Henry's Homemade Formula

Our journey towards adding "real" foods into Henry's Homemade Blended G-Tube Formula

Post viral ileus

According to the online medical dictionary portion of  http://dictionary.reference.com, an ileus is:

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ileus  il·e·us (ĭl’ē-əs)
n.
Intestinal obstruction causing severe colicky pain, vomiting, constipation, and often fever and dehydration.

 

Basically, a fancy way of saying Henry couldn’t stop throwing up!  He didn’t have a “foreign” obstruction within his intestine, instead his gut was so irritated from vomiting so much due to the flu, that he got caught in a cycle and couldn’t get out.  The peristalsis (the natural contraction and relaxation of muscles) within his gut failed and essentially… nothing was moving.  He was backed up!

Lots of people vomit perfusely with the flu and Henry was no exception.  But for whatever reason (some magical combination of low muscle tone, a sensitive digestion system and just being him) Henry couldn’t stop.  For a while, even the smallest amount of liquid came right back out again.  In the end… he just needed to rest.

No magical pills… no impressive medical wizardry… no operations…

Just rest.

It took just over 20 hours with no food – just Pedialyte – in order to give his digestive system the rest it needed.  And he hasn’t thrown up once since then!

We’ve been home for a number of days now and he’s doing great!  Back to his old self, eating more than ever, with loads of energy. Too much almost – for the past 3 days he’s “chosen” not to nap in the afternoon (thus my delay in posting… I’ve lost my prime email / blogging time!).

The flu did take its toll.  Just prior to him getting sick we weighed him at home and he was 9.2 kgs.  I weighed him the day after we came back and he was 8.7kgs.  That’s a big drop for a little guy… he hasn’t weighed that much since last November / December.  But that’s ok.  We start again and he’ll get it back.  We’ve proven prior to his flu that the homemade diet was working and he could gain weight – so now we roll up our sleeves and keep on blending 🙂

 

Cheers, Shelley

 

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My baby has the flu – update… at the hospital

They told us…

“DO NOT LET HIM GET SICK OR HE’LL END UP AT THE HOSPITAL”…

…and unfortunately… they were right.

Here’s the scoop:

Henry started throwing up last Tuesday evening.  We didn’t think much of it, as it’s common for him to get sick a couple of times a week.  The dr’s call it a “developmental challenge”… aka… we’ve done everything we can to reduce the vomiting – this is just way the it is.  So, he got sick.

But then Wednesday morning, he got sick again.  And then again.  And then again.  And by Wednesday evening he had a temperature of 39.8, was throwing up even very small amounts of water and was getting very lethargic.

He had the flu.  😦

But we still didn’t worry too much.  I had been sick for a day or two the week before and all his symptoms were normal for the flu.  So we kept trying to give him water and he kept throwing up and thus was the circle of life.

Thursday things got worse.  Henry still couldn’t keep down even small amounts of water, he slept for basically the entire day and was so lethargic he couldn’t even sit up on his own anymore.  His muscle tone was so low he would tip over if not supported.

Friday showed slight improvement – he started keeping down some Pedialyte and his fever had gone down considerably.  We visited our family doctor just to be safe and she wasn’t concerned about his low fever.  Her advice was what I thought it would be… keep him hydrated, let him sleep and if either his fever returns or his vomiting isn’t resolved by mid-weekend, then go to the ER (her reasoning for the ER was, since it was the weekend, no walk-in clinic would get any test results back until the following week, so would likely refer us to the local hospital anyways).

Saturday offered a glimmer of hope… his personality returned a bit and he kept down a bit of food.  Out of 5 meals / snacks a day, the threw up 4 and kept down 1.  Not great odds and a failing mark in school… but for us – we’ll take it!

By this time I’d made a new batches of food, just in case.  Because I make Henry’s food myself, I am always super-careful about sanitation and food spoilage.  I’d returned to all foods that Henry had tolerated well in the past, and didn’t use anything that had been in the previous batches.  That way if his vomiting was in anyway due to his food, this would resolve it.

