Please take a moment...

I have been working on a new blog post, and it'll come in time - but this is more important.  A dear friend's husband, Michael, was struck yesterday while on his bicycle... he survived the accident, but is critically injured and in intensive care.
  
Heather and their 3 children are reeling - understandably.  


Please pray for Michael, and if you can, contribute to this fund I set up for them.  Every little bit will help - let's try to make "financial issues" a little lower on the list of worries right now - they have enough on their plates.


Thank you.

Call it what you want...

After all, what you call it is not a reflection on us, or our choices, or our parenting style.


It is a reflection on you.


Supportive.


Judgmental.


Patient.


Misguided.


I can call it whatever I want... but I don't know what to call it either.


So I'll just let it name itself.


Hop into my Tardis, let's time travel for a bit... 


4 years ago "today" (the Tuesday after Easter weekend) our family was reeling. Brigid was in the hospital - not tolerating her feeds and everything that had been tried was coming up empty. Emergency surgery to add a second g-tube to try and help her tolerate gut feeds was done only 5 days earlier and already deemed unsuccessful. In addition to these struggles, we had just learned of the death of Dale's birth mother in an accident - a woman we had sadly never gotten the chance to meet. 


At this very moment, Brigid was in the operating room having her first central line placed so that she could be started on TPN. A surgeon with the powers of prognostication had come to the conclusion that this was not a problem that was going to resolve, and had cancelled the PICC (temporary line) placement in favour of inserting a port (a much more permanent solution). Brigid came home from the hospital a different child.

Fast forward a year - massive weight loss, developmental standstill, gut problems worsening quickly, and still no concrete diagnosis...

Brigid spent a total of 3 months in the hospital in 2 stretches between January and May 2009, with a break in the middle for her Wish Trip. The Tuesday after Easter, Brigid was admitted to the hospital for what had been sold to us as her only option (that we later learned was a topic of MUCH debate among her docs, and the more experienced members of her team did not recommend it -they actually advised against it - unfortunately, due to professional courtesy, they did not share this opinion until AFTER the surgery was performed). Sadly, but in retrospect not unexpectedly, the surgery didn't have the expected outcome, and on May 11th 2009, Brigid finally came home... TPN dependent.

In 2010, she spent Easter in the hospital with a sepsis episode - her central line and TPN make these frighteningly common - since becoming TPN dependent, Brigid has had more than a dozen blood infections... each having the real potential to take her from us.

Easter 2011 was spent in hospital in a very weakened state - recovering from bone marrow suppression and autoimmune mediated thrombocytopenia triggered by the influenza b virus - against which she had been immunized.

And... still she remains without a primary diagnosis. We know she has mitochondrial encephalomyopathy, and Fanconi syndrome, stroke, cerebral palsy, epileptic encephalopathy, intestinal failure, NK cell deficiency, birth defects, mastocytosis and so on and so on... but there is nothing that ties it all together.

Since her first gut surgery in 2007 (frankly, since her birth, now that I look back with a map of this journey in my mind), every time we have tried to artificially stimulate her gut to accept more feeds, we have fallen further behind - so, finally in May of 2010, at the recommendation of one of the docs who knew her well (and after 5 blood infections between November and May, 4 of which came from bacteria that live normally in the gut) we stopped giving her formula through her tubes all together and she got all her nutrition from her TPN.

This decision, recommended and supported by multiple members of her treatment team, caused one of her docs to accuse us of "giving up". Despite our desire to step back, keep things at status quo (she was finally growing and developing in her own way) and let her body do what it was ready to do, this doc encouraged (pushed) us to pursue repetitive invasive diagnostics at sites far afield. First Montreal, then Columbus OH, then Denver CO... there was always another centre with another team that should see Brigid, repeat the scores of painful and invasive tests this beautiful little person had already  been subjected to and add their own all with the goal of "figure this out".  


She is not a puzzle to be solved, but a child to be nurtured, challenged and loved.  Despite his regular and repeated suggestions that we should travel with Brigid, we always considered it very carefully, but could never reconcile ourselves to the idea that this was about Brigid the child, not Brigid the disease.  

