chansen's picture

chansen

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Writing from Sick Kids

I'm writing in the middle of the night from a waiting room computer from Sick Kids Hospital in downtown Toronto.  My 2-year-old son vomited twice tonight, and became unresponsive and almost stopped breathing.  My wife was with him, and we made the quick decision to call 911 and started mouth-to-mouth.

 

He was rushed to a local hospital, stabilized, and eventually he was transferred here to Sick Kids.

 

I'm clearly not writing for your prayers, and in fact hesitated writing about this at all.  But I have time to kill and I can't sleep.

 

I just wanted to write that there are very real people, all around us, doing extraordinary work every day and night, 24/7.  I have to go soon to check if we can see our son, but suffice to say, the fire department, EMS, and everyone at the hospitals have been fantastic.  EMS, especially, was super-quick on site.

 

My son, as the initial drugs were wearing off, was moving and starting to open his eyes, if not focus.  We are not as scared as we once were, but we need answers - answers doctors do not yet have.  We don't know what caused this, but this has been the most terrifying night of my life.

 

We have guardian angels.  They work as 911 operators and EMS crews and in hospital emergency rooms, and right here at Sick Kids.

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LBmuskoka's picture

LBmuskoka

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Chansen, the strength that Carter has will help him and you in the days to come:   Once an athlete always an athlete.

 

I know that no two situations are the same but this morning I read a remarkable blog piece (and its companion, click save my spoons below), I share with hope ...

 

A Few Awesome Things About Being Disabled

 

I can cut through the chaff pretty quickly with gear: there are some people that were chatty and friendly yesterday who will pretend they don’t see me when I’m am using a cane or a chair. Awesome! Now I know I can save my spoons -- I don’t need to spend tons of energy on that person. That’s really useful information! I have a limited amount of strength and energy, so it’s a genuine gift to be able to marshall those resources and save my attention for all of the wonderful, amazing people who are supportive, funny and kind and who see me, the whole me: disabled Sarah, who some days comes with a cane or a chair or just shoes.

     Sarah Eyre, IBID

busymom's picture

busymom

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DKS, respectfully I would like to support Chansen's desire to call this a "community".  We are a community.  Not everyone here shares the same faith.  Not everyone here has faith in God.  It is not a pre-requisite to being a member of this community.  We are inclusive.  We welcome all.   Chansen is a valued and important member of this community.  His family is struggling and we are here to support him.

Our focus in this thread is Carter, and the mommy and daddy that love him.  

I'm sending lots of thoughts their way today!

 

 

DKS's picture

DKS

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busymom wrote:

DKS, respectfully I would like to support Chansen's desire to call this a "community".  We are a community.  Not everyone here shares the same faith.  Not everyone here has faith in God.  It is not a pre-requisite to being a member of this community.  We are inclusive.  We welcome all.   Chansen is a valued and important member of this community.  His family is struggling and we are here to support him.

Our focus in this thread is Carter, and the mommy and daddy that love him.  

I'm sending lots of thoughts their way today!

 

 

 

Did I say anything about what faith people had? I most certainly did not. This is a community of people of faith. Not all are Christian. That is a reasonable presumption. Please don't infer something I did not say. But the values reflected here are values which are found in many comunities of faith.  And no one owns a thread. That is one value of communities of faith, as well.

busymom's picture

busymom

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I stand corrected.  Thank you for clarifying.

busymom's picture

busymom

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DKS, sorry also to hear about your daughter.  Hope she is feeling better today.

Dcn. Jae's picture

Dcn. Jae

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DKS wrote:

And yes, I've been in your place. I was at the ER last night with my daughter who was having a psuedoseizure brought on by a conversion reaction.

 

...huh?

 

Rich blessings.

---

MC jae

crazyheart's picture

crazyheart

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Good news to wake up to here on the Prairies. Have a restful day.

ab penny's picture

ab penny

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DKS...to believe that only the "faithful" have a supportive community is incorrect.  Comparing your experience and calling this "a peril of parenting" is woefully inappropriate, but let's take that debate to another thread.

 

How was your night, chansen? 