But Sunday came and the vomiting continued.   We fed him 3 times at home and he puked up everything.  So… 2pm Sunday afternoon off we went to the hospital.  Because of Henry’s medical background, and because of our previous experiences at our local hospitals, we always go Children’s Hospital, even though it’s a farther drive away.

All they do is kids… and yes, they really are better.

And thankfully they weren’t too busy when we arrived.  Shawn barely had time to park the car before we were admitted and taken to a room.  We did blood tests and Xrays and all was normal (yeah!).  No obstructions, no bladder infections… all was good.

To make a long story short(er)… the working assumption was that as a result of vomiting with the flu, Henry was caught in a cycle of vomiting – his little tummy was so irritated by getting sick so much that his digestive process basically shut down.  Nothing in… nothing out.  He would eat as much food as his tummy could hold, puke it all back out, and then start again.  As long as we kept feeding him, he would keep puking.  The circle of life.

So the plan was… go slow. That’s it.  Let Henry’s little tummy calm down all by itself and hope for the best.  If there’s nothing actually “wrong”, then there’s nothing to “fix”.

So we tried Pedialyte, and it stayed down; we tried small amounts of food + Pedialyte mixed, and it stayed down… so back home we came to continue with a small mixture of Pedialyte and food overnight and hope for the best.  The best did not happen.  Henry tossed and turned all night and at 6am Monday morning – out it all came!  And boy did it look bad!

(note to self… when using beets in a homemade formula, it looks like blood when vomited back up)

You should have seen the bed… covered from corner to corner with bright purple puke – it looked like some mass murder site from a tv crime show.  At some point I’m sure I’ll look back at this at see the humour, but right now I just see the bed covered in purple puke with Henry sitting crying in the middle. 

Back to the ER we went.

And we tried it all over again…

So we tried Pedialyte, and it stayed down; we tried small amounts of food + Pedialyte mixed, and it stayed down… so back home we were sent and hope for the best.  The best did not happen.

We barely made it out of the parking lot before Henry threw it all up again.

Back to the ER we went.  It was so quick we didn’t even have to back through admitting.  I just went and found our nurse and she “un-discharged” us.

And we started again.  Pedialyte – but this time over night and through the next morning.  Lots of tummy rest – no food whatsoever.  And this time they didn’t send us home.

As an interesting aside – apparently a child really can survive on Pedialyte alone.  It provides just enough energy to sustain the brain and major organs, but not enough to maintain weight or muscle tone.   So our little guy is losing all the weight he had gained, plus more.  But he is staying well hydrated, which is the most important thing.

After approximately 15 hours of Pedialyte alone, we slowly introduced some baby food pears into the mix.  Then baby food carrots.  So far so good…

This is where the story ends for now… still at the hospital and still on baby food + Pedialyte.  And this time they’re not sending us home, at least not tonight.  We’ll see how it goes tonight and tomorrow morning…

More food + Less Pedialyte hopefully = No vomiting and going home tomorrow.

Cross your fingers and hope for the best :).

Cheers, Shelley

 

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My baby has the flu

My poor sweet baby has the flu.

Mother’s guilt is setting in a bit as he likely got it from me.  I felt poor all last week, and then it hit me – I could barely get out of bed.  But it passed quickly and I was back to normal again in a day or so.

But now my little sweet pea is sick.  I know every kid gets sick… and as they get older it’s going to happen more and more.  And I know that every parent worries…  so now it’s my turn again.

Thankfully Henry hasn’t been sick too many times before.  We were warned (over and over again)… “DO NOT LET HIM GET SICK OR HE’LL END UP IN THE HOSPITAL”.  His lungs and other muscles were so weak at first that he wouldn’t be able to fight it.

So we were super cautious.  No mom & baby groups; no library story time; no playgroup; no family visits if someone was sick.  We shut ourselves in at home, hung out and played.  I have to admit, I missed the camaraderie of being with other mom’s and babies and I think Shawn missed out too.  But we had a mission – delay Henry’s first cold as long as possible to allow his to be as strong as possible when it happened.

