Birds of a Feather….

Some things you just need to go to Costco for.  Well, not "need" but you know what I mean.  I was nearing the end of my first pregnancy, and hadn't been to Costco in years, if I had ever been.  My Dad would come home with magnificent finds, but wisely avoided taking me or anyone else with him. I can't blame him; after shopping for such a large family for years   

(he always did the grocery shopping for our group of 12+) he had his own way to do things and wasn't going to change it for anyone.  The lure of Costco was too strong and it was time for someone other than my Dad to have the privilege of shopping at the consumer mecca.  My Mom and I were going!  She drives a school bus for a living and has no personal vehicle (my Dad is always busy with their shared vehicle) so we borrowed my brother-in-law's car.  We were excited to take a little day trip to the next city over and load up on stuff from the mega store.

We spent too long inside, as can happen.  Aisles upon aisles of things to look at, remark on the good price, and not buy.  Samples at the end of aisles to keep your strength up while you walk the equivalent of 40 city blocks to travel from one side of the building to the other.  What begins as excitement ends in utter despair and desperation to leave.  
"Oooh, look at that tv - it's bigger than my car!" is replied to with 
"Wow, you're right -  I can't believe it's only four months' wages!"  Aisles later, 
"Oh my goodness, there are 800 granola bars in this box"  is met with 
"Oh please don't buy 800 granola bars - they'll never get eaten!"  The last aisles of the store are faced with hatred.  Pure and unfettered hatred.   
"Sharon, do you think this meat would freeze well?  We could really……" 
  "I am going to take that meat and throw it out of the car window on the drive home if I have to stand and talk about it with you." 

Truthfully, I'm never actually that mean.  Well - maybe I am, but I say my mean things with a nice tone with a smile on my face.  I also bounce back quickly.  Well, I think I do.  

This is my Mom.  She presents "normal",
but will wear things like this lampshade on
her head (supposed to be a hat?) that can
cause you to question.

We emerged back into the real world exhausted, a few hundred dollars poorer, and ready to go home.  We started loading up the car.  I noticed a dog bed in the back that I hadn't noticed before.  I moved it out of the way and laughed at how such big things can go unnoticed.  We sat down, and as my Mom went over her receipt I scoured the car for gum.  I found a pack in my visor and found a stack of photos too.  I popped a piece of spearmint from the foil pack and leafed through each photo, showing my Mom a few of a dog who looked a lot like my sister's dog that had passed away several years earlier.  Before putting the pictures and gum back in the visor I spent a good amount of time checking my teeth in the mirror.  Remarkably, only then was my Mom ready to start the car and head home.  

Key in ignition.  The car won't start.  Won't even turn over.  Actually, the key will barely move.  It's as if it's jammed.  My Mom starts messing with the gears - hoping that something is out of place and fiddling with the shift stick will be the trick that gets the car to start.  She tries absolutely everything.  Every trick people who don't know anything about cars try.  Pumping the brake a few times.  Taking the key out and putting it back in.  Gentle at first.  Rough the following time.  Moving the wheel.  Trying to turn on the radio.  Moving the seat forward.  Backward.  Forward again.

We were stranded.  I open my window, and complain that we will have to wait to be rescued while our ice cream melts in the back.  To make things worse, we will probably have to split the cost of whatever repair the car needs since it broke down while we were borrowing it.  

Sitting in despair,  we had only just lost our resolve when our rescuer came to the window.  We must have been noticeably in distress to be attended to while still sitting in the car!  My hopes were immediately lifted, I bent down and stretched my head toward the driver side window so I could smile at our hero.  She asked 
"Can I help you with something?"
"Yes!" My Mother exclaimed, "The key seems to be jammed and just won't turn in the ignition"  
"We've really tried everything" I chimed in, unsolicited.
Our hero looked at us, with an expression I could not place.  Not a smile, but not quite a grimace.  More like the face you make when you've eaten something gross - truly gross - but have to retain composure because of whatever situation or company you're in.  That's the look!  Strained composure.

"That might be because this is my car"  She said slowly, with a combination of contempt, confusion and deep deep pity. 

