A crappy collection

Matthew generates a lot of waste and there is simply nothing I can do to reduce the amount of waste he generates.  He is incontinent and goes through upwards of 7-8 diapers per day, several of them soiled because of his GI issues.  After you toss in syringes, oral swabs, feeding tube supplies, medical wrappings, dressings,  medical gloves, and so on, Matthew alone creates approximately four bags of garbage a week.  During the weeks he is at respite I am often surprised at our lack of garbage at the curb.

We have known for a while that our region was switching to bi-weekly trash collection.  The environmentalist in me applauds the move.  But the special needs parent in me is torn between angry, and just plain frustrated.  There is no doubt that this will create an additional burden in my life, and for the already overextended lives of parents and caregivers like me.

Yes, we will be able to apply for, and obtain, a medical exemption. Yes, there is no doubt we will get it.  Today I sent an email to the region asking about the details of that exemption.  Despite the fact that is initiative is to start in two months they were not able to provide details. None. They were not able to tell me how I might be able to apply for the exemption and whether I will need some type of medical documentation.  They were unable to tell me what that exemption will look like.  Will I be allowed to put out the garbage my son actually generates or will there be limits?  Sorry, this is not an area where I can reduce, reuse, or recycle.

I was helpfully told that the region has determined there is no hazard to storing soiled diapers for up to two weeks.  I get that.  During January and February it isn’t likely to be a big deal.  But what about the fact that storing up to eight trash bags of soiled diapers in July is likely to annoy most people in my neighbourhood due to the odour.  There is no doubt that for most of the summer my house is going to smell unpleasant since trash is stored in the garage.   This part really ticks me off.  One of the great stigmas for people with severe disabilities, not to mention group/nursing homes, is that they can reek of human waste.  We have always been scrupulous about avoiding this, which means Matthew is changed very regularly.  Now this strategy will become a liability.

The City also pointed out that we could, free of charge, drop off clear bags of diapers at the dump free of charge.  Because that is exactly how every overwhelmed caregiver wants to use their extremely limited free time – running bags of soiled diapers to the dump.

To the City this may seem like a small thing.  But what people who are not extreme caregivers don’t get is that these “small” things add up very quickly to become big things.  Add them to the already overwhelming burden of caring for an extremely complex child and you create an unsustainable burden for people who care. It is one more thing added to a list that never seems to shrink.

For the average homeowner in Waterloo bi-weekly trash pick-up is probably not a big deal.  For me it is a very big deal.  If our City were truly compassionate there would be arrangements for a weekly run for people living with significant disabilities.

Coffee. Constipation. Calamity!!!

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Matthew, like most kids with cerebral palsy, struggles with constipation.  Cerebral palsy is a movement disorder and it effects movement(s) of all kinds!  These days we manage Matthew’s GI issues with a finely tuned regimen of water, prune juice, bowel meds, and stool softeners that took a few years of trial and lots of error to sort out.  Remember Matthew can’t talk, and would often tell us we bunged him up by screaming for hours on end.  It sucked for both of us.

Morning care is a tightly packed parade of very specific routines.  There is a lot of care to accomplish in a fairly short period of time.  Every morning Matthew gets a bolus concoction of prune juice, water, and stool softeners syringed directly into his stomach.  That would be the glass to the right.  My coffee, of course, is the glass to the left.  And this morning during the mad dash that is morning care I grabbed the wrong glass.  Fortunately I figured things out fairly quickly.

If not, wouldn’t that have made for an interesting day!

Helicopter parenting and Fruit Loops

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As the parent of a fairly complex medically fragile child I am aware that I have a tendency towards overprotectiveness.  Not only with Matthew, but with my two typically developing children as well.  Over the years I have struggled with balancing my need to keep them safe with their need to test limits and have freedom.  It isn’t always an easy balancing act. I once asked my eldest if my mother bear tendencies bothered him and he admitted that they generally didn’t.  For the minor stuff the boys shared that they would shrug their shoulders, or roll their eyes in the case of my youngest, know I was just “being mom”, and do things anyway.  But for the serious stuff, like the time my eldest was rushed to hospital, my son admitted that he took comfort in knowing that I would be there with him and “had his back”.  I was relieved that my helicoptering hadn’t caused permanent psychological damage!

Early on in my parenting journey I also learned the vital role of self-care and occasional “mommy” time outs.  For the first decade of Matthew’s life I was his primary caregiver and had little in the way of extra supports.  As a result I was often overextended and exhausted, particularly when you consider the fact that I had two additional young children.  As a result my husband would encourage me to enjoy the odd getaway with friends or family.  These time-outs became a lifeline and ensured I survived, perhaps even thrived, during the early pressure cooker years of parenting.

