Be Like the Sweet-Smelling Flower

Flowers never emit so sweet and strong a fragrance as before a storm.


When a storm approaches thee, be as fragrant as a sweet-smelling flower.

~Jean Paul Richter

The Importance of Acceptance

Maybe this is a stretch as how it relates to kidz, but this made me laugh AND made me think of the importance of being accepted as we are. And how that acceptance/inclusion will help all of us unlock our full potential. You may have to watch it twice to get it completely. I did!

Eternal Gifts

I'm already busy making gift lists and getting presents wrapped. I came across this quote and was quickly reminded that I need to remember the true reason for the special season that is upon us. I thought I'd share a few things....

Christmas is not about the presents
but about His presence

The Wise Men

Go and search diligently
for the young child.
Matthew 2:8

The wise men exemplify the journey each of us takes as we seek the Lord. They remind us that as we draw closer to Him, we will be led by Him along our journey. ~Emily Freeman

Just as the wise men were told to search, we have to search also. It's not a passive thing that we will find Christ just because it's Christmas. We have to seek out the proper spirit -- His spirit. I pray that we can all find His presence, and instead of focusing on the presents in the upcoming weeks, we can remember the eternal gifts that truly matter....

Santa knows what I want for Christmas
but Jesus knows what I need
it can't be purchased wrapped up and placed
under an ephod tree

I need patience, kindness - virtues like these
to bend on my knee at the manger

Santa may bring these that last for a year
but eternal gifts come from the Savior

some days come where I'm playing selfish
I can't think of no one but me
then I think of all that I'm blessed with
and that's always best to give than to receive

I need faithfulness, love, generosity
to open my home to a stranger

Santa may bring things that last for a year
but eternal gifts come from the Savior

I need patience, kindness, generosity
to bend on my knee at the manger

Santa may bring things that last for a year
but eternal gifts come from the Savior

Santa knows what I want for Christmas
but Jesus knows what I need

Never Grow Up

I love, love, love these lyrics. Especially at this time of year, I see that childlike wonder in Chloe's eyes and I don't ever want her to lose that. I wish I had never lost that. I worry so much about what the future holds for Chloe.... will people be unkind to her? Most likely. Will she have her feelings hurt and face disappointment, grief and pain? Most definitely. I wish I could keep her in this safe, protected stage forever, but that is not to be. And so I wrap her up in my arms and relish every second while I can.....

You're little hands wrapped around my finger
And, it's so quiet in the world tonight
You're little eyelids flutter cause you're dreaming
So, I tuck you in
Turn on your favorite night light
To you, everything's funny
You got nothing to regret
I'd give all I had, honey
If you could stay like that

Oh, darling don't you ever grow up
Don't you ever grow up
Just stay this little
Oh, darling don't you ever grow up
Don't you ever grow up
It can stay this simple

I won't let nobody hurt you, won't let no one break your heart
And no one will desert you
Just try to never grow up, and never grow up

Oh, darling don't you ever grow up
Don't you ever grow up
Just stay this little
Oh, darling don't you ever grow up
Don't you ever grow up
It can stay this simple

And no one's ever burned you
Nothing's ever left you scarred
And even though you want to
Just try to never grow up

Take pictures in your mind of your childhood room
Memorize what it sounded like when your dad get's home
Remember the footsteps, remember the words said
And all your little brothers favorite songs
I just realized everything I had is someday gonna be gone

Wish I'd never grown up
I wish I'd never grown up

Oh, I don't wanna grow up
Wish I'd never grown up
Could still be little
Oh, I don't wanna grow up
Wish I'd never grown up
It could still be simple

Oh, darling don't you ever grow up
Don't you ever grow up
Just stay this little
Oh, darling don't you ever grow up
Don't you ever grow up
It can stay this simple

I won't let nobody hurt you
Won't let no one break your heart
And even you want to
Please, try to never grow up

Oh, whoa
Don't you ever grow up
Oh, whoa
Never grow up
Just never grow up

You Are Blessed

by Terri Mauro

"Thank You."

I find myself burdened today...

My day starts the same way it ends....

I check on my children and my husband. I am generally the first one up and the last one down.

Today, however, someone told me I was doing a good job.

As a mom, this is not something we hear often. As a mom to special children, this is something we need to hear more.

I am burdened by not saying thank you enough to those that touch my life without even knowing it. I am constantly and effectively inspired by the moms of other special children and their ability to persevere. It gives me hope in the midst of a bad day. It lightens my heart when I am feeling heavy. It lifts my spirits when I need to laugh.