The look on her face now made sense.  We had the wrong little white car.  Totally wrong.  The car we borrowed wasn't 5 gear, it was automatic. The interior was grey, not blue.  My brother-in-law's car didn't have gum or pictures in the visor.  Didn't have a large dog bed in the back seat.  Oh my asinity - he didn't even own a dog, and none of the photos I leafed through had him, my sister or nephew in them!  

I am confident we were the only ones laughing as we removed our groceries from her car, smacking her gum between our teeth.  We laughed ourselves to tears as we loaded the right car with our purchases, noticing all the things that were obviously different.  Night and day different.  The only thing that was similar between these two cars was that they were small and white.  

Recalling this story always makes me laugh. Out loud laugh.  It's also a grim reminder that no matter how hard I try, or how vehemently I deny it - I possess many qualities (good or otherwise) that make me just like my Mother.  

Please feel free to laugh at our expense.
The first two photos are faces we have obviously deemed acceptable for human interaction.
The second two photos are images of what we perceive as acceptable public (or semi-public) behaviour.
  I am holding an entire serving bowl, meant for ALL guests at a party in order to scoop every last bit of bean salad from the dip container in the centre.  My mother is dancing, full throttle, in her pyjamas. 

My name is Sharon, and my son has Cerebral Palsy.

I recently watched a Ted Talk featuring a comedienne who has cerebral palsy.  The talk is entitled Maysoon Zayid: I got 99 problems... palsy is just one.

Maysoon Zayid.
I do not own rights to this photograph

Maysoon is funny and well spoken.  Although the point of her talk was for the disabled to be fairly represented in the media - it was a different part that stuck.  When she spoke these words, it clung to my heart and I instantly felt like my innards were simultaneously drying into sponge and melting into biochemical waste.  Ever feel like that?   "Humans on the internet are scumbags…  suddenly my disability on the world wide web was fair game."  She mentioned that she was never made fun of as a child or an adult, and it has only been in the online world that people have ridiculed her.   "The doctors said that I wouldn't walk but I am here in front of you.  However if I grew up with social media, I don't think I would be.  I hope that together we can create more positive images of disability in the media and in every day life.  Perhaps if there were more positive images it would foster less hate on the internet." 

Why did this make my stomach turn?  Because I have more children in my home with disabilities than without.  

More WITH disabilities than without.  Out of my 6 children, four are living with  disabilites.  Some are more visible and noticeable than others, but all are very real and affect every facet of their lives. What have I done to help make the world more accepting and kind for them?  

Nothing.  

I love them fiercely.  I do all the "Mom" things I'm supposed to do, and then some.  I've been so busy loving them I didn't realize I needed to shoo the wolves waiting at our front door.    

Maysoon's talk turned a light on for me.  We (parents) used to only have the ability to prepare our young for the world - but now, with social media and the world wide inter web, we can also help prepare the world.  Even if it falls on deaf ears, we can try.  I have a responsibility to make this world a little more kind for my children who will ultimately leave my home and make their own way.  

I will try to impart to you how amazing they are, and hopefully you can share that enthusiasm with your family and friends.  Slowly, we can change attitudes toward disabilities and the online world will begin to reflect that shift.  

Because Maysoon has it, I'm going to start with Cerbral Palsy.  

Cerebral Palsy is a disorder caused by an "insult" to the brain.  It literally breaks down as cerebral = "of the brain" and palsy = "lack of muscle control".  CP can look very different from person to person.  Some people can walk, while others can't.  Some have normal or higher than normal IQ and some have intellectual delays.  It can affect one side of the body or both sides.  People with cerebral palsy (a neurological disorder) are often found to have other neurological problems such as seizures, vision/hearing problems, abnormal pain/touch perceptions, etc.  

My 8 year old son has cerebral palsy. 

Anyone who knows him, knows that he is truly a special human being.  Living with his disability has made him incredibly sensitive, perceptive and kind.  I'd also like to point out that he is so COOL.  I was a total dweeb when I was young.  Yes, I still am - that's ok.   Not him.  As I like to say (in a terrible British accent) "He's got the cool."