And it worked

Henry didn’t get his first cold until November – over 8 months after he was born (we’d been to both Sunny Hill Health Centre and BC Children’s Hospital for appointments in the same week).  It took him 3 weeks to get over it.  His second “bug” was just after the surgery to insert his g-tube in February.  He was transferred to Sunny Hill for recovery and the stomach flu was “making the rounds”.

So despite all our best efforts, both Henry’s colds coincided with medical appointments… whatcha gonna do???

But I can’t place blame anywhere else this time.  My little sweet pea is getting bigger, more social, and more active.  And with this comes more colds and flu :(.

Just wait until playgroup starts in September!

Cheers, Shelley

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9.2 kilograms!

Yippee!

Henry’s gained weight.  By our scale at home, this is the most he has ever weighed :).   Albeit, it’s a very small increase, but who cares… the scale’s tipping in the right direction…

Finally!

What has brought about this wonderous turn of events…?

It’s anyone’s guess!

Likely a combination of 3 tablespoons of oil / day… and increasing his PEG 3350 to 1.5 teaspoons per day… and the magic of just being a kid.

Yippee!

 

ps… for all us imperial lovers – 9.2 kgs is just over 20 pounds.

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Henry’s Walker

4 Wheeled Posture Control Walker - the same model as Henry's walker.

 

I had a few people asked about Henry’s walker from my previous post – so I did some searching and found the company online…

The walker we have is the 4 Wheeled Kaye Posture Control Walker from Kaye Products Inc (kindly loaned to us through the BC Centre for Ability).   Here is the product description from the company’s website:

  • Designed to make walking less energy consuming, improve alignment and
    maximize potential for walking.
  • Available in 6 sizes, fitting toddlers through adults.
  • Clinical Studies have demonstrated that posture
    control walkers facilitate postural alignment, balance and components of gait.
  • All walker models fold, for easier storage and transportation.

Henry’s specific model has wheels that are locked so they can only go forwards, not backwards.  They also can only go in a straight line (no corners yet) – this provided him with the most control for when he was first learning.   But he’s doing so well now that Andrea (our physiotherapist) is looking for a new walker that can turn corners!   Yippee :).

“Typical” walkers aren’t good for Henry because they do not provide enough support for his posture.  Most walkers are pushed from behind, meaning the child is stooped over slightly when pushing.  As Henry’s back is already curved, any stooping motion would only exacerbate this.  Because the Posture Control Walker is used with the “C” shape curve going behind Henry’s bum, it forces him to maintain an upright position.  Anytime he leans forward too much, it bumps him in the back and gets him standing up straight again.

Most importantly, Henry loves it!  From the first moment he got into it and realised that he could move around on his own… he got this huge silly grin! :).  It took him about 4-5 days of falling down and getting back up again to figure out how to get the walker to do what he what he wanted it to.  At first, Shawn or I (mostly Shawn!) would bend down and stalk him as he walked… with every step fearful he would fall.   Then we progressed to sitting at opposite corners of our living room / dining room and sending Henry back at forth.  He couldn’t turn around on his own, so would get to the corner and stomp his feet waiting for someone to turn the walk for him.

The fun came when we took the walker on vacation with us.  We debated about taking it, but thought – if we can fit it in… then why not!  I’m so glad we did!  Henry had a blast and it really pushed his abilities. Up until then, he’d only walked on our smooth laminate floors… now he was outside on grass, concrete and gravel.  And the distances were endless!

He fell lots… got up lots… cried a few times… and smiled HUGE!

Now he could really see the possibilities.

Fast forward to today – and Henry almost never falls… has gone for walks around the block (up to 6 blocks)… checked out just about every bus stop and light pole near our home… waved hello to every passing person… stopped and watched every passing bus… visited the bunnies at the house down the block… can drag his walker sideways to turn corners and avoid obstacles… can get in and out by himself…

… and most importantly – he loves every minute of his newly discovered freedom! 🙂

Cheers, Shelley

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Oops… we forgot Henry’s food… !