So here's to you:

For the never ending conversations with well-meaning doctors

For the 2:00 am diaper change or glucose test

For the weight of making medical decisions

For the revolving door to therapists, nurses, and program managers (whom we LOVE)

For the oh-so-fun testing of the urine every morning

For the dirty looks you receive while tending to your "not normal" child in the grocery store

For the late nights scouring the internet for products, treatments, or information

For the equipment that IS necessary even if you have to fight the insurance for it

For the humility and grace it takes to advocate for your child

For wearing your heart on your sleeve while carrying your armor to every single doctor's appointment

For feeling alone because no one really understands you

For celebrating every single milestone in your child's own time

For seeing the beauty in a face(s) that society sees as different



THANK YOU



It is not said often enough!



~William A. Ward

Fragile Life

"Would you like a boy or girl?" and I reply

all blushing, body blooming like a rose
"It doesn't matter much to me; all I
want is ten fingers and ten fine strong toes-
A healthy baby with a lusty cry."

Such strange conditions, idly placed upon
our love of children born beneath our hearts.
As if we would not love a little one
that's formed awry, confusion in it's parts-
or treasure legs we know will never run.


Can you not stay, my baby? We'll repair
your damaged body, if you'll but live.
I fold myself in faith, hide from despair
Remain awhile--we have so much to give
each other--so much joy to share.

I mourn each problem but do not forget
The spirit held here by your mortal clay
I know that all will be restored--and yet
beg for this sooner-can't it be today?-
and weep for hopes all shattered, dreams unmet.


You're such a welcome burden, so I cry
to our shared Father, He who understands
and cares for me and loves you more than I
know how. Your fragile life rests in His hands.
And I? I'll raise you now...or by and by.

--Louise Helps

Choosing Hope

A Miracle Of Miracles: Realizing An Impossible Dream

by Saralee Perel


"So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable."
~Christopher Reeve

Recently, for the first time in 5 years I simply went out back, put my cane down, and started walking. I made it 42 yards.

Today I walked 5 miles.

My medical team had said this would be impossible. My brain could no longer send the signals for walking because those nerves in my spinal cord had been destroyed. Though certainly unintentional, my doctors did take something very important away from me: hope.

A while back, a psychologist pal of mine urged me to try to help myself. I was angry.

I said, "They're four of Boston's leading neurologists. They all said I'd never get any better." "They could have all been wrong."

"They said there's nothing I can do! No rehabilitation. No physical therapy. I'm not putting any effort into trying to walk and then be miserable when I fail."

"Trying is never failure."

I'd get steaming mad at people like her. What did they know? They came out in droves. I heard various things I should try: a soy-based diet, massage, Yoga, acupuncture, positive thinking. All of these well-meaning non-experts believed that traditional medical doctors do not know everything about human potential.

However, there was a common denominator in my friends' advice. And that was the word, "Try." What made me finally try? The answer is simpler than I'd have ever imagined. That day I tried walking on my own, I had simply said to myself, "Why not?" When I walk I have a Frankenstein-style gait. I get embarrassed so I explain. I met a gal who said, "Stop excusing yourself. Walk proud!" She's just one of the many who've taught me that if I open my heart to acceptance, the world is filled with support teams. I've also resolved to open my obstinate mind and really listen to others, experts or not. This not only fosters my own sometimes-frail belief in my abilities; it fosters faith in miracles.

One morning my husband, Bob, said there was a huge present for me in our driveway. He had researched "bicycles for disabled people." It was a 300 pound cycle for two. The seats were side by side. He could pedal while I sat by him and enjoyed the outdoors again. Um . . . did I mention it came assembled with a set of pedals for me too? Now, hundreds of miles later, after exhaustive hours of pedaling along beautiful bike trails, I only wish that we owned stock in Ben-Gay. Bob needs a tube a day to keep up with me.