 RJ Mitte
I do not own rights to this photograph

When I started watching Breaking Bad, I was ENTHRALLED to see a young man on television with cerebral palsy.  RJ Mitte is handsome, talented and the perfect example of someone living with mild cerebral palsy. 

The internet is a great power.  It really is.  Imagine explaining the internet to any previous generation.  They would call it witchcraft!  You can instantly talk to people around the world, you have access to any and all information, you can even send money with it.  Witchcraft I tells ya!   

The point is, the internet is a great power that can be used to do extensive damage.  It can also be a light in the dark.  A place where people living with or affected by disabilities can support and love each other.  If you live with someone with a disability, or you ARE someone living with a disability - be a light in the darkness.  Make the internet a place for people with disabilities to find comfort and strength.  Make it a place where people can learn about labels and find out what is behind them.

"Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that." -Martin Luther King Jr.

With all of that being said…. let me share.    

When I first delivered my son, they laid his 10lb 2oz body on my chest.  I started proclaiming that the Guinness Book of World Records needed to be called, because I just delivered the biggest baby EVER!  (He was my smallest by the way). 

I felt that newborn on my skin, breathed him in and discovered a place of wonder I didn't know existed.  My midwife noticed he wasn't breathing.  Within seconds my birth room was flooded with an absolute mob of medical staff.  I can't remember where my husband was.  My Dad started watching the clock.  My mother's face went blank.  My baby was blue.  The midwife began distracting me by explaining every detail of the placenta.  

The high from naturally delivering a child, mixed with the energies of countless people fighting to save his life left me not understanding anything that was going on.  I felt high.  I heard voices.  Beeps.  There was a small window between two people where I could see my son, lifelessly being suctioned.  

The hushed, stern voices were suddenly loud.  "He's breathing" echoed in the room and he was wheeled out.  He swallowed meconium during the birth process and it obstructed his airway.  We spent 11 days in the NICU and after many tests were sent home.  

I clung to that child.  He was never away from me.  In a sling to do the dishes.  Bathing with me in a lukewarm tub. In a sling for walks.  Nursing for hours.  It didn't matter, he was alive and I would appreciate absolutely every moment with him.  He might be the only baby my husband never got to spend any time with, I just wouldn't let him go. 

My delightful, remarkable, wonderful son

When it was first suggested my son might have cerebral palsy, I refused to accept it as a possibility.  My perfect child - who was smart, funny and the absolute light of my life couldn't be handicapped.  

I know.  That was my own pride.  My own guilt.  If he had CP, I was somehow responsible.   

I refused to acknowledge it could be cerebral palsy; however,  I could see he had difficulties and that he needed help.  He began therapy to help with his fine motor skills, gross motor skills and speech.  The therapies began and the reports pointed to the obvious.  I read the first round of assessments and cried.  3%, 11%, 5%…. something was wrong, he was not just quirky.  

He had an MRI scan to confirm the suspected diagnosis, and everything was solidified a year or two after therapy began.  

My son had cerebral palsy.  

He was STILL perfect. He was still smart, funny and the light of my life.  

He has friends.  He plays games.  He reads.  He bothers (tortures) his brothers and sisters.  He goes to karate.  He even inspired another set of parents to enrol their son with cerebral palsy in karate. 

He is more than the son I thought I gave birth to.  

He is so much more BECAUSE of his disability.  If he can't physically accomplish something, he keeps trying until he finds a way.  If he can't make a modification, he just keeps trying.  His first year at summer camp, he couldn't stay on his horse for more than 30 seconds without excruciating pain.  He kept getting back on.*  This past summer was his fourth year at camp and he was riding his horse with the other children for the whole lesson without a difference between him and the other children.  They even had to give him trouble for making the horse go too fast!

Your son or daughter with Cerebral Palsy IS the talented, smart, loveable child you wished for.  

I won't say that your friend, neighbour or family member with cerebral palsy is the same as you.  The same as "the rest of us".  He isn't.  She isn't.  If you're our neighbour, you live next to a little boy who struggles to swallow, hold pencils, put gloves on, can't do buttons or zippers, who wakes up in agony because his legs are cramped, who can't move his tongue in a circle like you can (and speaks with an impediment because of it), who can't stop his arms and hands from twitching, and who can't straighten his fingers even when his karate teacher is really hounding him to (hello - karate chop!).  He is nowhere near the same as you.  He is a little boy who sees people with bigger disabilities and doesn't stare or gawk.  He talks to them like a person - not like a pet, or an invalid.  He sees people beyond their abilities or disabilities.  