Here’s the scoop…

Shawn, Henry & I were on our way to Shawn’s Dad’s house for dinner last weekend when… about 5 minutes away from our destination I turned to him and asked…”you packed Henry’s food…right?”.   Shawn got this slightly panicked look in this eyes, turned to me and said something like… “uh…”.

I seem to recall I was a lazy mama that day and had taken a nap and then decided to shower – so I was no help whatsoever in getting things ready. Shawn, on the other hand, was trying to get himself and Henry ready and all our stuff packed up at the same time.  So here we were, 40 minutes away from home with no food for my little sweet pea.  Oops… :(.

Now one might think, knowing my control-freak, anxiety-ridden tendencies, that this situation might have sent me off the deep end.  But on the contrary… I work very well under pressure (it’s those “easy” days I can’t handle!).  Plus, seeing as how I just looked a seemingly “broken” blender in the face the week before – I had a plan! :).

So a quick route change brought us to the closest grocery store to Shawn’s Dad’s house and in a few minutes we were back in the car armed with a container of rice milk and some jars of baby food (the kind designed for first foods, so they’re blended completely smooth).

I have absolutely no idea how much calcium, fibre, iron, calories, etc that Henry had for dinner that night – but I do know he had some strained carrots and peas, chicken and peaches, washed down with a little rice milk.  Sounds like a yummy dinner to me! 🙂

I have already been thinking that it might be a good idea to have a few jars of baby food in the car, for just such a scenrio… guess I was right!

Cheers, Shelley

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43 degree curve

This post isn’t actually about homemade food or eating… but it’s what has been keeping me up at night lately, so I thought I’d share.

Henry had another back x-ray at the end of May and we finally got the report back – the curve in his back has gone from 10 degrees to 43 degrees in less than a year.  REALLY not good.  Even I knew the numbers weren’t good.  When he sits you can see the slouch getting worse and worse.  However until our physiotherapist came for an appointment we didn’t know what they meant.  At 50 degrees is when surgery is usually recommended.  Any surgery wouldn’t happen for several years – age 5 is the earliest she’s heard of back surgery.  Often not until the teenage years.  A rod is inserted in the back to help support and straighten it.  If surgery is done at a younger age, then numerous follow up surgery are needed to “grow” the rod as the person grows.

Henry’s little muscles just aren’t strong enough to support his spine and keep it straight.  So as he grows and moves, the lower section of his spine is curving to the left.  It doesn’t seem to be impacting his movements – which is good – so for now there’s not anything we can do about it.   We asked about braces and such, but all these would do is stop his movements and therefore stop his muscles from strengthening.  He’s an active little guy and we encourage as much movement as possible to help him get stronger and stronger.

He has this great little walker, on loan from the Centre for Ability, that he loves.  It’s not the typical walker that you buy at the store (which our physiotherapist says is very bad and should never be used!), but specifically designed for kids with mobility challenges.  Getting him up and walking is one of the best way to help his back, as it stretches him upwards, strengthens his core muscles and keeps his whole body symmetrical.  So that is now part of our daily routine… walk, walk, walk!  In the house, in the yard, on the sidewalk… anywhere we can… walk, walk, walk!  Thank goodness he loves it :).

Cheers, Shelley

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What is a g-tube?

I get asked this question often.

Or more likely… “what’s that…?”.

Because Henry is always crawling, wiggling, and playing, his t-shirt rides up and his feeding tube can be seen.  I don’t mind when people ask – most of the time it’s general curiousity, and asked in a very polite, well-meaning way (there has been the odd rude comment, which I usually try to ignore).

So when someone asked what was “wrong” with my baby last weekend, I didn’t think much of it.  We were at the grocery store – a rare Saturday afternoon trip – and Henry was trying to reach for something hanging from the shelves.  I gave my semi-usual (talking to someone I don’t know) answer of…  it’s a feeding tube – Henry needs a little extra help eating, so he has that.

She seemed satisfied with my answer and we both went on our way.  But it got me thinking afterwards about how much Shawn & I have learned since Henry was born.  18 months ago I don’t think I had any idea what a feeding tube was, and now it’s part of our everyday life.

As as result of my musings… I thought I would include a short course on… “What’s that…?”.

