Inclusion: Celebrating the Unity in Our Individuality

Inclusion has conceptually been important to me since I can remember. The older Chloe gets, however, and especially the more she recognizes her differences and feels sad when she is left out, the more passionate I am becoming about inclusion! When I heard this song awhile back, it struck that chord within me - how truly special we all are and how much those differences should be embraced and celebrated.... that's right I said embraced and celebrated, not just accommodated. I put together this little video of children of all different abilities, personalities, talents, and special sparks. I dare you to not smile big while you're watching it!

I am one in a billion
I am the only one that I can be
That is something beautiful
I see the world like nobody else can see
I am the someone that nobody else can be
I'm the original, so irreplaceable
No matter who I'll be and who I've been
I am perfect just the way I am

I am one in a billion
I am the only one that I can be
And that's something beautiful
And I am a light that's shining
And I'll sing the song that only I can sing
Yes, that is something beautiful
It's something beautiful
It's something wonderful

I'm only human just like anyone
But I'm the only me under the sun
Just like a snowflake, no two are the same
And there's unity in our individuality
I am perfect just being me

I am one in a billion
I am the only one that I can be
And that's something beautiful
And I am a light that's shining
And I'll sing the song that only I can sing
Yes, that is something beautiful
It's something beautiful
It's something wonderful

Everybody is somebody that nobody else can be
Everybody is somebody that nobody else can be
Everybody is somebody, that's who I am
Everybody is somebody that nobody else can be
Everybody is somebody that nobody else can be
Everybody is somebody, that's who I am

I am one in a billion
I am the only one that I can be
And that's something beautiful

I am one in a billion
I am the only one that I can be
And that's something beautiful
And I am a light that's shining
And I'll sing the song that only I can sing
Yes, that is something beautiful
It's something beautiful
It's something wonderful

That's something beautiful

Changed for Good

 I'm sure all special moms can say that we have been changed for the better because of our children. 

I can't help but think of Caleb during several parts of my favorite song from Wicked: 

It well may be 

That we will never meet again 
In this lifetime 

So let me say before we part 

So much of me 
Is made of what I learned from you 

You'll be with me 
Like a handprint on my heart 

 ...But because I knew you, 

I have been changed for good.

Your Calling as Guardian

I have a serious plea for all of you! 

Appreciate your calling as a mother. Appreciate that you are GOOD at it! Accept that it means you may not always be perfect at other things you might think you should do because you were meeting your ultimate call with such a full commitment. 

Didn't get the vacuuming done? Left the dishes in the sink over night? Didn't make it to the gym? In regard to any of those little things nagging you...Ask yourself this: Is THAT your calling? Is THAT your purpose? In comparison to caring for your child who requires a little more care, is it that important? Pretty sure the answer is a resounding NO. You have been called to be a special needs mama! It is a beautiful call and you are good at it! RESPECT yourself for meeting your calling. Allow yourself to be imperfect at the other "stuff" and recognize that it is all it is... just stuff. Please? For me? Thanks, guys!!! xoxo

Guardian Lyrics

Alanis Morisette

You, you who has smiled when you're in pain

You who has soldiered through the profane

They were distracted and shut down

I'll be your keeper for life as your guardian

I'll be your warrior of care your first warden

I'll be your angel on call, I'll be on demand

The greatest honor of all, as your guardian

You, you in the chaos feigning sane

You who has pushed beyond what's humane

I'll be your keeper for life as your guardian

I'll be your warrior of care your first warden

I'll be your angel on call, I'll be on demand

The greatest honor of all, as your guardian 

Now no more smiling mid crestfall

No more managing unmanageables

No more holding still in the hailstorm

Now enter your watchwoman

I'll be your keeper for life as your guardian

I'll be your warrior of care your first warden

I'll be your angel on call, I'll be on demand

The greatest honor of all, as your guardian 

 

How Bad We Need Each Other

 

The very essence of this blog is wrapped up in these lyrics. Honestly, what would we do without each other!?

I have seen special needs mothers/parents come together for the simplest of things, like where to buy onesies or which sunglasses will actually stay on.... to the most complicated and heartbreaking moments, like facing a grim prognosis or holding hands at a child's funeral.

It is devastatingly beautiful how much we need each other

and that we actually have each other to count on.

