Lyrics and Behind the Songs
Tiny Wings (story | lyrics)
Promise (story | lyrics)
Believe (story | lyrics)
With Courage (story | lyrics)
Comfort of Your Peace (story | lyrics)
Heavenly (story | lyrics)
Last Wish (story | lyrics)
One More Day (story | lyrics)
Wonderland (story | lyrics)
Part of the Cure (story | lyrics)
Don’t Give Up on Me (story | lyrics)
Hand in Hand (story | lyrics)
Never Surrender (story | lyrics)
Not Lose My Way (story | lyrics)
Inside Out (story | lyrics)
Tiny Wings
With the birth of my daughter, Sasha, the song "Tiny Wings" was born as well. Although she was 4 weeks early, there was nothing that indicated that she was going to be born with any complications. She had an extremely rough start at life and was placed on a respirator shortly after birth. It completely shook our world. There is no worse feeling than leaving your child in the NICU (neonatal intensive care unit) and going home without her. This song was written on her 4th day of life.
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Tiny Wings
Tiny wings of hope take flight
Guide me with the mornings light
Fill me with a peace so pure
Make it so I cry no more
Take the tears and give me faith
Somehow I feel I’ve lost my way
Through the wind and blinding rain
Help me find my strength again
Cause I can’t take another day
If I can’t take your pain away
Wrap you in these arms of Grace
And take you to a better place
Filled with Love
It breaks my heart when I must leave
But your tiny soul, it must believe
That I am with you night and day
My spirit never goes away
I will pray on bended knee
For God to heal you faithfully
Wrap you in His arms of Grace
So Joy can fill this empty space
Cause I can’t take another day
If I can’t take your pain away
Wrap you in these arms of Grace
And take you to a better place
Filled with Love
Tiny wings of hope take flight
Guide me with the mornings light
Fill me with a peace so pure
Make it so I cry no more
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Promise
We all have expectations in life. When you become a parent, you just 'expect' certain things to happen - like their first words, first steps, first day of school, Graduation and beyond. Sometimes your expectations fall short of what reality presents, and it's heartbreaking when they do. There would be nights that I would just sit at the bedsides of Will and Sasha and watch them sleep and think about how much life has changed us. It was such a scary time for me and Ralph. It was those sleepless nights that I began to feel this resolve inside of me, that I was going to do whatever it took to make life be for them what it was meant to be - and to NOT have expectations... just HOPE.
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Promise
You look so precious in the morning’s light
And I’ve been watching you dream all night
Every time you missed a breath
I’d pray
“Please Lord don’t take my child from me yet”
I can see the promise in your eyes
And I can feel the pain and I can hear the cries
I’d give my life to take it all away
And I will fight for you until my dying day
There’s so many things that I have planned
to watch you crawl, to help you stand
to see you shine
to watch you grow
to feel the fullness of life
have children of your own
I can see the promise in your eyes
And I can feel the pain and I can hear the cries
I’d give my life to take it all away
And I will fight for you until my dying day
And I will hold you close, I will wipe away your tears
I will lift you up , and I will hold you near
I hope my love for you becomes the cure
That takes away your pain so you will cry no more
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Believe
Will had been diagnosed with a mild form of Autism and both he and Sasha were diagnosed with Primary Immunodeficiency Disease (similar to the 'boy in the bubble' but much less severe) within the span of a year. It felt like my whole world was falling apart. It was one of the scariest, loneliest, and hardiest times of my life. Even in our own home we were dealing with illness and this disorder (Autism) that was bombarding us no matter what we did. It truly felt like we were fighting a war inside our own home, a place that should have been 'safe.' When the immunologist said that my daughter had to start weekly infusions of gammaglobulin (blood product pooled from thousands of donors), I had a choice - to break or fight. My husband and I chose to fight. This was the turning point; I no longer wanted to feel brokenhearted about all the things that we were struggling with, I wanted to stand tall and be a voice so that NO ONE else would have to go through this alone.