 

 

revjohn's picture

revjohn

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Hi All,

 

I think, that at the very least we can agree that we are attempting to build community.

 

I'm mindful that "virtual community" is, all things considered, a far cry from real community.  Sometimes it is all one has and to the degree one leans on or one learns from virtual community there are acts of faith.

 

Chansen trusted us with his family tragedy.  That is an act of faith.

 

We have responded with the wisdom and grace we have at hand trusting that in someway it would be a comfort.  That too, is an act of faith.

 

Trusting in physicians and nurses and labs and equipment.  That is an act of faith.

 

We could argue about what it is that we are actually trusting.  Disagreement on that score is not one being faithful and the other being faithless.

 

In fact, trusting in this "virtual community" to provide something that can help in the "real world" is probably the biggest leap of faith anybody has ever taken with respect to WonderCafe.ca.

 

Fighting about definitions in this place, with so much disagreement about how the world works in general is not going to be much help to any and it seeks to unravel the trust that we have been labouring to build.

 

Chansen and I do not share the same kind of faith.  Each of us have some faith in something.  In the waiting rooms of life faith takes the broadest definition available.

 

Grace and peace to you.

John

chansen's picture

chansen

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DKS, I trust your daughter is home and resting now.

 

To be clear, I have faith in my son.  He has always been a fighter.  He has always tried to do things before his little body would let him.  He's fighting right now.  He's has his eyes open for the better part of 40 minutes.  He's looking around.  He's crying a little.  He's trying to express himself.  He's having longer waking periods every day. All are positive signs.

 

But when DKS calls this is a "community of faith", that's not the type of faith DKS is talking about.  Parts of this forum, I agree, are about faith, and we discuss and debate faith all the time.  The community is not about faith.  The community is about sharing and trust and personalities in some cases, friendship.  This is a forum which was started by a faith-based organization, which invited (and got) people of faith and no faith.  It is a community of people.

 

If you kick those of us without faith out, then you could call it "a community of faith".

 

I didn't start this with the intention of blogging about the experience.  I was just going to point out how lucky were are to have these people who work late into the night on Sunday, who care, who are so competent, and who save lives every day.  I wouldn't have my son here at all without them.  To me, if you have a need to worship something, worship them.  At least they deserve it.

Pinga's picture

Pinga

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Sounds like there are hopeful signs this morning again, Chansen.

 

We are here with you.  Right now my energy isn't wanting to be spending it defining community or faith or where God/god is.  Why? coz it is a never ending discussion. I hope you don't mind..

 

For me, if you will allow us, it is for this community who does care about you, to walk with you.   

 

It is a time to appreciate the medicine, the EMS, the country that has a place like Sick Kids.

 

 It is a time to share wisdom gained through similair nights of our own. There is wisdom in this space gained through terrible situations or their own profession.  Not the same, as no two are the same, but similair.

 

It is time to sit with a friend through the dark nights of the soul.

 

It matters not what we believe.  

 

It matters how we be.....how we act.

 

It matters that we are here.

 

May today be a day with a small win, chansen.  There's a big cheering squad for Carter right now.....and for you & your wife and your family

Neo's picture

Neo

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Good news Chansen, glad to hear it.

Kimmio's picture

Kimmio

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chansen wrote:

 

 

 

 

 

To be clear, I have faith in my son.  He has always been a fighter.  He has always tried to do things before his little body would let him.  He's fighting right now.  He's has his eyes open for the better part of 40 minutes.  He's looking around.  He's crying a little.  He's trying to express himself.  He's having longer waking periods every day. All are positive signs.

 

 

  That's great news chansen!

ab penny's picture

ab penny

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Those sound definitely to be positive and encouraging signs, to me. 

 

I agree, wholeheartedly, about our medical services in emergency situations.  The pressure they face each day is beyond my comprehension, but I'm sure glad it isn't beyond theirs!

 

Rooting for your young man, chansen...

revjohn's picture

revjohn

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Hi DKS,

 

DKS wrote:

And yes, I've been in your place. I was at the ER last night with my daughter who was having a psuedoseizure brought on by a conversion reaction. I call it the peril of parenting.