But as the family member who was responsible for the kids and the home I also knew that when I went away things at home would generally fall apart.  The laundry would pile up,  and the house would get cluttered and messy.  My husband would allow far too much screen time, in my opinion, and the kids would stay up past their bedtimes and live on junk food.  And I was usually right.  I would return home to a disorganized house and very happy kids who had bonded with their dad over video games, pizza, and Fruit Loops.  For the record I almost NEVER buy sugary cereals for the kids.  Fruit Loops were reserved for camping trips (a family tradition) and very rare treats.  My kids quickly developed the habit of asking me to go away on mommy trips so they could enjoy the freedom and treats associated with my absence.  I will never forget returning home, wracked with guilt about the fact that I had went away in the first place, to hear my children asking, “when will you go away again mommy, we want Fruit Loops!!!”.

I learned that my family, for short periods, was fine with out me.  Sure, they missed me.  But they had had a great time with their dad doing all those things that mom didn’t allow.  And I learned quickly that letting go of control did not equal catastrophe, but rather ensured self care for me and happy memories for my boys and their dad.    An important lesson to learn before my kids hit their teen years.

My typically developing boys are now 15 and 20.  They are more than capable of making a healthy meal, throwing on the the laundry, and generally taking care of themselves and the home.  But yet last week I returned home from a getaway with some family members and opened the cupboard and saw the above.  It seems some traditions are enduring in my house.   For the record those are frosted Cheerios behind the Fruit Loops!

Holy negativity and writing in grey.

Most days I struggle with the fact that this blog and much of the writing I do might earn me the nickname “Negative Nellie”.  Because I refuse to apply a gloss coat to my experiences of caregiving and write about the chaos in an honest and unfiltered way I (hope to) nuance the prevailing narrative of caregiving of one as a spiritually infused journey. Don’t get me wrong.  I actually agree with most writers that caregiving has been both a spiritually challenging journey and one rich with spiritual growth.  It has also been a journey that has sucked a whole lot of the time.   Full time caring is very hard work and this journey of mine that has come with growth and learning has also come at the cost of some pretty profound suffering.  A price that in my opinion has usually been too steep to justify the results.  As a result I often worry that my honest portrayal of caregiving paints me as an overly negative person, something I don’t think is true.

So I found it interesting that  yesterday in an online discussion about medical malpractice I was accused of being a holy Polyanna because I didn’t conform to the negativity of the online environment.  And of course being the person I am I had to go off and unpack that accusation and try to sort out what parts of it might be true.  (As an aside, being a true Canadian I apologized to the poster for any comments that might have come across as holy or judgemental).  In the end I think the key problem with my post was that I was trying to write from a moderate, shades of grey, position rather than conform to a prescribed black/white narrative.

To give some context I was responding to a post in an online discussion about medical malpractice. A poster had reminded the group that not all physicians were bad and that witch-hunts were not particular productive.  I chimed in and affirmed the post and noted that I had moved past my anger and hoped to nurture a more constructive conversation about how malpractice is addressed.  I discovered quickly that on this particular site this was not a popular attitude and I was called out for being “holy” because posters felt that my lack of anger, and unwillingness to see the issues as black/white/right/wrong minimized others’ anger. I went on to learn that this site was a place were angry people went to vent their anger with other angry people.  Since I no longer shared that blind, all-consuming rage my more moderate narrative was immediately dismissed and labeled as suspect, even blasphemous.
In the end I left both the site and the discussion.  People need a safe place to express and process their anger and I respect that.  I was angry for a very long time as well and might have appreciated a place where I might have shared my anger honestly.  However, I worry that such a toxic vortex of anger achieves nothing constructive but only feeds upon itself.  I didn’t want to get sucked into that vortex and I didn’t want to be labeled as inappropriate because I  don’t share a toxic rage directed at the “Establishment”.  For me, this site would not be considered “safe”.  What I think was truly unfortunate, though,  is that some of the posts about the “Medical Establishment” were important points but appeared to get lost in the anger and rage.

In the end the whole experienced confirmed my belief that dissenting narratives matter, a whole lot, but are incredibly hard to share since they don’t nurture the prevailing storyline.  It is difficult to tell my story of caregiving because I don’t conform to the expected quest narrative of spiritual triumph over adversity.  Similarly it was impossible to share that I was  NOT angry at a physician/the medical establishment in this particular malpractice support community because the accepted community norm was that medicine and physicians were pervasively bad.  Things were black and white.

But yet I believe that by continuing to share our stories, particularly those that don’t conform to the expected story line, we are constantly reminded that there is diversity in our experiences and it is in that diversity that we find answers, hope, and strength.  I have also learned that being someone who lives and writes about the shades of grey (not Fifty Shades!) is really, really hard work and might often mean that my points get lost in a world that seems to prefer things that are black and white.

Small miracles??

The United Church Observer arrived in my mail yesterday and I spent the early part of my evening perusing the magazine while listening to Matthew’s music therapist belt out If You’re Happy And You Know It.

 

The final page of the magazine is always a brief vignette; a spirit story. This month’s narrative tells the story of a Christmas vigil at the hospital bedside of a beloved family member. We know by the end of the second sentence that the situation is palliative. It took me a few minutes to understand that the beloved family member is a child with special needs. I don’t know why.  The fact that the oxygen tube was propped upon a teddy bear should have given it away. I have done that with Matthew.  By the end of the article I was in tears.