It wasn't dismissed out of hand - I asked others' opinions. One doc who drives me nuts sometimes, but whose opinion I respect immensely said this... "IF there is a name for what she has, that is probably all it is. A name. If there was a treatment, we likely would have found it by now. Let's leave her alone - deal with things after they present themselves, don't go looking for trouble. Let her write her own story."

"LET HER WRITE HER OWN STORY"

We hold those words as our strength, as our truth - when it was recommended that we strongly consider a DNR in a situation of gradual decline, those were the words that helped us guide our decision. When our family was referred to Hospice, those words rang through my head.

When the doc who was pushing us to seek answers where answers may not exist, to put aside the "child" for the sake of a "diagnosis" began to throw around the phrase "Vulnerable Child Syndrome" we discussed it with those who are most closely involved in Brigid's care, who frankly said it was poppycock and continued to allow Brigid to add chapters to her story.

So we waited - we dealt with issues as they arose, but did not seek them out. Still, we discovered immunology, kidney, blood/bone marrow and worsening neurological issues... but Brigid bloomed. She was writing her own story.

And last night... effectively another Tuesday after Easter, the story she is writing took quite a turn. For the first time in more than half her life, we were directed to reduce the amount of TPN she receives, not because she is getting too much, not because it is further harming her liver (although it is), but because she is getting 20% of her daily calories via another route.

Not through her IV line.

Not through any of the artificially created surgical openings in her body.

Through the opening she was born with for this very purpose...

Through the grace of God and our gift to her of patience... she is EATING!

What the future holds is anyone's guess, and you can't peek ahead to see for yourself...

Brigid is still writing her own story.

Blue Roses

Due to some unforeseen circumstances, I had the opportunity to spend yesterday in the company of a bouquet of the most beautiful blue roses I have ever seen.

As a staggering coincidence, I received this email this morning - now, I know it is making its rounds, and sadly, I don't know its author, but please take a moment and read it...

A Blue Rose

Having four visiting family members, my wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper towels, trash bags, detergent and Clorox. So off I went.

I scurried around the store, gathered up my goodies and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."

It was obvious now, he was mentally challenged and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"

"My name is Denny and I'm shopping with my mother," he responded proudly.

"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Steve."

"Steve, like Stevarino?" he asked. "Yes," I answered. "How old are you Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle.

"You're fifteen-years-old Denny; now be a good boy and let the man pass by."

I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement, because he was the centre of someone's attention. He then abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him.

I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit. I told her that there are plenty of red, yellow, and pink roses in God's Garden; however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked, "Who are you?"

Without thinking I said, "Oh, I'm probably just a dandelion, but I sure love living in God's garden."

She reached out, squeezed my hand and said, "God bless you!" and then I had tears in my eyes.

May I suggest, the next time you see a BLUE ROSE,whichever differences that person may have, don't turn your head and walk off. Take the time to smile and say Hello. Why? Because, by the grace of GOD, this mother or father could be you. This could be your child, grandchild, niece, nephew or any other family member.What a difference a moment can mean to that person or their family.

From an old dandelion! Live simply. Love generously. Care deeply. Speak kindly. Leave the rest to the powers that be.

This perfectly describes the children I hung out with yesterday. In a school where being "different" is the norm, these children, with widely varying levels of physical ability, are all contributors. I sat in a room with 7 children, who can speak verbally, or use speech output devices, who can get around on their own, use gait trainers, walkers, manual or electric wheelchairs. I met the most amazing little girl, who even at her young age, despite having limited control over her body, has learned to control her power wheelchair with head controls. I met kids who are more savvy with technology than many adults. I met kids who have taught the adults how they communicate. This is a classroom where the kids are not just "doing time" - they are learning, and developing, and like the blue roses they are... they are blooming.

At lunch time, we joined the rest of the children in the school gym. I had a complete conversation with a little guy who is non verbal, sat with children who can feed themselves, or need to be fed... those who eat orally, or who use their tubes... and a special little girl who doesn't eat at all. I met Brigid's boyfriend, and her other boyfriend... and her other other boyfriend (yikes!!).

During the day, the children read and were read to, they learned science, social studies, math and language, they had floor play time, did individual work, group work and some had therapy withdrawal sessions. While it is very different, it is also very much like a regular primary classroom, and the ultimate goal for all of these children is to find and implement the tools that will allow them to unlock the immense potential they all hold.