 

I'm sorry to hear of your and your daughter's night in the ER.

 

I'm hoping that with the light of day things are looking brighter with her.

 

I don't envy you your journey either.  Anyone dealing with anything in the DSM is not walking through the park foot-loose and fancy free.

 

May God be with you and your family.

 

Grace and peace to you.

John

seeler's picture

seeler

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Chansen - good to hear your news.  It sounds like there has been some improvement.  Small steps - but improvement and for this we are grateful. 

 

I too appreciate and support the wonderful people who work in the healthcare profession - from the neuro-surgeons and other specialists to the orderlies and cleaning staff who try to make our healthcare facilities as safe as possible. 

 

And I stand behind Medicare, and am thankful to live in a country where the best of care is given by need rather than by ability to pay. 

 

 

revjohn's picture

revjohn

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Hi chansen,

 

chansen wrote:

DKS, I trust your daughter is home and resting now.

 

Admittedly I know beans about conversion disorders.  Still, symptoms can last for days or weeks.  If a loved one was exhibiting symptoms of a stroke I wouldn't be able to tell that it was a conversion disorder and even if I had a loved one who fit the profile for a conversion disorder I would respond to anything resembling a stroke as if it were a stroke.

 

I think that such things would terrify any parent.

 

chansen wrote:

All are positive signs.

 

They are indeed very positive signs.

 

chansen wrote:

But when DKS calls this is a "community of faith", that's not the type of faith DKS is talking about.

 

That requires you to get inside his head and know everything he knows as he knows it.

 

chansen wrote:

The community is not about faith.  The community is about sharing and trust and personalities in some cases, friendship.

 

The community is not about a specific faith.  If our community is about sharing and trust (particularly trust) then it is about faith, even if only in the broadest sense of the word.

 

chansen wrote:

If you kick those of us without faith out, then you could call it "a community of faith".

 

So far as I can recall it is only those who have claimed to be proponents of a specific faith who have ever been kicked out of WonderCafe.ca.  Which doesn't mean we are a community of anti-faith either.

 

chansen wrote:

I didn't start this with the intention of blogging about the experience.  I was just going to point out how lucky were are to have these people who work late into the night on Sunday, who care, who are so competent, and who save lives every day.

 

Whether we are lucky to have them or blessed to have them the fact remains, such individuals are a credit to our race and a benefit to our society.

 

Lest we forget, they are human and prone to screw up just as much as any human is.

 

chansen wrote:

I wouldn't have my son here at all without them.  To me, if you have a need to worship something, worship them.  At least they deserve it.

 

Sometimes they do.

 

Back before I left Newfoundland and Labrador I was forced to remove two separate physicians from two separate hospitals from providing him with care.  The first, in an attempt to sedate him for a plane trip actually administered a dose which could have killed him.  The second simply couldn't be bothered to address concerns or converse with us, the parents, as if we were anything approaching intelligent.

 

The final straw for us with the Health care profession in Central Newfoundland was after I spent 45 minutes restraining my son (he was 13 at the time) during a manic episode.  The emergency doctor on call decided to cancel the ambulance we had called for without passing that information on to us (that resulted in a huge meeting with the Hospital adiministration and a promise that any repeat incident would be dealth with very publicly with as much press as I could get interested) and when we called for a second ambulance the Psychiatrists on duty left their pagers in their desks and left the hospital so that emergency could not contact them.

 

If I hadn't been so physically exhausted I'd have put the ER doc and those two Psychiatrists in their own ICU.  And, I would have done it gladly.

 

Sick Kids is a top notch hospital and I am so pleased that your son has received the quality of care that he has.  Not every hospital has a staff so talented or competent.

 

Without wanting to diminish anything you or your family has endured.  A couse was found and treatment plans could begin and you are seeing positive results because of it.

 

David, his daughter and his family are going through something else.

 

If the geography had been different perhaps the two of you would have spent the night in the same lounge sharing the same fears for different reasons.

 

To be completely honest.  If you don't have to deal with mental health issues with any of your children such as David and I have you will never appreciate how lucky you have been.

