The Journey

In memory of my daughter  Casey Faye Marie Aschan-Cox 4/8/1992- 3/18/10

I had Muscular Dystrophy. There isn't any real logical explanation as to why I was born sick. All I know is God has a plan for each of us and for each plan there is a purpose to our journey. Some of us know what our purpose in life is and others will never find it. Some will wander aimlessly looking for their journey never to find it or their purpose ,then there are some like me who accomplished it without ever realizing it.

My journey with Muscular Dystrophy was not and has not been without purpose, nor was it in vain.It is through my illness that I helped doctors understand this disease a little more so they may find a cure. It was not to be in my lifetime but hopefully they find a cure for someone else. It is through my illness that I opened the eyes to those around me to how precious life really is. Something people often take for granted without even realizing what a wonderful gift they have been given.

It is through my illness that some of those around me have realized that life is too short to be afraid of our feelings. My Muscular Dystrophy was been beaten back by the power of love. Love did things for me that modern medicine and treatments never could. It gave me the strength to fight another day, another treatment, another medicine , another procedure, another test and a final goodbye.

Love is and will always be the most powerful of emotions, one not to be afraid of but to be embraced. To be loved by someone unconditionally and completely is to reach into your soul and feel warmth spread throughout your body and mind.

  

It was through my illness that I have seen the strong cry, I saw the strong break. I heard the strong begging for my Muscular Dystrophy and GOD to take them instead , it helped me to find more strength to keep on fighting till my last breath was taken. It is through my illness and death that some of them who hadn't talk to God in a while have once again began to pray.

That was my purpose.This was to be my journey. My death was not in vain. I have taught people how to pray. I have taught people about Muscular Dystrophy. I have let my voice be heard for others like me. I helped many doctors help others. I have taught people unconditional love. I have taught them about patience and perseverance. I have taught them how to go after their dreams and goals. Most of all I have taught them how to live.  

It was through my illness that I have shown there is no guarantee for the future--only dreams for it. Whether the future is just another day or another 50 years, we should all dream big and live fully everyday. Live your life. Love your life. Love your family in friends, but above all live your life to the fullest each and everyday.I accomplished so much in such a short amount of time and lived each day.

I lived.I loved. I am loved. I was here. I continue to touch the hearts of many friends and family members and even total strangers, in death Ive touched lives as well. My memory lives on strong in in those who loved me. My journey will not be forgotten just because I am not here.

Remember me

Remember Me"...

I'm looking down from heaven, and all I see are tears.

When my days were spent to make you smile for so many years.

I know I'm not there physically, and my presence you will miss.

But through your pain and sorrow, loved ones please remember this:

I've touched the lives of many, with hugs and all my jokes.

Some tall, some short, some black, some white; all different kinds of folks.

I've made so many friends, long lasting relationships.

I was always loved by family, they are as good s it gets.

So this is not the end for me , remember all I've done.

Remember all the joyous times, the laughter and the fun.

I've brought you so much happiness, so there's no need to cry.

For as long as I am in your hearts, then I will never die..."

Tonight I hold this candle...

Tonight I Hold This Candle, in memory of you

 

(This picture was taken by me at the Angel of Hope in December 2011)

 

Hoping someway, somehow, my love will shine through

I close my eyes, lost in the glow

There are so many things I want you to know

This candle says, "I love you."

This candle says, "I miss you"

This candle is saying, "I remember you"

When I'm holding it towards heaven, it feels like you are near

If you're looking down tonight and see this candle burning bright

It says, "I'm wishing you were here."

In the glow of this candle, I can almost see your smile

And it carries me away for a little while

To another time, another place

When all it took to light up my world was your beautiful face

This candle says, "I love you."

This candle says, "I miss you."

This candle is saying, "I remember you"

When I'm holding it towards heaven, it feels like you are near

If you're looking down tonight and see this candle burning bright

It says, "I'm wishing you were here

Learning ...

I wrote this a while back and came across it today while looking for some other files.. I think its meant to be shared being this is about the grieving process..


Something I’ve figured out since I lost Casey. I have figured out I’m human and will have some really rough days and some decent days. I have come to figure out that alcohol doesn’t always numb the pain and its ok to go to the doctor and ask for help. It’s also ok to have days where you don’t accomplish anything except getting up out of bed and getting dressed. Some days you actually take a shower too because you feel like it.
I’ve also figured out its pretty hard to say what you would and wouldn’t do when and if your child were to die. It was pretty easy to say that I wouldn’t do this or Id be doing that but the reality of it is, you don’t know unless you experience it and it isn’t something id wish on my worst enemy.

I’ve come to realize that sometimes you have friends and people who care about you that you don’t even realize, those are the ones you can text in the middle of the night and just to see them say it will get better, or talk to me and you know they will listen. It’s the ones who send you a thinking of you card to let you know they are thinking of you on your child’s birthday after you have lost them that you KNOW really care.
I’ve also come to realize that some people are also just full of shit by saying Ill do this or Ill do that to help you out during this time, help you out with funeral costs or just to be there for you to talk to. They say what they think is going to help and in reality, somehow they seem to conveniently forget these conversations.

I’ve come to realize I hate hearing I know how you feel from people who really don’t know how I feel because they haven’t gone through this. I’ve come to hate the simple sentence of where is she buried.
I’ve come to accept that anger is a strong emotion and that by being angry its proving to yourself you are still human, and that the tears that come with it are an outlet for the anger and sorrow to get out. Whoever said anger and sorrow would eat you alive was right, it will if you let it. I’m learning that while I don’t know what normal is anymore Ill figure it out eventually with my surviving children and Big D by my side.

