This cancer he has is so scary and aggressive that we are counting our blessings he is with us to celebrate this birthday. He is in constant pain but takes pleasure in watching tv with us or sharing some funny videos on his iPad. He loves going out with us and just chatting as we go to his favourite stores. He loves picking out movies for us to watch and music for us to listen to.

He has broadened my horizons from the confines of his mind and his room. Mathew changed how we celebrate Christmas and how certain traditions just aren’t so important in the greater scheme of life. We learned what works for us as a family and that it is fine to be different from everyone else.

When he was younger and had no friends, I used to take his birthday off and he and I would go off and spend the day together if it was a school day. His teachers didn’t like that but I didn’t care. We would go shopping and do lunch and have a great day before celebrating dinner with his Dad and sister (she preferred to stay in school; no skipping for her!).

Later, when he moved on from school and found his friends at Key Industries, he would have a party with some of his closest friends. They would settle in with party food and drink plus whatever take out food Mathew wanted. They would play video games or watch movies. They were all in their element and they were happy.

I am so glad he had that time to call his own. Now he tires easily and is in pain all of the time. This year he and his sister decided to have a family celebration when she comes home at Easter. They miss each other more than they thought they would. I will just be very happy to have us all together for a little while.

Mathew is my first born. He was a beautiful baby and has grown into a beautiful person. The mind of an older child resides in his 5 foot 11 inch frame but for those who get to know him, he changes their world.

I named him Mathew, which means gift from God. At that time I still believed in God, which I do not anymore and haven’t for many years.

Mathew is a gift though. He is a gift to us and he is our beloved son.

I wish for many more years that we can shop and dine and let him enjoy his special day.