None of this would be even remotely possible if not for the amazing team that works with them. I am in awe of the classroom teacher and the aide - I watched them navigate and program step by step communicators, speech output devices, troubleshoot computers, software and inputs, manage walkers, gait trainers, manual and power chairs. And still, classwork was done, lessons were taught, and the children were actively engaged in learning.

It would be insanely easy to plunk these kids in a chair and leave them there for the duration of the school day, but this school is not about what is "easy", it is about what is "right". I watched most of the children in the class in bench seating, on angled floor long sitters (custom made by the team in house), in their wheelchairs, gait trainers, walkers, on the floor or on beanbags for floor play. Each of them transitioned from one support to another repeatedly - one class member came into the classroom with her posterior walker, switched to a straddle bench for opening exercises, then to her power chair for the next activity. From there, she went into task seating, then back to her power chair for lunch, after lunch was free play on the floor on a mat, then into an angled long leg sitter for science, back to her manual chair for social studies, and her walker out to the door at the end of the day. This is normal for all of the children in the school - and with 8 kids in Brigid's class, you can well imagine how hard all of the staffers in the school work.

They don't do it because they want to get rich - that is for sure. They do it because they can see the beauty in a blue rose. They look past the limitations, they look into the eyes of these children and see THEM. These children are not invisible, they are worth the work. They are bright, they are funny, they are tough... but above all, they are kids.

Say what you want about self contained classes or schools, but for some, especially those who will clearly thrive with the support that a place like this can provide, they are a Godsend.

... and we are blessed that they were sent our way.

"MomGyver" strikes again

Well, it was bound to happen... after close to 4 1/2 years of needing a pump of one sort or another, Brigid has had damaged one in a little accident. Not to worry, though, the pump was damaged... not the Brigid. I have always been looking for the "right" pack for Brigid to carry her pump(s) in, and thought we had really hit the jackpot with the $23.99 2L New Balance hydration pack we found at Costco.

It was perfect, too... until we found its fatal flaw - the pump and bag were well protected from outside harm, but not from each other.

This little bit of plastic, the "wings" at the base of the pump set spike for the bag, is a little harder and pointier than we realized.

And, since it is harder and pointier than we realized, it did this. Oops.

Since Brigid's infusion pharmacy ROCKS, they are not freaking out about this (which is good, because I was...), but I was determined to make sure that, now that we had identified a weakness in the pack (or, at least how we are using it), I needed to figure out how to avoid doing it again. Brigid is not the steadiest kid in the world, and she does fall - maybe more than her fair share - so it is probably a good idea that we don't get into the habit of ruining multi-thousand dollar pumps. Time to channel my inner MomGyver.

Feel free to duplicate this for personal use, but not for financial gain - I retain the rights to this design for commercial use.

I started with this New Balance pack from Costco - it came with a 2L water reservoir - but you can likely do this with any hydration pack - just choose one that holds a reservoir of the same size or larger than the bag you need to carry.

It is a pretty standard pack - reservoir in the back in a fully padded compartment, other compartments to carry your doodads and whatnots in the front. This design doesn't alter the pack much at all - all you need to add is a wide strip of heavy duty velcro on the inside of the reservoir compartment opposite where your bag will hang - which means you can still use it for its intended purpose, and you are not left with a useless reservoir when you purchase the bag.

This design will work for just about any pump. It is made with neoprene, nylon webbing, velcro and the most important part... a piece of something rigid the size of the face of the pump. I used melamine fiberboard - very stiff without excess thickness or weight.

Here is the inside of the pump holder - it wraps around the pump and holds it from all sides, but allows the lines to run without being bent or rerouted.

and the back of the holder while opened... note the hook velcro to match up with the loop already sewn into the bag.

This is the Bodyguard 323 pump in common use in community infusion therapies...

... and enclosed behind the rigid face plate of the case...

It will also work perfectly well with the Bodyguard 121, a dual-channel pump (and the inspiration for the case in the first place).

I love this bag - the line connecting to Brigid's IV can be run out the bottom of the bag and up the back of her shirt...

Out the side of the pack through the zipper...