Last week he repeated, "There's a huge present in our driveway." He led me outside. "Voila!" he said. "Oh no," I moaned. Bob dubbed it "The One-Woman Dynamo Power Bike." "Sweetheart? You know I can't bike on my own." He laughed sweetly. "I know. And you can't walk either. Then why does the pedometer I bought you have 74 miles on it?" And so, I made a now often repeated declaration that I am praying others will say to themselves as well. "Yes. I can." Think I love my bike? You bet. Think I love Bob? Of course. Think I love life again after cloistering myself in a self imposed no-can-do closet? Goodness! You have to ask? How do we find hope when hope seems impossible? Do we simply believe in our hearts, our minds and our very souls that we can beat the odds? Yes. Christopher Reeve said, "When we have hope, we discover powers within ourselves we may have never known. Once we choose hope, everything is possible." His immutable words still ring in my heart and I so hope they will in everyone else's: "And you don't have to be a 'Superman' to do it."

~~~

I read this and thought about how often the statistics of my sons disease can get me down. But my favorite was this quote "When we choose hope, we discover powers within ourselves we may have never known. Once we choose hope, everything is possible." Christopher Reeve . While some of our children may not have certain capabilities, we can teach them hope. Hope is a choice, we can choose to have hope. It will uplift all those around you. But most of all you will feel better, lighter, and a better sense of purpose.

Look Forward to the Future

Life isn't easy.

I don't think anyone ever claimed anything else. Did they? I mean, really, crazy is the man who says life is easy. But, it's also incredibly good, isn't it? I know there have been those who believe Samantha's story is tragic, that it's sad, that she is a trial in our life. I guess I understand why they think that, but I don't agree. She's not tragic. It's not sad (well, ok, sometimes it is). And she's all blessing. There are circumstances (because of her situation) that are trying, but she's in NO way a trial. She's beauty. She's kindness. She's generosity. She's forgiveness. She's love. She's a child of God -- right here in my home -- just the way she is. Because of her and all that she is, I am optimistic for the future. After all, if this

is as bad as it gets....life is pretty sweet...and I look forward to the future. Let us be real here: I'm in no way looking forward to some of the inevitable circumstances that will arise, that may bring sadness and pain that I will most surely experience due to, again, circumstances and situations that our out of my control. But, I am optimistic because I know that there's a loving God who knows more than I do. I am optimistic because (even if I didn't believe in a loving God), Samantha lights my world in ways I had never experienced before she was born. Because of her presence in my life ~

I have felt more pure

joy

pain

humility

anger

frustration

sadness

happiness

doubt

delight

faith

hope

charity

desire to improve

desire to relax (!)...

my priorities have realigned...

I have also

grown closer to family and friends

added amazing people to my circle of family and friends

...among other things.

So, yeah. Because life is pretty sweet, I can...or maybe choose to...look forward to the future with optimism. And it makes me smile.

The Same Way Twice

Last month I gave birth to my 2nd Special needs child. This child, Lily, and her oldest sister, Charlotte, both were born with a rare chromosomal disorder (partial trisomy 16 and partial monosomy 9). Charlotte passed away last year at age 3 years and 8 months. Lily is now one month old.

Before Lily was born we wondered if she would look like Charlotte, if she would have the same problems, if she would survive to come home. While listing off my hopes for Lily one day, my sister in law said to me "You know, this time will be totally different. God doesn't do things the same way twice." My husband, one hard day, asked in despair "Why do we have to do this again? Didn't we learn enough the first time?" I just shook my head and remembered what my sister had said.

While waiting for Lily, I thought about her passing away immediately, which was a possibility. We planned for that outcome. We also planned for her to come home at 3 days old like Charlotte did, setting up her cradle and buying a bigger car. I did not imagine the possibility that Lily would do things totally differently. She has been in the NICU for a month now. It's different than anything we experienced with Charlotte.

How grateful I am for everything Charlotte taught us--it has made things so much easier this time. I know the language, I know the procedures. I know what problems Lily might face based on her diagnosis. I know some of the doctors! I know that it is all worth it, that if we can get Lily home with us we won't regret the weeks in the hospital, the surgeries and the stress and the tears. Not that being home will be the end of our worries, but perhaps just the beginning. But we know it will be worth it.

I'm so grateful for that knowledge. I am so grateful for my girls, all of them. And I'm grateful for a loving Heavenly Father who knows what I need, what my husband needs, and what our daughters need and will always, always provide.

For more on Lily, see www.booferd.blogspot.com

Consider the sweet, tender children
Who must suffer on this earth...
The pains of all of them he carried
From the day of his birth.
He clothes the lilies of the field,
He feeds the lambs in His fold,
And he will heal those who trust him,
And make their hearts as gold.

Count Me In