How Bad We Need Each Other

by Marc Scibilia

 Life is too far to walk alone 

You can't do it on your own 

It's like bare hands digging through stone 

And if things go down much steeper hills 

Even money won't pay these bills 

And time will show 

That people gonna be ok 

Storms never come to stay 

They just show us 

How bad we need each other 

How bad we need each other 

And the trials of today 

They are signs along the way 

To remind us how bad we need each other 

How bad we need each other 

You know I can get so high on myself sometimes 

I keep on drifting a million miles from this planet 

But what a shame it would be to look back on this life 

And realize that I've taken you and you for granted 

That people gonna be ok 

Storms never come to stay 

They just show us 

How bad we need each other 

How bad we need each other 

And the trials of today 

They are signs along the way 

To remind us how bad we need each other 

How bad we need each other 

And I, I can't see what's a mile around the bend 

I do not know where this world is headed or where it may end 

But you gave me this smile 

So I threw away my frown 

And I ain't gonna pick up 

What I just put down 

That people gonna be ok 

Storms never come to stay 

They just show us 

How bad we need each other 

How bad we need each other 

People gonna be ok 

Storms never come to stay 

They just show us 

How bad we need each other 

Don't you know? 

How bad we need each other 

We oughta take a little time to sit 

Because the wisest men forget 

How bad we need each other 

Don't you know? 

How bad we need each other

It Might Be Hope

We have walked these halls many times and are so thankful for the amazing staff at Primary Children's Medical Center. Mercy River and KSL recently teamed up to make this new video. It was so close to my heart... 

It Might Be Hope
by Mercy River

You do your work the best that you can
you put one foot in front of the other
life comes in waves and makes its demands
you hold on as well as you’re able

You’ve been here for a long long time

Hope has a way of turning its face to you
just when you least expect it
you walk in a room
you look out a window
and something there leaves you breathless
you say to yourself
it’s been a while since I felt this
but it feels like it might be hope

It’s hard to recall what blew out the flame
it’s been dark since you can remember
you talk it all through to find it a name
as days go on by without number

You’ve been here for a long long time

Hope has a way of turning its face to you
just when you least expect it
you walk in a room
you look out a window
and something there leaves you breathless
you say to yourself
it’s been a while since I felt this
but it feels like it might be hope

Brick by Brick

I just heard this song, Brick by Brick by Bess Rogers. It made me think of all the little, almost unnoticeable, changes that our daily efforts produce for our special kids! Of course, this is the case with all children (and all adults, for that matter), but when other kiddos are reaching and surpassing milestones, we cherish and celebrate the "inchstones"! And, oh boy is it worth it!!! 

Three steps forward and two steps back we go, 

You try and push harder, they push right back, I know, 

That time moves fast and change moves painfully slow. 

It's hard to see the shift when you're so close. 

Brick by brick, we are building. 

You won't see for the longest time, 

We're building a new life. 

You plant a seed and wait for it to grow. 

They hate it now but they're too scared to know, 

That their children's children will sit underneath it's shade, 

And their children's children will bask in the love you made. 

Brick by brick, we are building. 

You won't see for the longest time, 

We're building a new life. 

It won't show for the longest time,

Little Bird

 

 I was listening to this song with a tender heart and it made me think of our sweet little ones. Thought I'd share :)

  

Band is on the run 

You're my little one 

Waiting in the wings 

So I whisper in your ear 

Let's get away from here

When the day is done 

I hear who'll wait 

Without some day 

Steady cause that day will come 

Now my little bird Get along 

You're the heart of these songs 

And when it rains so hard 

I let it open up the stars 

And you can climb All the trees 

Tell the world what you can see 

Cause you can see so far 

 I listen to all the very young 

Turn around they're gone 

Seems so suddenly 

And kindred hearts will never age 

The singer on this stage 

Wanting to go home 

I can hear that slow way 

Without sometime 

Following the things you've done 

But you know for now 

There's a scene that keeps bothering me 

When you're asleep at night 

And it's quiet and it's right 

And then you're grown 

And you're gone 

Like a bird from my arms 

And when I wake and see 

That you're down there fast asleep 

Now my little bird Get along 

You're the heart of these songs 

And when it rains so hard 

I let it open up the stars 

And you can climb 

All the trees 

Tell the world what you can see 

Cause you can see so far 

Now that's a way off 

It's like the summer's on the run 

It's like the rain keeps coming on 

But we're not there yet 

Cause you're fast asleep

 

Bigger Than My Body

 

I've heard this song approximately one zillion times before, but the other day I heard it and thought of Chloe. My biggest fear is that people do not see her the way I see her. They see a frail body in a wheelchair and make assumptions about her ability to understand or her potential (or lack thereof). I think I might print these lyrics and hang them from the back of her wheelchair. Because my beautiful child is SO MUCH BIGGER than what most people can see!...

Someday I'll fly

Someday I'll soar

Someday I'll be so much more

Cause I'm bigger than my body gives me credit for

Bigger Than My Body by John Mayer

The Miracle

Happy Easter from kidz!

This beautiful song is available for free download here.