People living with cerebral palsy struggle to do the things we take for granted, every day.  They need friendship, support and respect.  The last thing they need is criticism or bullying.    Talk about disabilities with your children, your co workers, your family.  It's not a dirty secret that we aren't allowed to discuss - get it out there and make it accepted!

Disabilites aren't something to hide, they are something to explore and understand.  We are ALL different - it's just that some of us get labels and some of us don't.  


*He kept getting back on because he had the support he needed.  The camp director gave him the horse with the least amount of girth.  Staff discretely helped him up and down without the other children knowing he was struggling.  He was praised for each improvement he made and encouraged to continue trying.  If he was allowed to skip horseback riding because of his disability he still wouldn't be able to ride to this day.  He took strength from the encouragement he received and combined it with his desire to be like the other kids and accomplished something I truly didn't think he could.  Good thing I didn't let on!  My attitude is just as important as his.  So is yours.  If you know someone with Cerebral Palsy and aren't sure how to interact with them, encourage them, discipline them, please visit the Ontario Federation for Cerebral Palsy.  http://www.ofcp.ca/index.php

Mini Peanut Butter Pies

 I was hankering for peanut butter pie, but didn't want a whole pie in my fridge.

  I was not craving moving up a pant size.  

Enter the mini pie.  

Can we make fun of my chocolate drizzling skills for a minute?  Someone help me with the drizzle, I need lessons!

I decided to make a few mini pies, to test how they freeze, to share with my friend (yes, I have a 

friend - don't laugh) and, really, to scratch the itch.  The peanut butter pie itch.

I've made the traditional pie, with whipped topping before (yes, lots of times) but I really hate using it.  It's so gross.  Whipped oil and sugar.  I can't stand eating that crap.  

Well, I can obviously stand it - I just really really don't like it.  It also means I don't make it more than once every few years, which isn't a bad thing I guess.  Oh well, I adjusted the recipe so I could make it without it.  I still used Jell-O, just as yucky.  Ha!  What I do for this pie I tell ya.  

Mini Peanut Butter Pie

Preheat oven to 350.  Prepare a muffin pan with liners (this recipe makes 12).  

1/3 cup melted butter

1 1/2 cups graham crumbs

1/3 cup sugar

Combine sugar, graham crumbs and butter in small bowl.  Each muffin paper will get 2 tbsp of graham crust.  Scoop 2 tbsp in each cup and when done, press graham firmly around sides and bottom.  Try to do this as evenly as possible.  

Bake for 4-5 minutes.  Don't over bake the crust.  A large crust would take up to 10 minutes and I (foolishly) over baked my crusts the first time.  Let cool while making filling. 

1 8oz package cream cheese

1 cup peanut butter

1 package of instant vanilla pudding (serving size 4, not 6 - they come in two sizes!)

1 cup of whipping cream

1 cup milk

Mix the cream cheese until smooth.  If you've left it out for a few hours, this is easily done by hand.  Add peanut butter and mix again.  Make pudding in a separate bowl.  You are NOT following instructions on box.  Mix one package of pudding with one cup of milk.  Add it to the cream cheese and peanut butter and mix well.  If you want to use Cool Whip, use one cup where I am using whipping cream.  Blend the heck out of these ingredients until the mixture is smooth.  

Use an ice cream scoop to evenly divide filling into each mini pie crust.  You should have just enough for each mini pie and for the kids to get a good lick out of the bowl.  

Refrigerate minimum 4 hours before serving.  You can drizzle chocolate on top, warm peanut butter, add whipped cream, etc.  Dress it up how you'd like and enjoy!  

Happy Baking!

*Bonus Blabbering*

The story of "the fattest thing I've ever said"

I was making this pie over Christmas.  My sister was in the kitchen with me.  

She has made this pie plenty of times.  

I began to soften the cream cheese and whip it with a fork and good old arm power.  