This song was written by Emily Perl Kingsley, author of "Welcome to Holland."

Count me in
Count me in
I am special
I'm outstanding
I can win
So count me in

There is light and dark and freckles
Lots of different kinds of skin
Some folks like to sit real quiet,
Others like to dance and spin
Doesn't matter where you come from
Doesn't matter where you've been
Everybody is important
So count me in

Count me in
Count me in
I'm important
I'm outstanding
I can win
So count me in

Some have straight hair, some have curly
Some have hair upon their chin
Some have teeny little smiles,
Others have a great big grin
Everybody's an original
Even if you have a twin
Everybody is important,
So count me in

Count me in
Count me in
I am special
I'm outstanding
I can win
Count me in....

Sensory Decorating

Given the fact that Thanksgiving is quickly approaching, I find it only fitting to do a post on what I am thankful for. I think that anyone who knows me knows that I am going to say that I am most thankful for Hailey. It’s amazing how much one little girl can teach us just what is most important in life. Through Hailey we have learned to live in the moment, to not take everyday tasks for granted, and she has shown us the true meaning of strength and spirit. She has warmed our hearts and our home, just like the Thanksgiving apple pie!

This time of year take advantage of the seasons abundance of textural elements to bring the outside in.


The above picture is an example of a textural table scape for the Holiday. Make this a fun event for you and your child by foraging through the woods, or if you live in New England you may be lucky enough to find all of these beautiful treasures right in your own backyard. I think this is a wonderful thing to do especially if your child has any textural issues. There is something to be said about picking your own pine cones up off the ground and putting them in a basket to bring home and decorate for the holidays. These things will easily transition into your Christmas decorating as well. How easy and inexpensive! Your child will be happy to be included in the fun and the creative process. We all have glassware in our cabinets. I used a variety of heights and shapes to create interest. You don’t even have to have expensive glassware to look elegant. In fact if you look closely you can see that I have inverted the cover of my cake dish and placed it on top of a very generic cylinder vase. Add brilliant colored foliage from a maple or oak tree for height and visual interest and flank the base of the table with gourds, small pumpkins and a few candles for a reflective element.

What are you thankful for this Holiday Season and what things do you have planned with your child to help with the Holiday Decorating? Please let me know if I’ve inspired you and share with us the ways you engage your child in the holiday decorating.

An Open Letter to All Professionals

Hello?

New teacher, or therapist, or doctor? Is that you?

Oh hello…

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

My Heart left my chest
In tiny jeans and t-shirt
Walks around, exposed.

Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…

You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….

You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

by Pia of The Crack and the Light

Hard Core Sitting

What To Do About Your Brain-Injured Child

I don't know where to begin. About 8 months ago my life took a dramatic turn. Someone introduced me to Glenn Doman's work, and I began reading all of his books. They were basic parenting books -- how to give your children knowledge, each them certain things, etc. I thought of Callie as I read the pages, though my friend said she thought it would be good for Samantha too. I thought it was nice that she was thinking of Samantha but thought that this stuff was all way beyond her capabilities. It wasn't until a few months ago that I read What To Do About Your Brain-Injured Child. This book is, to say the least, revolutionary. At least it was for me. In it, he details all their research and how his program came to life.

After fighting in the Battle of the Bulge (interesting), Glenn Doman became a physical therapist where he worked with many stroke patients -- old and young. After a years time of massaging, stretching, doing exercises...no one showed any improvement, and some, even, were worse. How could this be? He was devestated and wanted answers. What he realized was that the traditional methods were only attempting to correct the symptoms of the real problem. The real problem is what he calls "brain injury." The injured brain could have received its injury before the baby was even born. Or, the injury could have occurred later...post-natal. Of course this is the reader's digest version of the reader's digest....but he got a team together -- with Temple Faye (renowned neurologist...interesting article using his methods for autism found here) and other knowledgeable people in their fields -- to work together to come up with some answers. Why aren't people getting better? How do we fix the brain? What are parents supposed to do with their brain-injured children?

(Let me take a moment to express how I feel about the term "brain-injured." I personally like it. Instead of a daughter who is labeled with a diagnosis of such and such and this is the prognosis, I have a daughter who has an injury and who has the potential to "heal." I'm not saying Samantha's going to miraculously "be healed," nor am I expecting that she'll be at 100% in 3 months from now, or possibly ever. However, to me, this term more accurately describes Samantha and her friends. She may not currently appear to be whole, but before her prenatal "genetic injury," she was ... and she can be restored to that one day. And in the meantime, she has the ability to progress towards that. This could be a post all on its own.)