Or, my personal favourite, out the top, and down her collar - which leaves only about 3" of line exposed and reduces the risk of snags to almost nil...

Because of the position of the pump now, it also prevents the pump coming into contact with the wings on the spike at all...

Because Brigid carries her backpack all waking hours right now (we hope that'll change, but all in good time) it is good that she is able to carry her emergency supplies as well. She carries her epi, glucagon, and all their related doodads in the front pocket...

... and a dressing kit in the main compartment.

Even with all this on board, the pack is only this thick...

... which allows her to forget about the "packpack" and be a kid. After all, isn't that what it is all about?

Necessity IS the mother of invention, right?

Time for Thanks.

Wow! Time flies when you are not "on the inside".

We have been blessed with a very good stretch for Brigid. Not long after she returned to school, Brigid developed another bad sepsis episode, but, in true Brigid form, she came out of it exceptionally well... and once again we were reminded not only how quickly she can get sick (she went from perfectly fine at noon to very ill by 7pm) but how remarkably she recovers. Not only did she recover from this, but she is doing better and definitely more stable than we have seen her in AGES.

Apparently, it is just not her time.

What it is time for, however, is thanks.

Thanks for Brigid, for our family, our extended family, and the friends and strangers who have become friends throughout this journey. Thanks for the prayers and good wishes, the generosity and the sounding boards as I am trying to process where we all are on the journey now.

Thanks for the "gifts" of luck and happenstance, and to the people whose caring and kindness have made it possible for us to respond to opportunities as they arise (especially you, Joy).

Thanks for the opportunity to share with others and make new friends in the process.

Thanks that Brigid seems to be getting better. Not just "less worse", but better. She has lost a bit of the weight she was gaining, and is more mobile and active than she has been in ages. She is playing well and sleeping well, generally happy and the "issues" seem to be overshadowed by the good times. She is learning to read, learning to spell, thriving in school and making friends.

Reggie is doing well too - playing guitar, enjoying karate, hanging out with the boys in the neighbourhood and coming in to his own as a young man.

We are in a good place in our lives right now - a stable place. This is the kind of "good" that will be held tight if things go sideways again.

Thanks for coming along for the ride.

Christmas... from another angle.

For some families with medically complex/fragile children, it carries different sentiments - different emotions.

When Joe or Jane Average think Christmas, their thoughts may turn to the Christian image of Christmas - Christmas Eve services, the birth of the Christ child, time with extended family on Christmas Day, gifts, prayers, renewal. Perhaps they lean more to the "modern, commercial" Christmas - gifts, maybe too many, Santa, Rudolph and Frosty, huge meals, weight gain, maybe a "beverage" or two. Maybe they don't celebrate Christmas at all, but celebrate another festival - Hanukkah, Kwanzaa, Yule, Winter Solstice, Diwali... whatever is specific to their heritage, this time of year everyone has a celebration... it's party time!

However, for a very small percentage, life goes on... celebrations may occur around them, but there are no days off (and in almost every case, more work instead of less, since support people are taking their own time off, schools and programs shut down for the holidays and the family with the MC/F child bears the 24 hour a day responsibilities solo).

The "festive season" may be spent in the hospital sitting at a child's bedside, or at home trying to fit visiting into the full schedule that must take precedence at all times. These families can be very isolated, or conversely, take on far more than they can handle in the guise of "it is the holidays and this is the way it should be". It is tough on us.

Rarely is our children's mortality more "in your face" than at times like these - celebrations that mark the passage of time.

Brigid, for example, has a "Home Pronouncement Plan" - her medical team feels that her time with us is drawing to a close - and it is our hope that she passes in the place she is most comfortable. The reality that this could be her last Christmas is harsh, but not impossible. She could prove us all far wrong - but we cannot ignore the extent of her decline.

Most families are making menus and schedules for the holidays. As part of Brigid's HPP, because it is required, we are making funeral plans.

She is not the only child in this situation, not by a long shot. Each of these children have families - parents, siblings - and there is no one untouched by it. The alarms still beep, the pumps still run, meds must be administered, diapers changed, therapy schedules followed. Oddly enough - these things don't care what the date or time is.