 

If you want to dump on us for trusting something you don't that is up to you.  And maybe it helps you to blow off some of the fear that has been bubbling around inside of you.  Since I currently don't have a child experiencing a medical crisis it is probably fairer that you take whatever anger you have out on me.

 

Grace and peace to you.

John

ninjafaery's picture

ninjafaery

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Just popping in with a virtual beribboned balloon (something shiny & colourful) to attract the attention of a wee boy. Gentle murmurings in the general direction of the Hansons.

Alex's picture

Alex

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The stories shared by RevJohn just confirms me how Chansen appreciation of his guardian angels in Toronto's health care system, and at sick kids in particular. 

 

Your son is in the right place.

 

Health care workers also need support systems, and often  in smaller communities,   that is not available for them. It affects their abilities, and the knowledge that they aquire,  and without others to support them patients pay the price.

 

After almost two years of an extreme amount of pain and years of various unexplained and believed to be unrelated symptom , 6 different kinds of specialists in Ottawa I went to the Toronto Genral Hospital last month , and was diagnosed within a morning and started a year long treatment program. Now a month after starting a drug therapy, I am starting to heal after 1 month of a drug treatment. . 

 

I am just say this,  Chansen to reassure you that your son is getting the best help.  you  can be assured that your sons doctors will have other docotrs and health care specialist to answer their questions, and health care officals know on days that they they are ill themsleves can stay home, because there are others who will step in. So your doctors and other health care providors 

DaisyJane's picture

DaisyJane

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ab penny wrote:

DKS...to believe that only the "faithful" have a supportive community is incorrect.  Comparing your experience and calling this "a peril of parenting" is woefully inappropriate, but let's take that debate to another thread.

 

How was your night, chansen? 

 

 

 

I agree.  It is dangerous, even offensive, to interpret another's experience.  In my personal opinion and experience a trip to the ER (yes, very frightening) is not synonymous with the journey through intensive care with a child on life support.  

 

Kimmio's picture

Kimmio

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It's human nature, I think, when someone is in pain and we're limited in what help we can offer, to be triggered in some way ourselves by a memory of our own experience or that of someone close to us, or to try to relate one's own experience to theirs to find a common ground. Sometimes that isn't particularly helpful, you're right.. I don't think anyone was trying to be malicious. Chansen's in a lot of pain and it's understandable if he's feeling a whole slew of emotions. DKS has just been through something scary and he too is likely feeling a whole slew of emtions. Most of us aren't doctors or trained medical staff and  won't give totally unbiased third party opinions, and this is a social discussion forum. However, I'd like to ask if we can leave our differences/ arguments aside, and specifically focus on chansen's, and especially Carter's well being in this thread.

revjohn's picture

revjohn

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Hi ab penny,

 

ab penny wrote:

DKS...to believe that only the "faithful" have a supportive community is incorrect. 

 

I fail to see DKS making that argument here or anywhere else.

 

ab penny wrote:

Comparing your experience and calling this "a peril of parenting" is woefully inappropriate, but let's take that debate to another thread.

 

If DKS was attempting a pissing match kind of comparison claiming his pain and suffering as a parent watching a child in a medical crisis is greater than chansen's pain and suffering as a parent watching a child in a medical crisis then I would agree with you.

 

I really do not think that he was.

 

Nor, for the record am I.

 

There is a connection between chansen and DKS in that both have been to the hospital and both are helpless to do much about it other than watch.  Our support for one does not come at the expense of our support for the other.  

 

At least I would hope that it doesn't because if it does then odds are strong that what we are offering to the one is no better than what we are not offering to the other.

 

Taking a strip off of DKS doesn't make things better for chansen's son any more than taking a strip of chansen would make things better for DKS's daughter.

 

With respect to the peril of parenting.  DKS points to the very real pain of any parent who loves their child and knows that they are suffering.  It is par for the course.  Some parents will pay in spades and others are going to be asked to pay very little.

 

Pain doesn't need to be justified and just because somebody else's is quantifiably greater that doesn't make a smaller pain hurt any less.

 

Grace and peace to you.

John

Pilgrims Progress's picture

Pilgrims Progress

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Chansen,

I'm so pleased to read that Carter is showing more positive signs.