After coming up with a new "plan" to help their patients, the results were phenomenal. As they did "exercises" that "exercised" the brain, not just the twisted leg or the tight arms, patients were walking who had been in wheelchairs their entire lives, blind patients were seeing, deaf patients were hearing. Nearly 100% of their patients showed improvement after a year's time, and most showed significant improvements.

Doman and his team didn't claim to be miracle workers...just doctors who wanted to really fix the problem. The problem was the brain, not hands that are too tight, ackward or clumsy movements, ataxia, shallow breathing, etc. He admits there are a few cases that they couldn't help. But due to the impressive results, the team received funding necessary to open a clinic and doctors and patients were coming from all over the world to Philadelphia to see and learn for themselves. That institute is still there. They still see patients. Other institutes throughout the world have been opened (Japan, Argentina, Brazil) to do this work within their own regions and are also seeing the same incredible results.

What is interesting to me, aside from the dramatic results that they saw, is that at one time these methods were considered extremely radical...yet today, some of these methods are widely used. Patterning. Oxygen therapy. Some of this stuff doesn't sound so strange anymore. Though some of the old school traditional methods are still used, they are often blended with the discoveries made by Doman and his team decades ago. They are becoming more and more mainstream.

Before reading this book, I began to understand how good this could be for Sammy. My husband, a more scientific mind than my own -- a doctor and skeptic on most things I suggest for treatment for our Sammy, and I both felt really good about this and decided to do therapy based on Doman's research. Once I read the book, I was even more certain that this was right for us. I've since read other books that I find fascinating...that show the same type of results based on similar types of research...and it excites me! It's so amazing how we have the ability to change our brains.

In fact, another book I highly recommend (though I'm not done reading it) is The Brain That Changes Itself by Norman Doidge. (Excerpt from his the book's website: The brain is not, as was thought, like a machine, or “hardwired” like a computer. Neuroplasticity not only gives hope to those with mental limitations, or what was thought to be incurable brain damage, but expands our understanding of the healthy brain and the resilience of human nature.) Incredible. This is awesome stuff and supports Doman's research, though Doidge in no way meant to do so.

In commencing Sammy's new therapy, we didn't fly out to Phili, but there is a therapist who lives in Texas -- a mother turned therapist (because of her own son's special needs), who flew out to us. She spent an non-intrusive day in our home with Sammy, evaluating, testing, and then setting up a specific individual plan for her. She taught us what to do. We touch base weekly on Sammy's progress. And in 6 months, she returns to San Jose, California to meet with us and many other families she is working with in the area. Yes, I'm obviously excited about this, but I'm also realistic (I think). This requires a lot of work from me. Because of Samantha's level of development, I'm doing a lot of small things each day...each taking anywhere from 10-60 seconds each, but doing each 10x a day. It seems like no big deal, but it does take time and scheduling. One aspect of the research that I particularly find comforting is that anything helps. Anything I can get done, even if I don't get it all done in a day, anything will help her brain make those nueron changes and create the proper new paths for ______ to start functioning as it should. I haven't done my job as therapist perfectly, but we are seeing progress. And that allows me to not beat myself up and feel pretty good about whatever I can get done.

I don't believe I'm as naive to believe that Samantha is going to be "cured" or miraculously "healed," but I do have faith that the changes and improvements we are seeing will continue...and I would even say spiritual confirmation that we have commenced the proper course for Samantha to achieve her potential. I'm not looking for Samantha to be healed, I'm looking for her to be the little girl Heavenly Father intended her to be in this lifetime. For many reasons, He intended her to be microcephalic, with seizure disorder, developmental delay, etc. I'm ok with that. But I also want to be doing and learning what I'm supposed to in this lifetime as well, and becoming who I'm supposed to be, too.

Whether you plan on changing your methods of therapy for your child or not, I recommend this book. It's easy to read and understand and if anything, it's very eye opening.

(I obviously feel very passionately about this, and please, if anyone has any questions, feel free to ask and with my limited knowledge and experience I can try to answer or lead you to someone who may have the answer.)

Thanksgiving Daily

I Saw a Child

I Saw a Child
by John Anthony Davies

I saw a child who couldn't walk,
sit on a horse, laugh and talk.
Then ride it through a field of daisies
and yet he could not walk unaided.

I saw a child, no legs below,
sit on a horse, and make it go
through woods of green
and places he had never been
to sit and stare,
except from a chair.

I saw a child who could only crawl
mount a horse and sit up tall
Put it through degrees of paces