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Believe
In the Silence of this moment
In the stillness of my heart
Tears are falling softly
My whole world has come apart
And everything I knew
Has changed to all that is unknown
Innocence, so fragile
Fighting a war inside my home
And somehow in that moment
Hope began to dwell
A precious shred of light
Broke the darkness of my hell
And all that I need
Is a moment of sweet Peace
To find the courage and the strength
To battle this disease
And If you could see their desperate tears
Within their tired eyes
If you could hear for a moment
All their tiny cries
Then you would know there was a reason
To fight with every breath that you breathe
You would stand beside them
You would Believe
Tiny hands to hold me
When all seems so unsure
Warriors of Hope
Their Legacy endures
And It doesn’t matter how hard
It doesn’t matter how far
It doesn’t matter how long
It just matters that we are
The voice of the innocent
The voice of the pure
The voice of Hope
And the voice to find a cure
And all I need
Is a moment of sweet Peace
To find the courage and the strength
To battle this disease
And if you could see their desperate tears
Within their tired eyes
If you could hear for a moment
All their tiny cries
Then you would know there was a reason
To fight with every breath that you breathe
You would stand beside them
You would Believe
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With Courage
Anyone who has been on a journey through 'uncertainty' can understand just how hard it is to be faced with so many decisions (some of them life-changing) and not know what the right choice truly is. With our daughter Sasha, her medical presentation perplexed some of the best doctors not only in our state, but in several other states. As her story played out, my medical issues came to play, and again, we were faced with more questions than answers. Despite all the 'unknown,' one thing was certain: at the end of the day, all that mattered was that I had my amazing husband and children with me - and that we could get through this together. I was learning the beauty of living in the moment and cherishing everything I had instead of focusing on what I didn't have.
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With Courage
It’s so hard not to know
which way to turn
which way to go
what road to take
what path to walk
when to listen and when to talk
all my tears
just fade away
when I look into
your pleading eyes
and all my fears
just melt so fast
when I hold you close and realize
that today is a blessing
where hope is born
and nothing else matters
in the eye of the storm
and today is ours
and ours alone
to cherish each moment of the unknown
it’s so hard not to know
why there are tears
why there is pain
how you can stop it
how you can explain
that there are no answers
that there are no cures
that this is just the beginning
and nothing’s for sure
And all my tears
just melt away
when I look into
your pleading eyes
and all my fears
just fade so fast
when I hold you close and realize
that today is a blessing
where hope is born
and nothing else matters
in the eye of the storm
and today is ours
and ours alone
to cherish each moment of the unknown
It’s so hard not to know…
with faith, with hope, with courage
I will go
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Comfort of Your Peace
When nothing goes as planned, your world around you just seems to fall apart. I think we all go here. No matter what our lives are like, we all have ‘broken places.’
The whole purpose of this song is to acknowledge that all get 'low,' that the answers aren't always what we want them to be.
For me, how I learned to cope was to find my faith and become strong in it. Knowing that God would be there through all of it, brought me such comfort and peace. This song is probably one of the most personal to me - because it doesn't elude to the fact that things are going to get better. Instead, it eludes to the fact that all I need is God and the rest will fall into place how it's meant to, that He will be there to carry me through this, to carry us all through this.
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Comfort of your Peace
Tiny pieces of my world
falling from the sky
countless tears of pain
falling from my eyes
cradle me
in your arms of grace
comfort me
mend me in my broken places
you can shelter me
when my world comes crashing down
you can lift me up
when I’m fallen to the ground
storms may rage
storms may cease
all I need
is the comfort of your peace
I will come to you
I will trust your perfect plan
I will yield to you
even if I don’t understand
cradle me
in your arms of grace
comfort me
mend me in my broken places
you can shelter me
when my world comes crashing down
you can lift me up
when I’m fallen to the ground
storms may rage
storms may cease
all I need
is the comfort of your peace
Tiny pieces of my world
falling from the sky
countless tears of pain
falling from my eyes
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Heavenly
Heavenly was inspired by the countless nights I had spent praying for those I love to make it to another sunrise.
