Showing posts with label Inspiration. Show all posts
Showing posts with label Inspiration. Show all posts

Sep 12, 2013

Purchasing "things"

I did not write this.  Nor did I know Mitchell.  But I will tell you that this little boy and his family have forever changed my life.  I read his life story on their facebook page (https://www.facebook.com/#!/mitchellsjourney?fref=ts) and it is like they are looking straight into my heart.  As a mother of a chronically ill child who has a incurable terminal disease, these exact thoughts have crossed my mind many times.  But then I thought it is a good theory for everyone to live by.  Just something to ponder.  Here is the excerpt from Mitchells Amazing Journey on FB. 
"
MOMENTS THAT MATTER
Two days before Mitchell was admitted to the hospital for heart failure we decided to take our kids sledding near Park City. In my entire professional career, work was never more demanding than it was at that particular time. But I decided to delegate tasks and invest energy in my son, who I sensed was about to get very, very sick. If only I knew how fatally sick he would soon become. But we didn't know …. I just sensed time was running out. And nothi...ng else mattered.

Sledding that afternoon was so much fun. Mitchell had the time of his life. And when everyone was cold and tired and wanted to go home, Mitch asked to go on a few more runs … which we did. His appetite for life and adventure was nearly insatiable – which made his diagnosis of Duchenne Muscular Dystrophy an even greater tragedy and bitter irony.

Later that evening, after the sun had set, we drove into the valley for pizza and by that time Mitchell was beginning to get sick – the kind of sick you don’t recover from. The kind of sick that kills you. At first the signs of heart failure were invisible. He simply didn't eat anything. He just sat there with a smile on his sweet face. As often as we asked him to have some of his favorite pizza, he turned it down saying he wasn't hungry. We even ordered an extra pasta dish we were sure he would love, but he turned that down, too. We had no idea his heart was becoming catastrophically sick.

What you see here is a capture of the last physical adventure Mitchell took in mortality.

I had a Stake President (a leader in my church) who once said in a meeting: “Don’t ever apologize for taking your kids on vacation or purchasing something you can afford; there’s nothing wrong with that. Purchase ‘things’ with money. But whatever you do, don’t purchase ‘things’ with time.” I immediately saw the great wisdom in what he taught . . . his point was the proverbial “things” people are tempted to chase after … the boats, cars and houses and other trivialities people work so hard to pay for have the potential to cost much more than money. And all too often that is what happens; without realizing it, people pay too high a price with the one currency that cannot be saved, traded, borrowed, or exchanged: time. And time is the greatest currency of all. There is so much we can do with time – if we invest it wisely.

This photo is a reminder of moments that matter. This investment of time with my son will pay dividends for years to come. Had I not listened to my heart I would have been paying emotional penalties and interest for a lifetime. I am grateful I don’t have to pay the price of “what if”. I saw a moment and I invested time in it. No professional advancement, no amount of money, no material possession has the same value as this memory has with my son. There is simply no comparison.

Relationships with family are the most important investment. Anyone that tells you otherwise is selling something … and it’s not worth the price."
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Tyler Perry Comes to the Rescue for Woman with Cerebral Palsy

I was happy to stumble across this story.  The original article can be found here  but I found it on Cerebral Palsy Family Network.

People are good.

~*~*~*~*~*~*~

 Georgia woman with cerebral palsy is getting some help from a celebrity filmmaker after he saw a Channel 2 Action News report about her van being stolen.
Atlanta-based media mogul Tyler Perry called Channel 2 and said he wanted to give Alicia Day a brand new van, just minutes after seeing her story air Monday afternoon.
The family of the 24-year-old said someone stole her specially equipped van out of their driveway sometime Sunday between 7 p.m. and 9 p.m.
Day, who’s in a wheelchair, had no idea how she would get around. Despite her disability, she told Channel 2′s Diana Davis she prides herself on trying to be independent, working part-time as a greeter at Home Depot. Her mother, Hannelore Day, also relies on the $60,000-van to take Day to work and to doctor appointments.  But now transportation is no longer a concern thanks to Perry, Day said.
“My mouth just dropped to the floor when I heard his voice,” Day said about her reaction to Perry’s call.
Her father, who answered the phone couldn’t believe it was Perry.
He said, “Excuse me, who do you want to talk to? Who is this now?,’ Day’s mother said.
Her mother said she didn’t realize the report about her stolen van would make such a difference.
After seeing the report, the Home Depot, is also pitching in. Day’s co-worker donated $5,000 to help with her medical expenses. She’ll meet the company president Friday.
As for the missing 2000 Chrysler Town and Country van, it has DeKalb County handicapped plates with license No. DP0229.
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Sep 20, 2012

Your Calling as Guardian

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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 
 
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Sep 17, 2012

Marvel Creates Deaf Superhero

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This is just plain awesome.  Original article can be found
here.
~*~*~*~*~*~*~
Marvel Comics has a new character with a unique inspiration—a little boy. Four-year-old comic book fan Anthony Smith was born without a right ear and only partial hearing in his left. He needs the help of a hearing aid. But one morning he woke up and told his mom he didn't want to wear it anymore. Why? Because superheroes don't wear hearing aids, he declared.
Perturbed, Smith's mother emailed comics giant Marvel, inquiring about characters that might have share Anthony's struggle. The next day, they presented him with a picture of a hero called Hawkeye, who also sports a hearing aid. And they went even further, inventing a brand-new hero based on Anthony named "Blue Ear," the same moniker Anthony and his mom have always used for his hearing apparatus. They sent him a drawing, and he was so encouraged that he's been keeping his hearing aid in ever since. Kind of makes you want to give the guys at Marvel a big ol' hug.