You can't fix the "broken" things with these families. While I do not know a single family with a MC/F child who doesn't struggle to get appropriate equipment and supplies for their children - who wouldn't benefit from a large financial winfall to have the chance to forget about the dollar signs for a while, this time of year is about more than just that. Only very specific items given as gifts will really help... but there is one thing that costs very little but means more than anything to our families.

Give of your time.

Come help clean (or if you can afford it, hire a cleaning service for a visit). Cook a meal or several - help the family fill the freezer so that when a healthy meal is needed, it is readily available. Offer to become familiar with the MC/F child's care, so that you can spend some time with them while mom has a nap, or reads a book, or soaks in the tub.

Take a grocery list and go do some shopping for Mom & Dad, so they don't have to try and handle doing it themselves.

Or, maybe MORE importantly, spend some time with the siblings. Let them know that they are the most important person in the world to you for a while. Play a board game, rent a movie, go to the park, fly a kite, get outside. The parents WANT to do this, know this well, but siblings get the short straw, almost every time. There are only so many hours in the day.

And cut the parents some slack if we don't seem like the most chipper folks you have ever met. We are carrying a bit of weight on our shoulders right now.

We always are.

Merry Christmas from us to you...

Holding patterns...

If you are a friend of mine on Facebook, then you know that Brigid has been struggling recently.

I was asked the other day where things were - how she was doing medically, how I was coping, how the guys were doing at home. My response was brief, and I didn't put a lot of thought into it, but I said we were in a "holding pattern". What I meant at the time was that, while there was some stuff going on, thankfully nothing was critical any more, but she was not ready (nor was I ready for her) to come home.

However, for whatever reason, those 2 words - holding pattern - have been rattling around in my head since that conversation.

When you are the parent of a medically fragile child, you are on a journey. Just for giggles, let's say, instead of travelling through the mountains (I've done that one already, and yeah... I know it is one or the other, but just humour me) let's look at the journey as air travel.

Our aircraft is being built prior to discovering the medically fragile nature of our child. It can be during pregnancy, or at birth, or any time after that, but once we realize that we have a child who is medically fragile, the airplane takes off.

The thing is - this airplane can only land once. It lands at the end of the journey. No stopovers, no layovers, and definitely no changing planes.

As parents, we are the pilots of this plane, but we don't have control over the flight plan... we may be told to head to Brazil, then at the last minute, when we have almost arrived, get the order to hang a left and head to Zaire. When we are en route, orders change again, and off we go to Lichtenstein.

From time to time, we do arrive at the place we set out for, but there is no room on the runway. It is too busy, or snowing, or there is volcanic ash everywhere. That is when we go into a holding pattern.

There is nothing really to do where we are, but landing is not on the boards, and there is nowhere else to go...

This is the time when we keep on keepin' on. This is where we sit in the hospital - well enough that there aren't medical staff hovering, but not so well that we can head home. At home, it is the settling in period - cementing new routines, finding and existing with new normals.

However... no plane can fly without fuel. As parents of medically fragile children, we become adept at mid-air refuelling, since the plane only lands once it is the only kind of refuelling we can do.

The fuel we need is varied - we need fuel for the machine. Healthy food, eaten while sitting down, not vending machine fare and huge amounts of caffeine consumed on the fly. We need fuel for the spirit. Time with our partners, with friends, time alone. Hot showers, soaks in a tub. Time pursuing hobbies, learning things totally unrelated to the medical needs our lives revolve around, time exercising the body while turning off the mind. We need fuel for the soul. Spirituality exists in many flavours, and whatever feels right to you is right for you.

Sometimes, when the pilot seems too weary, when he or she needs to refuel personal tanks, someone else needs to fly the plane. The pilot may be reluctant to hand over the controls, OR the pilot may be begging for someone else to fly... but recognize that there MUST be a copilot - a stand-in, and not just for the primary caregiver, but for BOTH parents.

We MUST refuel - you see, if the pilot(s) can no longer fly the plane, it WILL crash. Or clip a wing, or blow out an engine, and mid-air repairs are very difficult to do, and impossible to do perfectly.

This plane can only land once, and under crisis conditions, it will not be a good landing at all... While eventually a planned landing may seem like a kind and gentle homecoming, none of us, even when we DO know it is coming, are in a rush to finally touch down.

I wish safe journeys to you all...