Thursday, February 12, 2015

Deep Words of Wisdom .....

I follow many many Autism pages on Facebook.  Autism Will Not Define My Son's page shared this, which came off a blog by Rachel over at Finding Joy. I copied the words, and am adding photos of my kids, like she did her son.  Hop over there and check out the beautiful pictures of her boy too, and send some love for this amazing piece!!  I added a few of my own at the end, and apply this to not just Mom's but Dad's too.  Being a Parent is hard, and you are ALWAYS second guessing yourself.  (A lot of these are very much Mom related though - lol) 

when you feel like you don’t make a difference remember this. . .

The way your child’s eyes light up when you pick them up from school.
How you know just the right way to tuck sheets up and where to put the kisses goodnight.
The infinite number of toilet paper rolls, paper towel rolls, or anything else that needed to be replaced that you replaced without announcing to everyone you replaced them again.

The silly pictures that you take with them just because.
The time you wouldn't leave the doctor’s office until you had an answer.
The hours spent scouring the internet trying to find an answer.
The parenting books that collect dust on your shelf because you don’t need them anymore.
All the shirts with spit up on the shoulders and snotty nose wipes left there because you just hugged them when they needed you.
How you stay up late and wash clothes that are needed for the next morning.
The hours pacing around and around and around with a colicky baby.

The hours spent trying to figure out how to deal with a colicky baby.

Push after push after push on the swings on the park.

How you can Macgyver almost anything.
The projects helped with – science, history, book, and on and on and on and on – and how you almost kept your patience  the entire time.

All the board games, legos, dolls, and other things you played again and again.
When you felt alone or tired and just wanted to stay home and you still loaded them in the car and drove and drove and drove.
The times cleaning the wrappers, junks, paper and all from the car that just gets left.
All the beds you’ve cleaned underneath.
That you have the passwords to every kid’s site memorized.
That you remembered to write down the one’s that you forgot.
All the questions you have answered.
Let me repeat that – all the millions of questions you have answered that begin with why.
All the times you’ve uttered just one bite or just one try or just one pedal or any time you’ve worked and worked and worked to help them learn.

The shirts tucked, coats buttoned, shoes tied, and pants zipped.
Your hand in their hand as you cross the street.
You running behind a bike as they finally get their courage leaving you in the dust yelling look up look up and you did it you really did it!! 

The knees bandaged under your hands.
The tears wiped away and hands in your faces and words of you can do it again said.
Your hand in their hand as you say goodbye and leave them at a college thousands of miles from home.
The times you’ve snuck in and just watched them sleep.

All the books, toys, and things that are all over your home that make a mess but make you a family.
The tears that you’ve shed behind the bathroom door.
The tears that you’ve shed in the car.
The tears that you’ve shed standing at the sink while someone pulls at your leg.
The tears that you’ve shed because you want to be a good mom.

How only you can find the missing item that vanished.
The notes written to the teacher.
The times  spent sitting in a chair meant for a seven year old across from their teacher.
The times spent filling out college applications and you felt brave.
All the balls thrown, piano keys pressed, markers colored, and times spent investing in them.

The worry.

All the toilets scrubbed, hair pulled from drains, vomit cleaned and other gross tasks that you just do.
The fact that dandelions  (or any flowers really) are picked and given to you.

The fact that you put those dandelions above your sink.

The sweet hugs in the morning as you wake your slumbering little ones.
That even when they’re old that when they’re sick they still just want mom.
That you show them the rainbow every time after it storms.

The times you sit at the table helping with homework and it feels like torture but you just sit there.

When you give extra food because they’re still hungry even though you’ll be hungry.
The patience it takes to grocery shop with a toddler in tow.

The super duper patience it takes to grocery shop with a toddler and a newborn in tow.

The extra super super patience it takes to shop with a tween.

All the times cooking in the kitchen making dinner out of nothing.

Haircuts, nail trims, baths, and all that grooming stuff.

The times you sit in the haircut place and tear up when your five year old returns looking so much older.
How your hug and kiss makes whatever get better.
The times you curled up in that toddler bed when they had a bad dream.
How you sleep half asleep in case they wake up and call your name.
The lack of sleep that you’ve learned to survive through.
That you’re the only one who can pack lunches, get them ready, and out the door in 8.3 minutes if needed.
The times sitting on the sidelines.