 

As to all this talk about faith...........

 

I have faith in your ability to be the best dad that Carter could wish for.

 

BethanyK's picture

BethanyK

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I've been away from my computer for a few days but have been thinking of you and your family a lot. I'm so sorry to hear the bad news but am excited with the prospects of some good news too. Hopefully Carter can be moved to his own room Tuesday and you and your wife are able to be closer to him.

 

((((Gentle hugs and warm wishes for you and the little guy)))))

Pinga's picture

Pinga

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just popping in, to say that i'm thinking about you chansen.  watching hockey & now golf after coming home from errands...and popping in .  

 

if you feel you are able and you feel it is something you wish to share,  can you tell us what signs you are looking for in terms of awakening ability or hope....i think you indicated focussing on you would be a good sign.  Have the doctors indicated any patterns to look for....          

waterfall's picture

waterfall

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Hi Chansen, I've been away for a couple days but your son has not left my mind. While travelling in the car I heard John Lennon singing "Beautiful Boy" and because of the picture you posted, it immediately brought to mind you and your son.

 

I'm so glad that your son is showing some progress and that you are pleased with the care you are receiving at sick kids. My brothers daughter (my neice) was a "frequent flyer ,( so to speak), between sick kids and McMaster, with a rare kidney disease. Three tranplants later and the ability for science to advance every year, allowed her to live until she was 29 rather than to the age of 5, which was the prognosis for cystonosis at the time of her diagnosis. She desperately wanted to live so much that she was an "experimental" child for every new drug developed and actually became the first child in Canada to use peritoneal dialysis. (something so common today) Her resiliency was amazing and I wouldn't be surprised if some doctors and nurses didn't remember Lindsay even today.  I do thank God for sciences' ability to keep up and keep charging forward with new "cures" or whatever medical breakthrough that is discovered. For some it is timely, and for others not in time.

 

May I mention that I am so impressed with how you seem to be handling yourself? From the many times we've conversed (usually on opposite sides, but who doesn't like a good argument once in awhile? And often yours are pretty good), I trust you are on a fact finding mission? You strike me as someone that will become a very good advocate for your son. Remember, you and your wife know your son like no other, so when a "learned" doctor tells you he has all the answers, my experience is that no doctor ever knows ALL the answers. Everyday I see patients making a fool out of some poor doctor that operates strictly by the text. The doctors that think outside of the box and are prepared to change course in the middle of a diagnosis(if need be) usually are what I lean towards. And Chansen, next to you and your family, it will be the nurses that have the closest contact with your son. They are the doctors eyes and many times when you have concerns and notice changes in him and need more answers, it will be the nurses that will verity it and contact the doctor if it's a relevant change. They are there 24/7. The doctors not so much and often they will rely on the information provided by who is working that shift.

 

I am really  rooting  (still praying too) for your little guy.and the whole family. It's wonderful that soon you will be sharing a room with Carter. Being able to physically touch each other is so important.

 

The progress may seem slow, but you have progress.

busymom's picture

busymom

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Hoping it's been a good day.

ab penny's picture

ab penny

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Hi John...we see things differently and I'm good with that.  I'm grateful for the wisdom you continue to share with chansen as some of the comfort, indeed, lands on the rest of us as we struggle with the thought of this young boy facing a life challenge.

 

chansen...I hope there are some peaceful moments for you and your family this evening...

chansen's picture

chansen

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Hey all.  He is getting meds to relax his muscles.  They are going into spasm and stiffening up, which could be causing him pain and stiffening up his joints in the long term.  He spent a lot of today "awake", which means his eyes were open, but not obviously focused on anything, with a lot of involuntary movements.  While I was stroking the bridge of his nose up to his forehead, though, he went cross-eyed trying to follow my finger, so that was good.

 

This is a long road, I'm aware.  My wife is determined to bring back as much of his abilities as we can, as am I.  We see his efforts and we think he's frustrated and mad and scared, trapped in a body that won't do what he wants it to do.  He could regain a lot of function, or very little to no function.  We just don't know, but we'll fight for every improvement we can.