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Heavenly
don’t you cry
don’t shed a tear
dry your eyes
I am here
by your side
I’ll be your guide
through the night
through your pain
through your fear
through the rain
through your joy
through your tears
through it all,
I’ll be here
Cause all I want to do
is heal you
All I want to see
is your heart soaring free
And nothing in this world
matters more than you to me
if God would answer my plea
Then tonight would be
Heavenly
Don’t
give up your dreams
Don’t fall apart
at the seams
I am will hold you
in my arms
where nothing
can do you harm
through the night
through your pain
through your fear
through the rain
through your joy
through your tears
through it all,
I’ll be here
Cause all I want to do
is heal you
and All I want to see
is your heart soaring free
And nothing in this world
matters more than you to me
if God would answer my plea
Then tonight would be
Heavenly
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Last Wish
Matthew and his parents (Tina and Ronnie) are some of the most inspirational individuals you will ever meet. Matthew is a young boy with mitochondrial disease. In the spring of 2010, Matthew decided that he wanted to be free from all artificial means of support (Central Line, Surgery, Hospitalizations, continuous tube feedings). He decided that he wanted to just 'be a kid' and live the rest of his life completely free. As parents, Tina and Ronnie struggled immensely with this decision. They were told that, if they honored his wishes, that he would likely only live 4-6 days at most. They worked closely with their medical team and came to the realization that Matthew's wish should be honored.
Matthew's family had been sharing their journey through carepages - a common blog for those dealing with chronic illness - for some time, and when they posted this development and how difficult a decision it was for them to make, it completely rocked my world. It made me sit back and think about the decisions our family has had to make for others who had a 'final wish.'
To me, Tina and Ronnie had shown their child the most pure form of love (Agape Love) - unconditional and completely unselfish. While it was heartbreaking and terrifying for them, it was what Matthew wanted and they were going to honor that. At the time of this album's completion, Matthew has far surpassed any medical experts expectation and is still freely (and happily) living his life. Despite the many ups and downs he has endured, he is living freely.
I was inspired to write as a way to process how I felt and the emotion that it stirred up in me, without the intent of ever sharing it... until I saw Tina's next update titled, "Beautiful Day." I knew, at that point, that I needed to share it with them. They have graciously allowed me to share Matthew's story, and I hope that you all will be as touched by their love and devotion as I was.
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Last Wish
The sun is shining today
Time to go out and play
This is something I will miss
But I am honoring
His last wish
I will give you your chance
To have one more dance
Free from all that binds
While the sun still shines
And I will follow your lead
Though my heart will bleed
I will answer your plea
To go with dignity
To see you smile
To see you running free
How can I say no?
But how can I agree?
How can I let go?
How can I say goodbye?
It is the love in my heart
It is the look in your eyes
It is how hard you've fought
It is how brave you've been
I know you'll be smiling down
And I know we'll meet again
It's a beautiful day
The clouds can't get in the way
There'll be so much I'll miss
But I am honoring
His last wish
How could I let go?
How could I say goodbye?
It was the love in my heart
It was the look in his eyes
It was how hard he fought
It was how brave he’d been
And I know he’s smiling down
And I know we'll meet again
The sun shined that day
He went out and played
There was nothing he missed
While I was honoring...
There was nothing he missed
While I honored
His last wish
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One More Day
This is probably one of the more meaningful songs to me. I wrote this song partly out of frustration and partly as a plea. It's incredibly disheartening when you ask people you are close with to support your cause (whether that be in the form of money, time, or simply spreading the word) and they don't. It's especially upsetting when the disease is serious or life-threatening. In many ways, the lack of support feels like we're being told, "you're not worth a cure" and, for a while, I was angry and hurt.
It got me to thinking that maybe people just don't understand how much it means to you, maybe people don't get it because they're not living it...
This song was created to bring awareness that there is no one cause that is more important than another. Because we are all worth a cure and we all need a voice.
