I am routinely surprised at how fast time just slips away when I'm not paying attention - It's been waay too long for an update, and there is indeed much to update.

I'm not really sure where to start, so I'll kick things off with kid-news. The boys are both doing very well - they are wrapping up school and are easily slipping into 'summer-mode' as the days warm up. Brandon has made friends with a little girl across the 'dandelion field' who routinely runs through the field that separates her back yard from my parent's. I can't tell you how it feels as mom to watch a little girl run across a field, just to come to the back door and ask if Brandon can come out and play. So many times I have worried and wondered how other kids will treat him, and whether he will be blessed with the same awesome freedom of imaginary play in the fields around my own home growing up... So much was learned and shared and so many memories were made by the completely natural acceptance that kids who live near one another fall into. I have found myself awake at night worrying about whether Brandon would have that joy, freedom and opportunity for growth that most other kids enjoy without a second thought. Last Sunday, disguised as a little blond haired, blue eyed girl who was so happy to find a friend across the field - one that was her age, and liked the same things and played the same games - and her one and only response to the fact that Brandon does not talk - "oh good! I know some sign language from school!"... and off they went. She has come to my mothers back door countless times in the past weeks, each time simply asking if Brandon can come out and play. And he can. And does. And my heart completely melts. And I am, once again, amazed at the complete acceptance, and the total dismissal of any of Brandon's perceived 'limits'. To her, he is just a boy across the field who likes to pick flowers and play make believe.

That just might be the single greatest gift I've been given in the past months. The reassurance not only in Brandon's ability to make and keep friends - but in the ability of the children around us to simply dismiss all the things we parents have worried and fretted over.

Throw in the little boy next door who has befriended both boys (mostly Tyler though as they are the same age) and I have had a lovely time watching all the 'normal' going on in my parent's back yard. Summer is shaping up to be lovely.

So that's the boys - both great - loving living at Ama and Grandpa's house, being spoiled by all the various caregivers that wander in and out of our days... and amazingly, resiliently, taking every bump, turn and hurdle in stride. And finding quiet moments to sneak in some 'mom' time wherever possible - be it stories, a movie together, a computer game together or simply googling how to grow peanuts or how many recipes we can find that include 'crickets' of any form...

On to the less 'fun' stuff. As you have likely gathered, we are living at my parent's place for the time being - I am useless without the nearly constant assistance from various family members, cousins, neighbours, friends, and other awesome kind-hearted people in our lives. Living at my parents means we are closer to the rest of my family (our home is about 15 minutes away from my parents home - and everyone in our 'support network' lives near my parents rather than us), and it means my parents are able to help with the day-to-day minutia that would leave me unable to function by mid-afternoon.

I am profoundly dependant on those around me - it is possibly the most difficult part of all of this. I have been so fiercely independent through even the most challenging stretches of time - but now I am done. I need help with everything. The kids care is heavily covered by family - feeding them, keeping on top of Brandon's meds, tube feeds, baths, school, etc - I can literally do nearly none of it.

I struggle daily with the reality that, even if I truly wanted to (which i do on many levels and absolutely don't on others), I could not move my family back home at this point. We've accepted that at this stage in the game (And we've learned through trials) I am unable to care for myself, never mind my children. I have no strength to do anything beyond park myself on the couch or lazyboy and read/carve wood/write/watch TV/ putter online (and online puttering has dropped drastically - the desire to draw comfort from those in similar predicaments has been overrun with the 'reality' many of those folks face. Realities sadly worse than our own - which is pretty dismal at times.

So yes - most of my day is spent on a couch, when I am not shuttling back and forth to the ER for more IV antibiotics (courtesy of an ill-timed kidney-infection-wanna-be), or to the city for chemo, appointments, procedures or any other exciting soiree at a random hospital.

The lack of strength, and inability to care for myself and my kids has been a hard pill to swallow.

The long term implications scare me.

We have alot of hope that once the chemo kicks in, I may well get back to a functional level - but we are also being logical and trying to lay some groundwork for long-term implications if things do not go as we hope they will.

Basically we will have to overhaul our life.... I cannot be alone for any stretch, with or without kids. I cannot drive (and will not in the forseeable future). I cannot clean or cook. I cannot tidy the kid's rooms/messes. I am, for all intents and purposes, more dependant than my kids in many ways. For anyone who knows me, they know THAT is the toughest pill of all for me.

Unfortunately this makes moving home a challenging goal.

In many ways I am very eager to be at home, around my things, and books, and just 'home' with my family. I miss morning coffee on the deck and kiddy pools on the grass, and hours of 'play' outdoors for the boys. I want to cook for my family, and get the boys off to school in the morning. I want to sit on my couch in the afternoon when the boys are both at school and Dave is working and just revel in the alone/quiet time to read... instead the idea of that scenario fills me with panic.

The sepsis infection a month ago (April?? I can't remember now - we've lived with my parents ever since, first out of convenience, then necessity, now - fear?) scared the crap out of me. The morning I was at my worst I quite literally could not even give myself the advil and I'm fairly sure if Dave was not there things would have gone very very badly. That stole my confidence in being independant.

Thankfully my parent's place is and always has been 'home' for me and the kids (and Dave will reluctantly agree as well). And more thankfully my parents are awesome - as are my aunts, uncles, cousins and friends who have helped to ensure (and continue to) that I am not alone... They have made my newfound dependance on others a bit easier to adjust to, and the opportunity to get closer to so many family members and friends has been an unexpected blessing.

Because of this circle of family, I don't find myself alone, either at 'home' (my parents - which they have completely made 'home' for me and Dave and the boys) or at hospitals - Chemo days are filled with family (and this week board games with my cousin Becca!) - appt's are chances to catch up with aunts or uncles, and scary procedures that require I stay in the city overnight are a chance to stay with my brother and his family and catch up...

I have leaned heavily on my family these past months, and they have not failed to stand strong.

My hope is that with time I can lean less and less - but for now, I find comfort in their company and assistance... and I am continually blessed with this chance to truly get to see how tightly knit we really are. You are all amazing, and you all know who you are I'm sure.

It is 5am and I have yet to get any sleep - between the chemo side effects and Brandon's newfound fever (cold) I have pretty much dozed in and out tonight - but I"m not concerned because tommorrow (today? - in a few hours?) I know I still have lots of family to lean on to help... and a day with my boys on the couch lined up sounds just about right.

I'll try to update more - and hopefully more coherently - sleep deprivation and general chemo-crap feeling isn't making the words come easily this morning.

good night.



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