Pinga's picture

Pinga

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aaah, chansen.  just stroking the bridge of his nose....sounds like a great thing to do.

RAN's picture

RAN

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Chansen, I hope and pray that Carter will continue his recovery and that you and your family will find everything you need throughout this stressful time. Everything I have heard about SickKids hospital is good. I hope the medical staff continue to play the role of guardian angel for your whole family. It also seems you and your wife have been like Carter's guardian angels yourselves.

Sorry I don't have anything wise or helpful to say, but I see RevJohn and others have that well covered already. Best wishes, and blessings from whatever sources blessings come.

airclean33's picture

airclean33

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Hi Chansen-- I finly found were you are. I hardly ever come off Religion and Faith. I am sorry to hear of your problem with Carter your son. I have a son of my own and can understand it must hurt. Anyway friend I have others like me who are not sure, how to talk with you on this .I will tell them same as I tell you. We Hope your son is well soon . We will carry this Hope till he is home and safe with his family.You take it easy Hansen, and remember. Your wife mite need someone, two lean on as well.May your day be brighter today , than yesterday. airclean33 

Tabitha's picture

Tabitha

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Chansen,

Glad to hear of the progress of carter. He is now awake more and following your finger is positive. My thoughts and prayers are with yur family.

I count you and your family as part of the wondercafe community.

 

DKS, sorry to hear of your time in ER with your dayghter. May you and your family also feel support from this community and also from yur real life faith community.

chansen's picture

chansen

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Back for another night.  He's resting, so that's my cue to rest, too.

 

Airclean, thanks.  My wife and I are doing our best to prop up one-another.  Her brothers were through for the first week, and left Sunday morning.  My folks are with us now.  We talk as much as we are able.  We encorage our son, and each other.  My wife and I have made a pretty good team through a lot of adversity.

Pinga's picture

Pinga

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Chansen, although my boys are younger than you, i am betting that you are young enough that had i started earlier, that I am old enough to be your mom.

 

so....i hope you don't mind, but, think i'm going to offer you this....coz, i don't think you are ever too old for a lullabye.....try to sleep, Chansen.  

 

 

From Connie Kaldor, Prairie lullabye

 

 

When the sun on the prairie is going to sleep

You can see it turn golden and red in the west

There's the barest of breeze in the shelterbelt trees

Singing each baby to rest

 

They sing lullaby, lullaby, coolies and sloughs

Lullaby, lullaby, coolies and sloughs

The wind and the willows will whisper to you

Lullaby, lullaby, coolies and sloughs

http://www.cduniverse.com/productinfo.asp?pid=7102441

naman's picture

naman

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Chansen, this is my first comment on this thread which I have been following from the start.  Just adding my name to the list of those expressing support here at WonderCafe. Thanks for keeping us posted. -Naman

chansen's picture

chansen

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Back with him just before the nurse's shift change, and he's still sleeping, if a bit restless with his leg moving periodically.  Have to leave for an hour soon.

unsafe's picture

unsafe

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HI chansen

 

Just want to let you know I'am thinking of you and your family at this time .I hope Carter is well  soon --- 

 

your quote----  We encorage our son, and each other.  My wife and I have made a pretty good team through a lot of adversity.

 

A you will make it through this one as well ---be well --be strong and never give up on hope ---

Alex's picture

Alex

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Heres hoping for a day of healing and good news for your son.

 

 

revjohn's picture

revjohn

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Hi chansen,

 

chansen wrote:

My wife and I have made a pretty good team through a lot of adversity.

 

That is good news.

 

As soon as the two of you feel able you need to go out to dinner together and get some alone time.

 

In walking alongside of families I wish I had been able to see this sooner.

 

There is a phenomenon when a couple is forced into extreme parenting mode and both invest their time and their energy into being mom and dad and neglect the husband and wife dynamic.

 

Carter is making tremendous gains.  Which makes it all to easy to believe his recovery will be phenomenally wonderful.  Odds are strong he is still going to need you and your wife to be mom and dad to a greater degree than he did before.  Should his progress level off a little and become more difficult than results have indicated to date you will be tempted to be more mom and dad than husband and wife for a little longer.