With sadness and shock she asked what happened to my beautiful stand mixer. 

I said it was fine.

That I like to mix things by hand because it was a little bit of extra exercise before eating something so unhealthy. 

We looked at each other. 

Silence.

Silence.

Laughter.

My face grimaced and I professed 

"That is the fattest thing I've ever said!"

Dance With The Devil

I wrote a decent sized post.  It was about my relationship with my credit card company; how I've managed to get them to "pay me" to use their card since they were foolish enough to issue it to me and how it's paying for an upcoming trip.

My husband said it read like a commercial for credit cards.

Delete.

I really think this could happen to me.  I keep
wondering why they let me take their money
year after year!

The thing is - I've been using a credit card for 7 years, and have paid interest once.  It was for $19.00.  I was on holiday and forgot to pay my balance online.  I could have cried!  It never happened again.

I used my credit card for very small things to build my credit rating (I didn't have a rating prior to the card).  After seeing the points add up, I began to use it for larger purchases, and things like my home and car insurance.

With the exception of that one interest payment, I have never paid interest.  The points I've earned are true rewards.

Up until now I've used the rewards for two things.  Theatre gift cards (how else is someone supposed to afford taking their family to the movies!?) and money towards my mortgage.  Boring.  I get a tragic, but truly satisfying thrill from seeing a balanced bank account.  It makes me happier than spending.  It really does.

Well, this time it's not for the movie theatre or money toward my mortgage.

It's for Africa.

I've got enough points to fly to Africa!!!

I knew I would eventually share I was going to Africa, but I really wanted to share how I am going.  I know a lot of stay at home Mom's struggle to keep the budget balanced.  Heck, a lot of double income households struggle to balance the books!  It's hard to live on less, and I don't want it to seem like I was flaunting my (non-existent) wealth.  That I don't know how hard day-to-day can be.  I know.  I live it every day.  I wear used socks.  Seriously.

So, I'm off to Africa in 9 days!  I feel very strongly about spending money on things that matter.  Seeing plays.  Taking trips.  Adding experience to life.  Buying "stuff" doesn't make the list for me.  Believe me, I love stuff!  I have to stay away from it so I don't buy just a little thing here and a little thing there.  Little things add up.  Sometimes they add up to an extra mortgage payment…. and sometimes they add up to a trip to Africa.

Carmelitas

The title of this post could also be: 

The only thing stopping my husband from being vegan…

Oh Carmelitas…  How I love and hate thee.

So tasty.  So easy to make.  So tasty.  

I think I made these off of a Pinterest whim.  I know a lot of people say mean things about Pinterest because it is apparently trendy to post things and not try them - well, I actually try a lot of things I pin to my wall.  I know other people who do too.  Yes, they're related - so maybe we're all the odd ones out, but… oh yes, we're always the odd ones out.  It all makes sense.

This recipe is originally from a blog called, Lulu the Baker.  I'm not sure if it's her recipe, but that's where I found it.  I'm going to be honest - I've tweaked it here and there to see if improvements could be made, but it needs no improvement.  

Switching the ingredients to gluten free was for my son, so he could be part of the sweet sweet torture that is smelling the Carmelitas baking and waiting 6 or more hours to finally taste them!  

If you want to swap out the gluten free ingredients for run-of-the-mill, already-in-your-cupboard ingredients, knock yourself out!  The measurements are all the same, you'll be just fine.

Gluten Free Carmelitas

Preheat oven to 350

3/4 cup butter (melted)

3/4 cup packed brown sugar

1 cup gluten free flour mix (I used Bob's Red Mill All Purpose Blend)

1 cup oats (Bob's Red Mill gluten free oats)

1 tsp baking soda

Combine dry ingredients in a small bowl, add butter and mix thoroughly.  It will be kind of crumbly, don't fret.

Press half the mixture into an 8X8 glass pan lined with parchment paper.  Bake for 10 minutes.

This doubles nicely in a larger pan, and I've even done 1 + 1/2 recipe to fill an 11X7 pan.  All variations have been excellent - just slightly thicker or thinner crust.