A gastric feeding tube, or “g-tube” is the type of feeding tube that Henry currently has.  It was inserted February 14, 2011 and replaced the nasal-gastric tube (ng-tube)  he had prior (an ng-tube is a more temporary feeding tube that is inserted in the nose and goes down the throat and into the stomach).  There are many brands of g-tubes available and Henry has a mic-key.  It is a low-profile device, meaning it sits close to his tummy and doesn’t have any long tubes sticking out.  Here is a photo of Henry’s g-tube, taken about a month after it was first inserted.

Henry's g-tube

The g-tube is considered a permanent feeding tube, meaning it is surgically inserted under general anesthetic.  It is done laparoscopically, so there is only a small scar near his belly button.  It can be removed at any time and the wound heals quickly.  During the surgery, the stomach is physically moved and stitched to the side of the abdomen wall.   This tube is changed every 3 months, and Shawn & I can do it at home.

 

 

 

 

Henry’s g-tube stays in because of a small water-filled balloon that is on the inside.  Here is a diagram of what the g-tube looks like when it’s not inside:

 

Mic-Key G-Tube Diagram

Mic-Key

As you can see, the part that you can see in the first photo is only the very top of the “button”.  This is attached to small tube that goes inside Henry’s tummy.  At the end of this tube is a small balloon filled with 5ml of water (the amount of water depends on the size of tube, which depends on how big the person is).  This balloon prevents the tube from falling out.  It is semi-porous, so Shawn & I check the amount of water in it every week or so, to ensure it is still full.

We specifically wanted a mic-key brand of g-tube as it is the smallest and less invasive in daily activities.  Some other styles have long tubes (like a catheter tube) that stick out.  From my understanding, the style of tube you get is largely at the discretion of the surgeon, at least at BC Children’s Hospital.  Henry’s mic-key allows him to participate in all his usual activities… swimming, crawling…playing… anything that any other 18 month old would do.  If he falls really hard on his tummy we check to make sure it’s ok, but thankfully so far we’ve had no concerns.

If his tube were to ever fall out, it’s no big deal as long as we’re close by and notice right away.  If it comes out, and we have a replacement mic-key kit with us, then we’d simply put a new one in.  If we don’t have a replacement, then we can insert a catheter tube (we carry some in our diaper bag, just in case).  Then put a g-tube when we get home.  The problem arises if his tube comes out and we’re not there, or if we don’t notice (like at night).  The body heals tremendously fast, and the hole into his tummy would begin to heal immediately.  Within a couple of hours, it would have shrunk so much that his regular g-tube would no longer fit.  For this scenario, we have smaller sized catheter tubes that we would use.  Then off to the hospital we go… they would likely be able to manipulate the hole enough to get the g-tube in.  If – worst case scenario – his tube falls out and we don’t notice for many hours, then the hole would like heal over.  For example, if his tube fell out at midnight, by morning the hole would be closed.  Then he’d have to have surgery again to reopen it – no one’s idea of a good time :(.

When it’s time for Henry to eat, we fill his extension tube with water (see above diagram for pictures of the extension tubes).  We put water in it to limit the air going into Henry’s tummy.  There are two extensions – a larger one for thicker fluids and a skinner one.  This is then attached to the mic-key “button”.  Then we “flush” his tube with more water – currently 15 ml water before and after he eats – to help prevent the tube getting clogged with dried food (I’ve clogged his tube twice already!).  Then the extension tube is attached to his feeding bag.  We use a feeding pump with Henry as it delivers his food at a slow, steady pace which he seems to tolerate better.  You can also use a syringe (usually 60ml) to push the food into the tube.  I’ve tried this before with limited success.

Henry will likely have his g-tube for quite some time and we are coming to accept this.  It’s not what we envisioned our lives would be like, but that’s ok.  It’s where we are now, and that’s what matters. :).

Cheers, Shelley

Alot of the information contained here can be found in the Tube Feeding At Home manual, from BC Children’s Hospital.