 

Which is completely understandable and somewhat sensible.

 

It is also divisive.

 

It is divisive in that it robs you and your wife of the chemistry you enjoyed together it builds within the both of you an understanding that you will do without that husband and wife intimacy.  A switch is thrown and about the time the two of you have time to turn that switch back on it may be buried behind things and you don't have the energy to go looking for it.

 

It is hard to tend to those flames when our children are in distress.  The longer we let the flames die down the closer we come to losing that spark altogether.

 

Right now the two of you are pulling shifts to be with Carter which is commendable parenting and both of you deserve all the pats on the back others are willing to give.

 

I am not concerned about your ability to parent.

 

I am concerned that you not lose the relationship that made you parents and is ultimately the foundation your parenting is built upon.

 

I know that all things considered the time your family has been in crisis is short.  I also know that the longer such intimacy feels wrong somehow the stronger the feelings of wrongness grow.

 

So again, as soon as you are able take your wife out on a date.  Leave the cares of parenting on a shelf for a while and be a couple again.

 

All of those families you have sat quietly beside in the hospital this terrifying week.  A good number will not survive as couples because they will dismantle their marriages to be the parents they think their children need.

 

I continue to be pleasantly surprised by your son's progress.  I cannot tell you how rare a thing that is to see in my vocation.  Typically I am the phone call of last resort and the only expertise I can offer is how to walk through the valley of the shadow of death.  Years of trying to help others pick up the pieces after a tragedy has convinced me some pieces should never be dropped in the midst of tragedy.

 

The piece that is you and your wife is, in my professional opinion, a piece neither of you can afford to let drop.

 

Be strong.

 

Grace and peace to you.

John

chansen's picture

chansen

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Thanks, John.

 

And know that I wasn't so much "dumping" on you earlier, as I was frustrated by all the thanks that some of these amazing first responders and hospital staff deserve, while religion tells people to thank something supposedly so amazingly great, you're suprised to learn that it is yet so shallow as to require worship.  Yeah, I'm frustrated.

 

I'm out of his room now, while a six-month-old with ongoing heart problems is tended to.  My boy is in a cardiac critical care unit, though his heart has been stable since that night.  He may be moved to the neurology floor today, or maybe tomorrow, where he will be in another ward ennviroment for observation, before being moved to a room.

 

I hear what you're saying about my wife and I as a couple.  We'll be fine - our bond is extremely strong.  We need to at least know a little more about our boy before we can breathe, let alone go on a date.

 

DaisyJane's picture

DaisyJane

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I strongly concur with John that taking care of yourself, your partner, and your relationship is very important.  I also agree that dating during crisis mode was also the farthest thing from our mind as well.  Our son is medically fragile and hospital visits are, sadly, familiar terrirtory (though lately, not to the seriousness of your son's).  I have found during "crisis mode" that self-care for both partners tends to be our priority.  Sleep when you can. Try to eat healthy food.  Get out of the hospital for a brief walk when possible.  Talk so you know where each other is at. If one is "frying" try to spell that partner off for a bit. Accept offers of help. When life is calm once again the importance of dates re-emerges.

 

However, I  would also like to address the myth that parents of ill, disabled, and complex children are doomed to marital and family breakdown.  Indeed it happens.  However, statistically speaking, marriages of these kind do not break down any more than the average.  The rate of divorce and separation is identical to the population with able-bodied children.

 

Qualitatively speaking (from a research standpoint) we know that good marriages, in these situations, tend to get stronger.  Troubled marriages deteriorate more precipitously and have a conveniently available scapegoat (the crisis).

 

Chansen.  I am so glad Carter is showing signs of improvement.  You and your family remain in my thoughts and prayers. 

revjohn's picture

revjohn

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Hi chansen,

 

chansen wrote:

And know that I wasn't so much "dumping" on you earlier

 

Pastorally speaking it wouldn't matter if you were.  Strong emotion needs to be expressed and sometimes its easier to pull the trigger at an actual target.  Part of my pastoral responsibility is, from time to time, to stand as that target.