and laugh at the wonder in our faces


I saw a child born into strife,
Take up and hold the reins of life
and that same child was heard to say,
Thank God for showing me the way.

Hope Now

How the Light Gets In

Think what you want of Leonard Cohen's singing voice (I'm personally a huge fan), but there is no denying that he is an incredible lyricist. Case in point....

Anthem by Leonard Cohen

The birds they sang
at the break of day
Start again
I heard them say
Don't dwell on what
has passed away
or what is yet to be.
Ah the wars they will
be fought again
The holy dove
She will be caught again
bought and sold
and bought again
the dove is never free.

Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That's how the light gets in.

We asked for signs
the signs were sent:
the birth betrayed
the marriage spent
Yeah the widowhood
of every government --
signs for all to see.

I can't run no more
with that lawless crowd
while the killers in high places
say their prayers out loud.
But they've summoned, they've summoned up
a thundercloud
and they're going to hear from me.

Ring the bells that still can ring ...

You can add up the parts
but you won't have the sum
You can strike up the march,
there is no drum
Every heart, every heart
to love will come
but like a refugee.

Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That's how the light gets in.

Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That's how the light gets in.
That's how the light gets in.
That's how the light gets in.

Once You Find Laughter

We hope you find laughter with your family this weekend!

"Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it."

~Bill Cosby

If I Had My Child to Raise Over Again

If I had my child to raise over again
I'd build self-esteem first and the house later
I'd finger paint more and point the finger less
I would do less correcting and more connecting
I'd take my eyes off my watch and watch with my eyes
I would care to know less and know to care more
I'd take more hikes and fly more kites
I'd stop playing serious and seriously play
I would run through more fields and gaze at more stars
I'd do more hugging and less tugging
I'd see the oak tree in the acorn more often
I would be firm less often and affirm much more
I'd model less about the love of power
And more about the power of love.

~Diane Loomans

Songs of Love

Have you heard of Songs of Love? Songs of Love is a nonprofit organization dedicated to providing personalized songs for children and teens currently facing tough medical, physical or emotional challenges, free of charge. I LOVE this organization. How amazing is it to have a song written just-for-you?!

Around Emma's second birthday I requested a Song of Love for Emma. I thought it would be something wonderful to share with her since she was hearing pretty good with her cochlear implant. We received Emma's Song of Love right before the activation of her second cochlear implant and I was super excited to have Emma hear her very own song with two ears!

I knew that Emma would love her song - she seems to enjoy music - but what I didn't realize is how much the rest of us would love her song, too! Julia loves Emma's song and I'm so glad she plays a prominent role in the song so that she isn't jealous that Emma has her own song and she doesn't have one. In fact, she often requests Emma's song whenever we are listening to music.

I LOVE the song they wrote for Emma. The writer captured the sweetness of having Emma in our life perfectly and every time I listen to it I feel like the luckiest Mommy alive to have two unique, amazing daughters in Julia and Emma. I especially like to listen to the song with the girls on the "tough" days - you know, the days when my back is hurting, we have loads of appointments, people make stupid comments to us, etc. This song always picks-me-up on those days.

I was lucky enough to talk with the songwriter/singer on the phone several months ago. The organization was doing a lot of outreach for votes to win a grant in the Chase Community Giving Campaign on Facebook and they were making phone calls and email requests to supporters. The writer/singer of Emma's song called us and I told her how much Emma and our entire family LOVES her song. It has really touched our lives and I was so thankful to get a chance to thank the writer personally.

If you know anyone who would benefit from a Song of Love, please let them know they can find out more information at their website http://www.songsoflove.org/ And, if you are looking for a worthwhile charity to make a donation to, I highly recommend this wonderful organization.

Brotherly Love

Matthew recently wrote this for school:

I have a brother who has a special body.

He can’t walk. He can’t talk. He can’t move his body in the way he wants. But does have his own language of love. One of the ways he tells me he loves me is with his wink. He is always winking because he only has one eye.


He shows me love when I lay by him. He is like a teddy bear because even though he can’t talk, he always listens. I can tell him my problems and he makes me feel happy.
When I’m having a hard day, I lay by him and he helps my bad feelings to melt away. He helps me to feel peaceful.


When I hug my brother I like to do a special arm lock with his arm and mine. My brother can’t hug me back, but when I want him to hug me I help him by putting his arms around my neck.


I can tell he’s happy when I’m around. When I come home from school and I’m near him, he usually gives me a smile.


My brother teaches me that love is the most important thing ever. He tells me with a feeling. He tells me with his heart. He shows me you don’t have to have a perfect body to love perfectly.