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One More Day
Wings upon a prayer
are lifted up tonight
I am asking that my God
will make this be alright
I’ve met so many people
who want to make me smile
they helped me on this journey
they’ve gone the extra mile
but still there are no answers
there is no end in sight
I’m trying to be brave
Come join me in this fight
Can you look into my eyes
say that I’m not worth the cure
can you turn your back on me
and think that I’m not worth fighting for
know that you hold all my hope
and it rests within your hands
will you throw it all away
or will you try to understand
that I am counting on you
to give me one more chance
one more day to laugh
one more day to dance
Time is of the essence
this path is not my choice
please don’t be silent
I need a stronger voice
I am one of many
not one of few
that prays to God at night
to make your dreams come true
Please take a stand with me
alone, the battle’s never won
Be my voice, my strength, my wings
My life has just begun
Can you look into my eyes
say that I’m not worth the cure
can you turn your back on me
and think that I’m not worth fighting for
know that you hold all my hope
and it rests within your hands
will you throw it all away
or will you try to understand
that I am counting on you
to give me one more chance
one more day to live
one more day to dance
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Wonderland
It was early evening on June 28th. One of my closest friends, Chelsea, and her husband (and service dog True) were staying with us while they were moving into a new apartment. Chelsea has mitochondrial disease and had been experiencing an increase in her seizures. Her dog, True, needed to go to the bathroom, so I took her out while her husband Keith was reading stories to Will and Sasha upstairs. When I returned inside, Chelsea was laying on top of our service dog, Beast, and was having her second seizure of the night. I called for Keith and we sat on the floor with her waiting for her the seizures to cease. They did, but only for a moment. As she began to have another seizure, I called 911 and we waited for the ambulance to arrive. At this point, Chelsea was surrounded by not only Keith, but also my parents and my 2 nieces. We were all there with her and helping her through this. It was not a frantic moment; rather, everyone was calm, loving, and doing what needed to be done. I remember feeling so helpless and scared that we would lose her. When the ambulance arrived, it was clear that she was in crisis as she was still seizing. When they finally got her stabilized, they transported her to a local hospital and then off to Boston as the seizures continued. When Chelsea finally came out of it, she commented on how 'surreal' everything felt and how it felt like she was in 'Wonderland.'
This song was written about this incident and is dedicated to Chelsea (my Alice) and all those who suffer from seizures.
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Wonderland
Down the hole
Alice Goes
Where she stops
No one knows
She can never recall
How hard or fast the fall
Helpless as
She drifts away
we hold her close
we hope and pray
The minutes seem like hours
As she’s under its power
Wonderland
Ain’t so grand
On the other side
Where we stand
Desperate sighs
Vacant eyes
On our knees
Alice, hear our pleas
Wonderland
Don’t you understand
Alice has a bigger plan
Lives to change
A world to see
Wonderland, set Alice free
Coming back
To reality
Alice sighs
With relief
Her tired eyes say it all
That our love has cushioned her fall
Time between here and there
a laugh, a tear, so much to share
but Alice still holds on tight
And we won’t give up this fight
Cause Wonderland
Ain’t so grand
On the other side
Where we stand
Desperate sighs
Vacant eyes
On our knees
Alice, hear our pleas
Wonderland
Don’t you understand
Alice has a bigger plan
Lives to change
And a world to see
Wonderland, set Alice free
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Part of the Cure
In 2008, I met Chuck Mohan, Founder and CEO of the United Mitochondrial Disease Foundation. I'll never forget one of the first things he said to me, "You can choose to be a victim of this disease or part of the cure." Those words really hit home and shaped how I viewed our journey through illness. Though it all, one thing that I've learned is that together, we can do great things, help each other, and change lives.
I wrote this song for the United Mitochondrial Disease Foundation's National Conference in 2009 and performed it there as well.
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Part of the Cure
Can’t seem to find the answers
My heart hangs low tonight
Searching, Hoping, Waiting
I see no end in sight
When all I have are questions
No direction left to turn
Still I am fighting
Cause there’s so much left to learn
I’m never gonna stop
I will break through every door
I will tear down every wall
Till I find what I’m looking for
There’s one thing that I know
There’s one thing that’s for sure
I won’t be the victim
I will be part of the cure
The way has been tough
The journey has been long
No one can fault you
You can’t always be strong
But one thing that is certain
There’s one thing that I know
Follow your heart
And the peace inside will grow
I’m never gonna stop
I’ll break through every door
I will tear down every wall
Till I find what I’m looking for
There’s one thing that I know
There’s one thing that’s for sure
I won’t be a victim
I will be part of the cure
Together we’re United
On the Battlefield today
We stand with Courage
We will not walk away
Cause there’s so much left to fight for
There’s so much left to gain
We won’t give up - We won’t give in
And we’ll never be the same
And we’re never gonna stop
We will break through every door
We will tear down every wall
Till we find what we’re looking for
There’s one thing that we know
There’s one thing that’s for sure
We won’t be the victim
We will be part of the cure
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Hand in Hand
There comes a point in life where it doesn't matter what the 'answers' are and all that matters is that you are with the people you love. I wrote this song for my husband Ralph; it was my way of letting him know that no matter what, as long as we were together, we'd get through it.