 

All things considered it is better for me, or someone like me, to take a slap than it is for someone you are in a close relationship with.  In the incident between DKS and yourself all things being equal, I'd be more than happy to sit back and let the two of you duke it out amongst yourselves.  DKS is a respected colleague and I know that he has the pastoral ability to take it.  All things are not equal at the moment.  Both of you are in different hospitals concerned with the health and well-being of your children.

 

He needs to be a target of criticism as much as you do at present.  Which is not at all.

 

I stepped in because I am not in hospital and having been through the hell of multiple hospital visits for my own son and having sat with hundreds of families as they endured their own nightmares I know how anger and frustration build.  I'm like a pressure valve.  I'm the safe spot to blow at because I won't take it personally and I won't hold it against you.

 

You may not want or need it.  It is there at any rate.

 

chansen wrote:

I'm out of his room now, while a six-month-old with ongoing heart problems is tended to.  My boy is in a cardiac critical care unit, though his heart has been stable since that night.  He may be moved to the neurology floor today, or maybe tomorrow, where he will be in another ward ennviroment for observation, before being moved to a room.

 

As always I trust in the quality of care that you are getting at Sick Kids.  Their reputation is well deserved.  I am also glad to hear that he is doing well enough to move out of cardiac critical care.

 

My part of my pastoral care training was spent on a neurology floor.  It was no picnic.  I will hope that Carter's progress is as quick there as it has been in the cardiac critical unit.  I will not be surprised if it isn't.  And that is no knock against your son.  It is an awareness that for the most part our bodies are not that different than a car.  Parts can be swapped out with minimal difficulty.  The Brain isn't as simple as a car.  Your son's youth works to his advantage though it increases everyone's concern.

 

chansen wrote:

I hear what you're saying about my wife and I as a couple.  We'll be fine - our bond is extremely strong.  We need to at least know a little more about our boy before we can breathe, let alone go on a date.

 

Which is fair.  Having been this way before I don't leave things to chance.  Forewarned is forearmed and as DKS and I have both shared.  You and your family have miles and years to go before this whole horrible business is rendered, "remember when."

 

With my son it was 4 years of deterioration before we found ourselves among physicians who would actually listen to our concerns.  You are probably just starting your journey.  I hope it is short.  I have no reason to think or believe that it will be.

 

Part of that is me preferring to look at worse case scenarios and be prepared but pleasantly surprised rather than to build hopes which cannot be sustained.  You and your family will cope in the way that best suits your temperments.

 

And if my warnings are wide of the mark in Carter's case I will never be happier than to hear you say, "I told you so."

 

Hang tough.

 

Grace and peace to you.

John

stardust's picture

stardust

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Hi Chansen

I'm not aware if yourself or others care to open links?

 

  Somebody sent me pics. of the Royals which I wasn't able to access on the website. Instead I found this article. I thought about your golden haired angel so I'm posting it. Gosh....there was good news for this family and I'm sincerely hoping there will be good news in the future for you and your family too.

 

gecko46's picture

gecko46

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That was a deeply moving story, Stardust. 

It highlights the importance of never giving up hope, of the healing power of love, and the indomitable spirit of youth.

Kimmio's picture

Kimmio

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Sounds like things are going a little better. That's good! I'll continue to think of you all.

Birthstone's picture

Birthstone

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Hi there Chansen, and everyone...  just checking in and topping up the best wishes.  I loved the pic of your boy with his crazy happy tongue ;)  There is nothing sweeter than stroking our kids' wee faces, and I imagine that it is the best way to stay connected through all this. 

 

somegalfromcan's picture

somegalfromcan

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Hi Chansen - just checking in to let you know that I'm thinking about your family and hoping that today is a good day for Carter.

 

DKS - I am also thinking about you and hoping that things are going better for your daughter today.

seeler's picture

seeler

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Chansen - just to let you know I'm here, and still holding you in my mind and heart.  Waiting as you wait for any change, however minor.

 

 

Pinga's picture

Pinga

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chansen, just thinking of your parents,hard to see their children suffer as well as their grandchild.  

 

daisyjane, thanks for offering your wisdom on this thread...

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