1 package of Kraft Caramels (32 little squares), unwrapped* 

1/2 cup heavy cream (whipping cream)

While bottom crust of squares are baking, unwrap the caramels and add them to a medium saucepan.  Warm the cream and caramels together on medium (medium high if you pay attention) until all the caramels are melted.  Stir frequently.   Once it's consistently smooth, set aside. 

*You can make this recipe with homemade caramel.  I haven't tried yet, because I've made homemade caramel and it takes an hour!  I also don't think I could resist eating a grand portion of the caramel before it made it to the squares…. so I've taken the kraft caramel route thus far*

Once your crust is out of the oven - let it cool for a few minutes.  

1 cup chocolate chips

Evenly spread chocolate chips over crust.  Carefully pour warm caramel over the chocolate chips.  It should level itself out, but it doesn't hurt to pour it evenly now does it?  Crumble the remaining oat mixture over the top.  Take a nice handful, and crumble it evenly over the whole thing.  Don't pat it down or try to make it smooth.  

Place pan back in the oven for another 20 minutes.  

This will take FOREVER to cool down.  FOREVER.  Just make it at night and leave it for the next day.  Don't torture yourself by checking the pan to see if it's cooled yet.  It won't be cool.  Don't put it in the fridge.  Don't go crazy.  Just be prepared to wait.  

I place a clean dishtowel over mine for the night, and have an unstoppable reason to get up early the next day.  These freeze wonderfully, so go ahead and make a batch - cut them up and save some for the next time you have company coming by.  They always impress and are truly one of the best squares I've had the pleasure of tasting.  Tasting again and again and again……

Happy Baking! 

My face is kicking off the New Year - Selfie Fridays!

It's the new year, and that means Selfie Fridays will have to come back!  They may not be EVERY Friday (unless you scallywags submit more pics instead of just laughing at me!) but we will still have Selfie Fridays.  I can't give them up.  They're so much fun.  

Traditional image for Selfie Friday.  The "good" shot and the reality shot.
I would caption the first pic something along the lines of me filling every stereotype people like me get.  Yes, I'm drinking veggies from a mason jar for breakfast.  The second shot is why I wore sunglasses the whole time I was out!  Poor explode-y face.  

I'm doing a solo selfie week, as my face has exploded and it's too funny not to share. I am a little stressed out.  The last few days have been hilariously stressful.  I usually eat my stress.  

Haagen Dazs is the bandaid for my soul.  

This is the start of my face going crazy.  Believe me, I don't rub the itchy spots.  It just gets red, hot, swollen and SOOOO itchy.  It also makes me wrinkly?  Wrinklier?
I'm making up words now. 

There have been times in my life when I choose smoking.  When I choose chips.  When I choose an unhealthy combination of many things.  For the last few years it's been Haagen Dazs.  

I'm planning a trip and I don't want to sugar & carb withdrawal on my trip, so I'm doing withdrawal now.  Eating healthy, a few juice cleanse days, etc.  That means when stress strikes - no Haagen Dazs!  Now, this has happened before.  During Lent last year, my husband and I had an absolutely mental Lent resolution and when stress took over my body and I couldn't deal with it the way I normally do - my face exploded.  It lasted for more than 8 weeks!  Hopefully this round doesn't last that long, but if it does, what can I do?  Not a whole lot.  Well, laugh.

Hopefully I don't get any more misshapen than this!  

So…. laugh at my face.  It's ok, I have no problem with you laughing at me.  That's the point of Selfie Friday!   

Listen, I know this isn't the end of the world.  Believe me, I know.  There are people who have REAL problems.  There are wonderful human beings who live with deformities their whole life and are amazingly beautiful people because of it.  I post bad pictures of myself (and others) on Fridays and this week I just happen to have a very swollen and red face - perfect!    

Happy Friday my lovelies,

Join in our next Selfie Friday and submit your pictures!

Here are some pics from 2013 to inspire you……

Be Glad it's YOU

I've had two babies in the NICU.  The trauma of seeing your beautiful newborn attached to life support, breathing apparatus, IV's in every appendage, can leave a wound that never truly heals.