Impossible Dream

We're the Lucky Ones

Today when I was looking at Chloe

dressed as a leprechaun

in her wheelchair,

I was overwhelmed with this feeling

of how LUCKY I really am

for HER, for THIS SPECIAL LIFE.

  

Take a moment today to remind yourself

how LUCKY you are!!!

Wonder

Oh, I believe
Fate smiled and destiny
Laughed as she came to my cradle:
"Know this child will be able,"
Laughed as my body she lifted
"Know this child will be gifted,"
With love, with patience and with faith
She'll make her way.

I Will Show You Love

Kendall Payne - I Will Show You Love

I will show you love like you've never loved before
I will go the distance and back for more if you just say the word

You will come alive again and call the trying times your friend
The pain that you have suffered through will never get the best of you
You will hope in something real that won't depend on how you feel
When you call my name then I will answer, answer

I am on your side though the wind and waves beat against your faith
You were on my mind when the world was made
Trust in me my child, Trust in me my child

Walk out on the water where you have no control
So scared to death of failure you sacrifice your soul, please let that go

You have climbed an uphill road, You have worn a heavy load
You have cried through endless nights and nearly given up the fight
Watched your dreams like falling stars the heartaches made you who you are
Now looking back you see that I have always been there

Where you gonna hide? Where you gonna hide from Me?
Where you gonna go? Where you gonna go that I can't see?

I have heard you cry and it breaks my heart for I love you so
I would never lie, this is not the end there is still a hope

Try This Fresh Perspective On Your Strengths & Emotions

I went to a women's conference a few weeks ago and I keep thinking about one of the talks. It really resonated with me and I wanted to share it with all my kidz readers. I hesitated to do so, though, but it just keeps nagging at me and I cannot put it off any longer. I hope you can be touched by this like I was. It really helped me accept and understand some of my feelings about a lot of things! I'm just doing a re-cap from my notes about the talk given by Julie Hanks, a clinical social worker/therapist as well as a singer/songwriter. If you've ever wondered where your miracle is and can relate to the lyrics of her song, then the message of her talk is for you!

Overwhelmed and underpaid

Morning comes too soon

Running late and on my plate

A million things to do

Got a baby cryin'

Another trying to find the other shoe

When I open my eyes the dam will break

Their need will flood my room

My mother's sick

And I'm late to pick up kids at school

I need to clean, can't fit in my jeans

The fridge gives no comfort food

You made wine from water

And raised up Jairus' daughter from her bed

Filled the empty fishing nets

And with some loaves and fishes fed a hungry crowd

Make enough of me to go around

Multiply and magnify this tiny little life of mine

Enlarge me and expand this heart and fill it with divine

My heart is cold, nothing grows but thistles and some thorns

They choke the light and shrink the vine, I need to be reborn

You made wine from water

And told a scarlet daughter, 'Sin no more.'

Surrendered to the garden,

Through thorns and nails you pardoned the angry crowd

Make enough of me to go around

 Many women live by several myths:

• Taking care of myself is selfish
• I should always be happy and perpetually sweet
• Acknowledging my strengths is prideful

These things are NOT true! This is truth:

• We have to take care of ourselves first so we can take care of others.  (Think of the oxygen mask in an airplane).
• We need to acknowledge all of our emotions so we can identify the source of those emotions, manage them, and use them for good purposes.
• It is ultimate humility to acknowledge the good of God in yourself. Understanding and owning your divine attributes and divine purposes is one of the highest levels of gratitude. Here's a short clip from Julie Hanks talking about accepting your strengths and improving your confidence:

Start to think of emotions as E-MOTION ---> energy in motion. Emotions are to be used as a guide in our lives and to help us understand our true, authentic self. We don't have to feel better, but get better at feeling and understanding those feelings. Don't suppress your emotions. Instead, ponder on them, then use them to direct your actions and interactions so you can be a source of joy as well as find joy for yourself! What brings you joy is information about your life's mission, so prioritize the things that bring you JOY!

Oftentimes our to-do list doesn't get checked off because we spend time taking care of other things that come up, like talking to a friend who is going through a hard time, doing a craft with our child, or going on a walk because the weather was so nice and it made us happy. Then we beat ourselves up when we look at the unchecked items on our list. Stop that!!! Instead, make a "Ta-Da!" list at the end of each day. This is a list of good things you did, those things that really are most important. Acknowledge your accomplishments, do not dismiss them because you didn't achieve the trivial tasks around the house. See and appreciate the good within yourself and all the good that you do each day!

I hope these concepts touched even one other person as much as they touched me. As I have applied this fresh perspective on my emotions and strengths, I have seen a tremendous difference in my life -- an increase in happiness! And you special needs mamas definitely deserve a little more happiness!