 

It is a short, yet profoundly moving, story of a family who spends Christmas Day sitting with their little girl in hospital. The family tells of eating turkey and samosas in a hospital room at Sick Kid’s in Toronto. Presents are opened and one young family member proceeds to play with her little ponies, marching them up and down the quilt on the bed beside the little girl.

 

As I read the article I was amazed at the family’s willingness to share such a profoundly intimate moment. It is a situation that I live in fear of.  When one parents a medically fragile child one hears often that such a situation is not only possible, but indeed expected.  You just don’t know when it will happen.

 

But then one sentence jumped off the page and the article seemed to speak directly to me. The author tells of the family pulling open Christmas crackers and finding a collection of yellow Christmas hats. Coincidentally yellow is the colour worn to honour microcephaly, the little girl’s condition. The author describes the moment as, “a funny Christmas miracle. Strange that there can be some miracles but not others”.

 

Strange that there can be some miracles but not others. I was so grateful to read that sentence. It was refreshing to hear those words from someone, particularly someone in the church, and someone you “gets it”. Sometimes our prayers are not answered.  Sometimes the miracles we desperately want are not part of the story.  Sometimes we have to find our own subtle miracles amid a journey of overwhelming pain. Sometimes the God you are told, and believe, is ubiquitiously present seems remarkable absent.

 

For me this seemingly silent God became one of the biggest sticking points during my existential crisis of faith. People talked, often, about prayer and about miracles. I was assured that if I prayed hard enough that God would answer. Things would be okay. Baloney I thought.  Sometimes you pray and God is silent. Sometimes you pray and it still hurts.

 

Stories shared amid my faith community often featured happy endings. God’s blessings and faith triumphed. Prayers were answered.  Peace was found.  I struggled to process these messages amid my own journey that did not seem to correspond to the prescribed narrative structure.  Happy endings, at least for long stretches of time, didn’t feature in our story.  Matthew did not surprise health professionals. In fact his disabilities and medical issues were, and are, more complex than originally predicted. He lived for years with significant suffering before we successfully addressed his chronic pain. It was awful and there were many moments I genuinely wondered if his death might come as a blessing.   As the years progressed and my world shrank thanks to ongoing caregiving responsibilities I found I could no longer go to church and listen to congregants talk about God answering prayer. In our story God seemed particularly silent and I became annoyed at theodicies that focused on defending God, particularly amid the indefensible: the profound suffering of a child who could not understand or influence their suffering.

 

Reading this article was therapeutic.   Sometimes the miracles we need are not on offer. Sometimes we have to find peace in unexpected places – like a paper yellow hat.  And sometimes there is only sadness and The Sacred is with us in the sadness.

 

The little girl’s name was Daisy May and she died a week after Christmas 2016.  I felt it was important that we know her name.  My gratitude to her family for sharing their story.  My condolences as well.

 

Just DON’T!!!

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Today I was running errands early in the morning and I pulled into a local parking lot.  Since the stores had only recently opened the parking area was relatively empty and I scored a parking spot second from the store’s front door.  The closest parking spot was of course a “blue spot” for people with disabilities.

Most people who know me are aware, that as a parent of a child who uses a wheelchair, I have a great, big, enormous chip on my shoulder when it comes to inappropriate use of accessible parking spots.  Hey.  At least I own it!

Today, as I walked into the store, I noticed that the car in the accessible parking spot did not have the appropriate blue tag.  GRRRRRR!  That makes me really, really cranky. To really cap off my annoyance the car in question was a high end, rare, luxury  vehicle with a vanity plate.  The message seemed to be- this is a really valuable car and therefore it is worthy of this parking spot close to the windows where I can see it and make sure it remains untouched.  For the record dear driver, your car is not and never will be, worth more than my son’s quality of life or the QOL of anyone else who lives with a mobility impairment. If you’re that worried about your hunk of metal park it at the far end of the empty parking lot and walk.  Because, you know, you are able to do so.

 

So today I join the rant of many people/caregivers who live with disability and require the use of accessible parking spots.

 

If you do not have the appropriate blue tag and the person with the disability is not a passenger in the car  you may not, not ever, park in a blue spot.  LIKE NEVER.  

 

Yes, I know you think you will only be a minute.  Yes, I understand you are in a really big rush, or the parking lot might be really, really full.  It doesn’t matter.  It doesn’t matter that you aren’t feeling well or you twisted your ankle.  It doesn’t matter that your mother/father/brother/sister or so on has the appropriate wheelchair tag you cannot use the parking spot if they’re not in the car, or you’re not picking them up.  It doesn’t matter that you are corralling  lots of small children and pushing a stroller, you still can’t use the parking spot if you don’t have the requisite blue tag.  Sorry.  And no, it doesn’t matter if you drive a really, really nice car and you have a need to see your car at all times because it means so much to you and is worth such a great deal of money.  You still don’t get to use the blue spot if you don’t have the “blue wheelchair tag”.

 

Accessible parking spots are for people with mobility impairments who have the appropriate parking tag for people with disabilities.  FULL STOP!

 

Okay.  Rant over.