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Hand in Hand
The moon hangs low
it seems there’s nowhere else to go
you hold my hand
I know you will understand
It’s not the way
that we thought that it would be
Together we’ll get through it
you and me
cause
you can lean on me
and I can lean on you
the path will make us stronger
there is nothing we can’t do
we don’t need the answers
just a place to stand
where we can pull each other through
hand in hand
the sun is rising
and together we are still here
trying to convince ourselves
that there’s nothing left to fear
it’ll be alright
it’ll be okay
Together we’ll get through it
We will make it through another day
cause
you can lean on me
and I can lean on you
the path will make us stronger
there is nothing we can’t do
And we don’t need the answers
just a place to stand
where we will pull each other through
hand in hand
it’ll be alright
it’ll be okay
together we will make it through another day
We don’t need the answers
Just a place to stand
Where we will pull each other through
Hand in hand
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Don't Give Up On Me
"Terminal" illness and illnesses that have no answers or viable treatments become often causalities of medical community. In many cases, people diagnosed with these illnesses are abandoned by their doctors in the sense that the doctors give up and stop searching for ways to enhance the life of the patient. Thankfully, our family has found a medical team that is far from this ideal, but sadly, we have encountered those whose doctors have 'given up.' It's an incredibly isolating, frustrating, and terrifying feeling.
In the same light, when family members and friends are told about our disease and the prognosis, we are told that they're 'so sorry' and people can't get past the severity of the disease. While I understand that they are expressing their feelings, it's hard to hear because it makes the 'end' seem so close and the journey to the end imminent. I don't want pity or sympathy, I just want understanding and support.
My attitude is that I'm not done fighting, and that I'm going to give this disease a battle it will never forget.
I truly feel, If I haven't given up... then why should they?
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Don’t Give Up On Me
Morning light has come
there is no end in sight
Prayers lift me up
and prepare me for this fight
I am ready, waiting
I hear destiny call
Courage in my heart
And my back against the wall
Don’t give up on me
I’m not done fighting yet
I’m going to wage a war
that my enemies won’t forget
The battle lines are drawn
deep inside of me
I will stand my ground
and fight with dignity
until there’s Victory
Battle scars will heal
and tears will find their end
I have found my peace
I will go on again
And you will see me shine
like a diamond in the night
I’ll always guide your way
My faith will be the light
Don’t give up on me
I’m not done fighting yet
I’m going to wage a war
that my enemies won’t forget
The battle lines are drawn
deep inside of me
I will stand my ground
and fight with dignity
until there’s Victory
Through it all I’ve learned
Just how strong that I can be
I’ll keep my head held high
Until there is Victory
And I won’t stop, I won’t give up
And I have only one plea...
Don’t give up, don’t give up on me
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Never Surrender
This song is an echo to "Don't Give Up On Me." There's nothing worse than knowing that things are degrading within you or the ones that you love and there's nothing you can do to stop it. Frequently, people are either overwhelmed by your situation or are unsure of the next thing to do to help so they walk away.
One of my closest friends, Kristin, was dealing with a difficult time after new test results revealed significant changes within her daughter's brain, a progression of her mitochondrial disease. She called me to share the news. When I hung up, I was just so emotional; I knew that feeling of helplessness as you watch your child changing before your eyes and you can't do anything to stop it - every appointment you hear more bad news or are left with more uncertainty. It really gives your soul a beating for sure.
But there's nothing greater the power of love. Kristin and I are both motivated by love. We aren't ready to give up on our children, nor are we ready to give up on anyone else who is fighting so hard in the face of something so uncertain.
When you're given a diagnosis of mitochondrial disease, many doctors (but certainly not all) just give up on you because there is no treatment and no cure. It leaves the parent/individual so alone, fighting and pleading for someone to fight with them and for them.