 

There Can Be Miracles

In memory of Whitney Houston, I wanted to share this song that came to mean a lot to me in those first days of Chloe's diagnosis. My heart feels heavy, but also full this week. There is so much heartache for many I know and love, but there are also miracles and love and beauty.

Many nights we've prayed
With no proof anyone could hear
In our hearts a hopeful song
We barely understood

Now we are not afraid
Although we know there's much to fear
We were moving mountains long
Before we knew we could


There can be miracles, when you believe
Though hope is frail, it's hard to kill
Who knows what miracles you can achieve
When you believe, somehow you will
You will when you believe


In this time of fear
When prayers so often prove in vain
Hope seems like the summer birds
Too swiftly flown away

Yet now I'm standing here
My heart's so full I can't explain
Seeking faith and speaking words
I never thought I'd say

There can be miracles, when you believe
Though hope is frail, it's hard to kill
Who knows what miracles you can achieve
When you believe, somehow you will
You will when you believe


They don't always happen when you ask
And it's easy to give in to your fears
But when you're blinded by your pain
Can't see your way straight through the rain
A small but still resilient voice
Says hope is very near

There can be miracles
When you believe
Though hope is frail
It's hard to kill

Who knows what miracles,you can achieve
When you believe, somehow you will
somehow you will
You will when you believe

You will when you
You will when you believe
Just believe...in your heart
Just believe
You will when you believe

No Fight Left

It's hard to tell if my eyes are open
When all I see is dark
And it's easy, it's easy to lose my step
To lose my step

There is no fight left on the inside
But maybe that's where I should be
I've given up trying
I'm giving it all to you

And I used to dream of a life so lovely
There'd be no room for tears
Now letting go, yeah
Letting go is the hardest part
It's the hardest part
There is no fight left on the inside
But maybe that's where I should be
I've given up trying
I'm giving it all to you
Ohhh...

There is no place I can go
Where you don't already know
How to reach right down and pull me out
I need you, I need you, I need you

There is no fight left on the inside
But maybe that's where I should be
I've given up trying
I'm giving it all...

There is no fight left on the inside
But maybe that's where I should be
I've given up trying
I'm giving it all, yeah
I've given up trying
I'm giving it all, yeah
I've given up trying
I'm giving it all to you

Control

The cut is deep, but never deep enough for me
It doesn't hurt enough to make me forget
One moment of relief is never long enough
To keep the voices in my head
From stealing my peace

Oh, control
It's time, time to let you go

Perfection has a price
But I cannot afford to live that life
It always ends the same; a fight I never win

Oh, control
It's time, time to let you go

I'm letting go of the illusion
I'm letting go of the confusion
I can't carry it another step
I close my eyes and take a breath
I'm letting go, letting go

There were scars before my scars
Love written on the hands that hung the stars
Hope living in the blood that was spilled for me

Oh, control
It's time, time to let you go...
Control
It's time, time to let you go

One Day You Will

I just want to shout these lyrics from the rooftop for every special needs parent facing a new diagnosis to hear.

Salt Lake City Rain

I wanted to share this song for anyone who has suffered the loss of a child, or faces the reality of terminal illness. This song was written about a special little boy named Gavin. You can find more about his story here.




Song & Lyrics by Ryan Tanner

Love of my heart, why must we part?
I said a prayer on a heavenly start
Give me this day shoulders of strength
To carry the burden of time taken away

I woke last night to a voice in the hall
I heard you calling my name
I rushed to meet you, found nothing at all
All I could hear was the Salt Lake City rain

Love of my heart, where do I start
To patch up the pieces of the old-fashioned heart?
When will it turn, what lessons could we learn?
I'll be counting the days 'til the sun will return

I woke last night to a voice in the hall
Thought I heard you calling my name
I rushed to meet you, found nothing at all
All that I heard was the Salt Lake City rain

The Gift of a Mother's Love

I don't know which is greater -- the gift of having a mother or the gift of being a mother....

A Mother's Love - Mark Masri lyrics




Thank you for watching over me
All of the sleepless nights you lay awake
Thank you for knowing when to hold me close and when to let me go
Thank you for every stepping stone
And for the path that always leads me home
I thank you for the time you took
To see the heart inside of me

You gave me the roots to start this life
And then you gave me wings to fly
And I learned to dream
Because you believed in me



There’s no power like it on this earth
No treasure equal to its worth
The gift of a mother’s love

Thank you for every sunlit day
That fill the corners of my memory
Thank you for every selfless unsung deed
I know you did for me
Thank you for giving me the choice
To search my soul till I could find my voice
And I thank you for teaching me
To be strong enough to bend

You gave me the roots to start this life
And then you gave me wings to fly
And I learned to dream
Because you believed in me
There’s no power like it on this earth
No treasure equal to its worth
The gift of a mothers love
I thank God for a mother’s love