Meet the Blue Ear.


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Aug 8, 2012

Olympic Inspiration

Who wasn't impressed by this man?


I was moved by his devotion, dedication, and sheer athleticism.  He's an example of the winning spirit...the same spirit that many of our children carry as well.  Perhaps my own daughter will not be running in the Olympics, but Oscar Pistorius of South Africa has made a huge impact on the world and, I believe, opened a massive door for so many of our children throughout the world.


I was further impressed that James also recognized the enormity of Pistorius' example and work and exchanged running bibs.  Pistorius has already received worldwide recognition and rightfully so.  Though I haven't searched extensively, I haven't found any interviews with James, seen any quotes on his thoughts and feelings and what motivated him to want to keep Pistorius' bib.  I'm equally impressed that this competitor recognized his fellow running mate's talent and courage, and then acted so that he could remember that moment his entire life...and then, perhaps, share it with those around him.  I can imagine James, 65 years old, telling his children or grandchildren about how he ran the Olympics with Pistorius, a man of sheer courage and strength, as he overcame his physical disability.  These are both examples of how we can change the world.

You can read more about the race and see his interview with the Today Show here.
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Jun 4, 2012

Let's Go, Matt! Let's Go!

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Matt has Spastic Cerebral Palsy, but opted to run in Field Day at Colonial Hills Elementary School despite being given the option to sit it out and despite the incredible challenge of his disability. What transpires is a boy who is filled with determination and a school of children who spontaneously come together and inspire Matt and everyone of us to do and be better.


Jun 2, 2012

How Bad We Need Each Other

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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

May 31, 2012

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

May 22, 2012

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,

May 16, 2012

Dad, Look What I Can Do!

I know it's unlikely that any of you haven't already seen this video, but I had to share it anyway. :)

"A boy with cerebral palsy was told he'd never walk, but did just that when he saw his returning Marine dad."


Apr 22, 2012

Something Greater

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God will never leave you empty.
He will replace everything you lost.
If He asks you to put something down,
it's because He wants you to
pick up something greater.

Apr 8, 2012

The Miracle

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Happy Easter from kidz!


This beautiful song is available for free download here.

Apr 4, 2012

One Year

Yesterday I met a new friend at the park.  We immediately felt a connection as she met Samantha and told me about her son, Brigham.  I was touched by her love, immediate friendship, and purity of spirit.  She was kind, gentle, and wise.  Wisdom comes through experience, and she has experienced so much.  I loved her instantly and hope to be able to stay in touch.

At age 3, Brigham was diagnosed with Hunter Syndrome.  Quoting from an article about him in the Deseret News:

Six-year-old Brigham Reneer is very much like the Tarzan character he idolizes.  He's tough, brave and he lives in a place fraught with peril — except Brigham Reneer's jungle is a maze of medical tests and painful procedures.  His friends are the make-believe wild animals hidden in the foliage. And his foes are leukemia and a rare disease that will kill him in a few years.  The strong little boy, wearing the leopard-skin robe, has Hunter syndrome, a severe form of a mucopolysaccharide disorder.  That means he's missing the enzyme that usually provides for the regeneration of connective tissues. Instead of regenerating, the mucopolysaccharides in his body remain stored in his cells, forcing his limbs to stiffen, facial features to broaden, brain to lose function and, eventually, his heart valves to shut.

This morning I spent some time reading about her son and stumbled across a video that some friends put together after one full year had gone by since Brigham passed away.  I've never liked the word "death" because it feels so final, and I don't believe that death, as painful as it is, is final.  Reading about him and watching the video helped me feel that again...that life goes on for those who are no longer with us....it reconfirmed my belief.  The video was gentle, tender, and too real for me to keep the tears from pouring over.  But what I felt was true, deep, compassionate love ~ something we could all use a little more of.






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Mar 15, 2012

Awww....

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Some sweet thoughts to tug at your mama heartstrings....
(Images linked).




 

 







Mar 11, 2012

Look Upward

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April's husband gave a beautiful devotional about Caleb's life and death. He shared this quote and other beautiful messages. You can watch it in full here.

"Mothers and fathers who anxiously await the arrival of a precious child sometimes learn that all is not well with this tiny infant. A missing limb, sightless eyes, a damaged brain, or the term “Down’s syndrome” greets the parents, leaving them baffled, filled with sorrow, and reaching out for hope.


"There follows the inevitable blaming of oneself, the condemnation of a careless action, and the perennial questions: “Why such a tragedy in our family?” “Why didn’t I keep her home?” “If only he hadn’t gone to that party.” “How did this happen?” “Where was God?” “Where was a protecting angel?” If, why, where, how—those recurring words—do not bring back the lost son, the perfect body, the plans of parents, or the dreams of youth. Self-pity, personal withdrawal, or deep despair will not bring the peace, the assurance, or help which are needed. Rather, we must go forward, look upward, move onward, and rise heavenward.


"It is imperative that we recognize that whatever has happened to us has happened to others. They have coped and so must we. We are not alone. Heavenly Father’s help is near." ~Thomas S. Monson

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