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Never Surrender
I hold my breath
I’m scared to death
Can’t bear to hear
All the changes that we have feared
Can’t bear to know
that your body is letting go
Can’t bear to say
that you are fading…away
I won’t give up on you
I will fight and I will promise you
that even on your darkest day
our love will always light the way
I will never let go
I will never give up and I will never give in
I will never look back
I will never surrender
I will fight forever
The look in your eyes
has got me hypnotized
a desperate plea
for healing and dignity
for comfort and peace
for a gentle and sweet release
for me to see
that you are fighting so hard for me
I won’t give up on you
I will fight and I will promise you
that even on your darkest day
our love will always light the way
I will never let go
I will never give up and I will never give in
I will never look back
I will never surrender
I will fight forever
I won’t give up on you
I will fight and I will promise you
that even on your darkest day
our love will always light the way
I will never let go
I will never give up and I will never give in
I will never look back
I will never surrender
I will fight forever
I will fight forever
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Not Lose My Way
This song is about choice. We all have choices in life. We can choose to be a victim of our situation or we can choose to find the purpose within the situation. For me, I had a choice: I could choose to let this disease take everything away from me, or I could choose to fight and show my children that we can do good in the face of something not so good. I truly believe that we all are on the same journey; we just have different paths with the same destination. There is no doubt in my mind that this path that I am on was meant for me. No matter how hard this path gets, I will walk it and not lose sight of my destination.
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Not Lose My Way
Look back
Look ahead
So much hope
So much dread
All I need is here with me
All I have will set me free
Cause I believe
This path was meant to be
And I will not be swayed
I will walk this path
and not lose my way
Reaching out
Looking in
Finding peace
with all that’s been
Holding on, not letting go
Moving where the seeds are sewn
Cause I believe
This path was meant to be
I will not be swayed
I will walk this path
and not lose my way
Keeping faith
Fearing not
Holding tight
to all you’ve got
Trusting with every tear
Praying that His Hand is near
Because I believe
This path was meant for me
I will not be swayed
I will walk this path
and not lose my way
I believe
This path was meant to be
I will not be swayed
I will walk this path
and not lose my way
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Inside Out
This was the song I wrote right after the diagnosis of Mitochondrial Disease was official back on March of 2010, and thus, it's probably one of the most personal I've written.
The day I got my diagnosis, I was sitting in the office with the doctor, completely unprepared for the news I was about to receive. It all felt so surreal, like this just couldn't be happening to me, like it was a cruel joke that was being played on me. I certainly didn't have time for this! My kids need me too much!
Everything and nothing changed at the same time. I had never known that was possible. I came to a crossroads - I could choose to lay down and let this disease take everything away from me, or I could give it all I had and fight the good fight and hope for the best. I chose to fight because there is just too much worth fighting for to give up. This was me coming to terms with the fact that, although I have a terminal illness, life doesn't have to end here and now. There's so much left in this world to feel and love and grow from...
This song was largely written for my husband, Ralph. Through it all he has been my rock, my shoulder, my strength. When times were their toughest, he was there - unwavering. When we married in 2001, he definitely did not sign up for this, and despite it all - the good, the bad, and the ugly - he's never left my side. I can't even begin to describe the depth of gratitude and love I feel towards him. He is a diamond in the rough, my gift.
I want to leave a legacy of courage for my children as I know they are battling many of the same issues I am. I want them to know that you can face of the darkest moments in your life with courage...with Hope.
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Inside Out
The rain is coming down
The words are falling round
There is no stopping now
Everything is changing
And the world I knew before changed
When I walked right through that door
Everything is different
Yet I am still the same
Inside out, I feel
like I am ready for this war
Inside out, I feel
that there is so much worth fighting for
My battle lines are drawn
and I won’t go down without a fight
I am ready, waiting, hoping, praying that this all turns out alright
And if it doesn’t,
Oh, if it doesn’t
At least I tried
There’s nothing I wouldn’t do to
take this burden off of you
doesn’t seem like it is fair
that everything is changing
This isn’t what you signed up for
when you walked right through that door
Now everything is different
And we are still the same
Inside out, I feel
like I am ready for this war
Inside out, I feel
that there is so much worth fighting for
My battle lines are drawn
and I won’t go down without a fight
I am ready, waiting, hoping, praying that this all turns out alright
And if it doesn’t,
Oh, if it doesn’t
At least I tried
My battle lines are drawn
and I won’t go down without a fight
Cause I am ready, waiting, hoping, praying that this all turns out alright
And if it doesn’t,
Oh, if it doesn’t
At least I tried
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All songs written, composed and performed by Stephanie Bush (Stefani Bush) © 2010