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More Allergy Testing… it runs in the family

It seems Henry’s allergies are a family tradition…

Both Shawn & I have also had allergy testing done in the past month, and now we know where Henry’s propensity for allergies comes from… Shawn!

They share a number of allergies / food sensitivities in common, plus each have some all to themselves.  I have only mild sensitivities to a couple of items.  Here’s a summary:

Henry                                 Shawn                           Shelley

All dairy (cow and goat)    Cow’s milk & cheese      cranberries

corn                                       corn                                   sesame seeds

apple                                     apple

squash                                  chocolate

Whole wheat                       rye

cucumber                             banana

–                                              cod

–                                              various non-food items (pollens, grass &  dust mites)

Shawn  & I decided to get tested after Henry’s tests, but for different reasons.  Shawn has had increasing trouble with eczema for years, and the prescription creams from the doctor worked with limited success.  We’ve tried eliminating substances (from shampoos, soaps, etc) but also had limited success.  I think I nudged (aka nagged) him enough that when he saw the dr the last time he got a referral to an allergist.  And viola…

Dr Bratt said that food allergies often run in the family, so personally… I was just curious :).  She made an interesting observation while we were with her… if there is anything “chronic” in your life… bets are in comes from your food or where you live and/or work.  These are the main constants in our lives. Whether it be trouble with skin, stomach, allergies… etc – what we eat and where we are tend to be the main culprits.

Unfortunately we’re not actually comparing apples to apples, so to speak.  Allergies are the immune system’s response to the world around us and can be a reaction of two different types.  Because of this, there are different tests, and Shawn & Henry had different ones.  Here’s the scoop (as I understand it…)…

Shawn’s Allergy Test

Shawn had a traditional “scratch” tests, done by a local allergist.  He needed a referral from our family doctor and the visit and testing were covered by MSP (our provincial medical coverage).  This tests for responses from immunoglobulin E (IgE).  IgE causes immediate responses such as hives, swelling and congestion – like Shawn’s hay fever.  This tests for a number of common foods (about 25 I think), plus non-food items like pollen, dust, ect.

Henry’s Allergy Test

Henry’s test was done by a finger prick.  It was done by Dr Bratt, a naturapathic doctor, and was not covered by MSP (it cost about $250.00).   “If reactions occur more than two hours after eating a food, they may result from immunoglobulin G (IgG) rather than IgE activity. IgG reactions may cause symptoms such as sleep disturbances, subsequent bed wetting, sinus and ear infections, or crankiness. Blood tests rather than scratch tests are the only way to screen for IgG allergies” (www.drbratt.com).  This tests for 96 different food allergies, but no non-food items.   This is also the test that I had.

Other “gut” problems

Digestive problems may not be the result of “allergies” (aka… responses to IgE or IgG), but may be due to poor digestion.   Infants often have poor digestion that results in trouble digesting wheat and /or dairy.  Other medical conditions such as heavy antibiotic usage or the lack of a protein digesting enzyme.  So just because an allergy test is negative, doesn’t mean there isn’t something wrong.  Poor digestion can result in symptoms such as poor eye contact, irritability, disconnection, and inflammation symptoms instead, such as intestinal irritability, stomach ache and/or diarrhea.  We suspected something was troubling Henry as he often was not digesting his food (he would vomit up food he’d been given 3-4 hours ago).

So… all this results in my grocery shopping trips suddenly becoming a lot more complicated! 🙂

Cheers, Shelley

Most of the information here was obtained from Dr. Anita Bratt’s website: www.drbratt.com.

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Heart Warming Inspirations: “Welcome to Holland”

I was forwarded this story just after Henry was born, and I loved it.  It spoke to my heart and encapsulated what I was experiencing at the time.  I found it again online so I thought I’d add it here.  Enjoy. 

 

Welcome To Holland
copyright 1987, by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared
that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.  After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and  says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy!  I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.  The important  thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.  It’s just a different place. It’s slower-paced than Italy, less   flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you  begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful  time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go.   That’s  what I had planned.”  And the pain of that will never, ever, ever, ever go away… because the loss of that dream  is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very  special, the very lovely things … about Holland.

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