My darling boy at 3-4 weeks

While my second NICU baby was hospitalized, I felt angry every time I saw a healthy baby.  Every time I saw a pregnant woman.  I would instantly judge them, and think to myself - they don't deserve their baby as much as I do.

It's hard to admit that's what I thought, but it's the truth.  My brain and my heart aren't always in synch.

I would see a newborn crying in their carseat in the grocery store and want to take the child out, comfort him/her and scold the mother for not knowing how lucky she was.  I would see pregnant women outside the hospital smoking, and want to scream "I did everything right and have a sick child - your child will probably be healthy and you don't even care enough to quit smoking!!!"

These thoughts didn't help me.  I knew they were wrong, and tried being extra kind to the women I was secretly loathing.  Kindness is always the answer, by the way.

I'm writing this to say to all the Mothers like me, I'm glad it was you.  I'm glad it was me.  

A week after being discharged from the NICU we were back in the hospital with heart failure.  When I was in the PICU (Pediatric Intensive Care Unit) there was a darling little girl in the room next to us.  During our 8 day stay, I saw her mother once.  She was there for half an hour.   That precious 11 month old girl was in a crib, in her room, by herself - 24 hours a day.  No Mommy singing to her.  No one letting her out of her crib to play with the toys that littered the room like a sad reminder of the life she should have been having.  Nurses would chat with her when they were checking stats, administering meds, etc. but they were busy with so many patients they couldn't devote much time to her.  

A volunteer came to my room, offering to cuddle my baby if I wanted to leave for a shower or take a lunch break.  I politely declined, but asked why she wouldn't be in the room next door with the little one who was always on her own.  She informed me that her mother forbid others to go in and play with her daughter.  She didn't want anyone else bonding with her little girl.  

I cried.

I stayed with my baby, night and day, and my other children would come visit us during the day.  Their hearts broke for the little girl next door.  She was in isolation, but that didn't stop them from standing at her door singing songs, and dancing to entertain her.  My two year old had to be pulled from that doorway.  Forced away.  She wanted to sing and play peek-a-boo non-stop with the baby on her own.  My older sons cried for her, unable to understand how something so wrong could be allowed in plain view. 

I'm not sharing this with you because there was a happy ending.  I don't know what happened to that little girl.  I'm sharing this with you to help ease the struggle some of us with sick children have.  Be glad it's you.  A Mom who puts everything on hold to care for their poorly child.  A Mom who cares enough to sit sleeping upright in uncomfortable hospital chairs.  A Mom who is there to listen to doctors, specialists, nutritionists, nurses on how they feel your little one is doing.  

Be thankful that a sick child, who needs love more than ever, has YOU.  

It's hard to hold down a little arm while a needle goes in.  It's heartbreaking to watch a little one be sedated to help them deal with the pain they are experiencing.  It's physically exhausting to tend to the needs of someone who is helpless, letting your needs come secondary or not at all.  

It's more difficult to know that there are children without a Mom like you.  Alone for bedtime.  Alone for needles.  Alone for doctors coming in and out.  

Take a deep breath Mommies.  You are the best thing that ever happened to your child.  You know them better than any doctor, you care for them better than any nurse, and you love them like no other.  Be thankful your child has you, and keep up the good work.  

- I know there are many fathers who can relate to this, who care for their children when they are sick.  My husband is one of those fathers.  I am not trying to exclude you.  I wanted to address moms.  There is something deep within the heart of a mother that feels responsible for their child being sick.  Something we ate during pregnancy.  Something we did.  Something we thought!  Secretly festering in the depths of our hearts is the fear that we brought a helpless child in to this world to suffer.  We can barely admit it to ourselves, let alone any other living soul.  I know you fathers are the ones holding things together.  Taking the other children to the library so they have some "normal" in their lives.  Getting oil changes.  Managing life so that Moms like me can stay by their child's side.  You are every bit as important as the Mom - believe me, you are.  I just wanted to reach out to who I know, who I can definitely say - yes, I relate to that.  If my husband ever writes a post like this, he can address it to Dads and Dads only.  Keep up the good work Daddies - I know this world would crumble without decent fathers who do the right thing when it is the hard thing.  -






If you can relate to this story, be sure to read
 The Burden of Fear