The times where you say I believe in you when they had forgotten how awesome they truly are.

The courage to deal with slammed doors and I hate you’s and all of that hard stuff.
All the times when you stay up late waiting waiting waiting for them to return.
All the days spent worrying, trying, stumbling, and trying again.
The fact that on their phones you’re the only one labeled mom.
All the clothes that you’ve made go from inside out to right side in.
The I love you’s said over and over and over.
The fact that you are the only one in the whole world your kids call mom.
That even though the list is full of normal that it is extraordinary.
You make a difference.
Don’t ever doubt that.
You.  Are.  Wonderful.

I have a few more I want to add .....  
All the time in the ER with broken bones.... 

The family trips that were planned meticulously and then didn't happen that way at all.

Learning how to fly by the seat of your pants and make those unplanned situations look like it was nothing big.
The calls to Poison Control.
The messes cleaned up because of curious little kids.

The silly pictures you get because they just won't be serious.

The first birthdays ....... that you managed to get through, without bursting into emotional tears.

The heart attacks you have over moving this guy ......... or when the forget monster makes you panic ..

The hours you spend scouring the internet trying to find ideas to help the Potty Training process be successful and not the nightmare it was...

How you let them help you cook, even though it would get done so much faster if you just did it yourself.

The heart attacks you can have walking into the room where your child is supposed to be taking a nap!!  (Or you just left them a minute ago.)

There are so many more.....

But just remember, the countless Hugs and Kisses and "I LOVE YOU" that crosses their lips is worth it.  It makes everything that could go wrong, has gone wrong, hurt your feelings, made you feel like a bad parent .... melt away.  Because you know you are doing your best, and that's all that matters to them.

Sunday, February 8, 2015

Feeding Tube Awareness Week

Today is the start of Feeding Tube Awareness Week!!

This is our first year.

Nathan just got his G-Tube on June 24th, 2014.

My favorite part of being a Tubie Mom is this ......... all the crazy mistakes that happen.

Okay, I'm lying, it's my least favorite part.

But seriously - how many times do you need to "forget to close the med port" before you learn??? How many times does it take to be BATHED in medicine before you finally figure out you have to check it ten times (literally) before you pour the meds in. And when the med ports take on a mind of it's own and opens on its own...

I mean - REALLY??? Then let's throw in the beeping in the middle of the night of kinked lines because they are laying on or wrapped up in the tube .... or the random mystery problems with the pumps.... or how about things are just not working and you just ... can't ... figure... it ... out.

Really - my favorite part is how well it's working for Nathan. Probably too well.

Nathan - June 24, 2014 - right before G-tube Surgery

Nathan - January 2015

Nathan's weight - June 2014 - prior to surgery .... (bottom weight is his brother Keadyn's)

February 2015 weight for Nathan .....

It's made a HUGE HUGE HUGE difference for him!!!

There are a lot of sites for Tubie kids accessories.  We got our first pads through Patchwork Peddler (link for free sample! and leads to their website) and even though we had trouble getting our initial order - we got it and they made up for the mistake :)  Which we were grateful for :)  These are amazing pads!  They are super soft on the inside (against the belly) ....   we also had fun doing trial and error washing them - because we don't have a washing machine.  So I had to learn to wash them by hand, without using fabric softener.  (Because fabric softener can actually make it less absorbent.)

Tubie Friends is an amazing organization which will send your child a stuffed animal with a G-tube (or JG-Tube, and other medical procedures) ... to make things a little easier.  We got Nathan one prior to his surgery.  You don't get to pick out the animal, it's a bit of a luck of the draw.  This is Nathan's though, he named it ARMY.
And if you homeschool you can use it for a science project!!!  Try to suspend the medication!!  I kept failing ...... not that failing isn't freaking cool too ....

But one night I got it!!!!

There is the million supplies that come with having a Tubie!!  

But it's all about the attitude!!  Make it fun!!  Keep the smiles going!!!

It wasn't an easy first 7 months ....   but it has really been worth it!

And we have fun with the bags!!