I’ve also been figuring out that the best thing you can do is to honor the person who passed away in anyway that you know would have pleased them and made them smile. Even if it’s something as simple as planting some flowers in a garden that you know they would have loved. By carrying on family traditions, and making some new ones. Simply learning to live again, even if it isn’t with them.
I’ve also learned that sometimes the hardest thing you can do in life is to learn to accept their death and live again. I haven’t reached that point yet but I know when I do, Casey will be smiling down on me.

Ten Commandments For A Grieving Parent

1)) You shall Not tell them ~ To Get On With Their Lives

2) You shall not tell them ~ Be Strong For Your Family

3) You must not tell them ~ You Have Other Children

4) You Must Not Tell Them ~ To Forgive

5) You Must Not Tell Them ~ They're In A Better Place

6) You Must Not Tell Them ~ To Stop Crying

7) You Must Not Tell Them ~ To Let Go And Let Them Be At Rest

8) You Must Not Tell Them ~ I Know How You Feel
(Don't Compare Yourself And Your Experiences)

9) You Must Not tell Them ~ You Need Closure

10) You Must Either Be My Friend And Stand By Me ~ Or ~ Leave Me Alone

I'll Grieve As Long As I Want.
I Will "Try" To Heal At My Own Pace And Time.
Refrain From Calling Me Names Behind My Back.
Thank you For Understanding.

~A Grieving Parent ♥

A better place....

A Better Place

She’s in a better place right now
Than she’s ever been before;
All pain is gone; she’s now at rest;
Nothing troubles her anymore.

It’s we who feel the burden of
Our sadness and our grief;.
We have to cry, to mourn our loss,
Before we get relief.

We know we’ll reconnect with her
At the end of each life’s road;
We’ll see her cherished face again
When we release our earthly load.

by Tokens of Friendship

Stepping Stones


Come, take my hand, the road is long. We must travel by stepping stones. No, you're not alone. I'll go with you. I know the road well, I've been there. Don't fear the darkness. I'll be with you. We must take one step at a time. But remember we may have to stop awhile. It is a long way to the other side and there are many obstacles.

We have many stones to cross. Some are bigger than others . . . shock, denial, and anger to start. Then comes guilt, despair, and loneliness. It's a hard road to travel but it must be done. It's the only way to reach the other side.

Come, slip your hand in mine. What? Oh, yes, it's strong. I've held so many hands like yours. Yes, mine was one time small and weak like yours. Once, you see, I had to take someone's hand in order to take the first step. Oops! you've stumbled. Go ahead and cry. Don't be ashamed, I understand. Let's wait here awhile and get your breath. When you're stronger we'll go on, one step at a time. There's no need to hurry.

Say, it's nice to hear you laugh. Yes, I agree, the memories you shared are good. Look, we're halfway there now; I can see the other side. It looks so warm and sunny. Oh, have you noticed? We're nearing the last stone and you're standing alone. And look, your hands, you've let go of mine, and we've reached the other side.

But wait. Look back. Someone is standing there. They are alone and want to cross the stepping stones.
I had better go; they need my help. What? Are you sure? Why, yes, I'll wait. You know the way - you've been there. Yes - I agree - it's your turn, my friend - to help someone else cross the stepping stones.

By Barbara Williams.

In The Arms Of The Angel

A memory is a way of holding on to the things you love, the things you are, the things you never want to lose... I thank God daily for my memories of you Casey.

In memory of an angel...

May the angels guide her now,
And watch her slightly curly head,
And lead her in their games.
To do there,what she couldnt do here.

She cannot come to harm.
Nothing can hurt her anymore.
She knows more than we know,
Her light is brighter far
Than daytime here below.

Her path leads on and on,
Through pleasant lawns and flowers,
Her baby blue eyes open wide
At grass more green than ours.
At the beauty of constantly blooming flowers.

With new friends like herself,
The shining girl will sing.
Her legs run and dance.
Exploring wondrous woods,
Sweet with eternal spring.

Yet, she is lost to us,
Far is her path of gold,
Far does the city seem,
Lonely our hearts and old.

I totally dropped the Fathers Day Ball!!

After doing my post a moment ago I realize I never said Happy Fathers Day to all of the father's and Daddy's out there. So happy belated Fathers Day too all you Dads and Fathers out there. Blessed are the children who have a good dad or father to help them grow up in our messed up society.

What makes a good dad you might ask ? Here is what makes a good father or daddy..A good father makes all the difference in a child's life. He's a pillar of strength, support and discipline. His work is endless and, oftentimes, thankless. But in the end, it shows in the sound, well-adjusted children he raises. They arent always that man's biological children but they are children of his heart.

12 traits of a good father or daddy: (found here these are the highlights)

He's a good disciplinarian He allows his kids to make some mistakes , however, he makes it clear that repeated irresponsibility won't be tolerated. He's open-minded and he allows his children to be citizens of their day and age.He teaches his children to appreciate things and never to take things for granted.He accepts that his kids aren't exactly like him.He also respects their values and opinions, as long as they don't harm the family or anyone else. He spends quality time with his children.... Remember making memories doesnt cost a dime. He leads by example . A good father is above the old "do as I say, not as I do" credo.A good father also illustrates the importance of affection by professing his love for their mother in front of them. And he won't fight with her in their presence. In all, he adheres to the values he'd like his children to follow.He's supportive & loyal and is also his children's public defender, standing up for them when needed. He waits for privacy to administer discipline. A safety net, a good father is also the person his kids turn to when things go wrong. He challenges his kids. A father wants his children to be the best they can be, and gives them challenges that help them grow as human beings
He teaches his children lessons.A father figure is the prime source of knowledge in the ways of men, and teaches his kids accordingly. A great father knows he must sacrifice his own comfort for his fatherly duties.He protects his family at all costs.As the main provider of security and necessities, a father will do whatever he can for his family. He'll take a second job to provide for them, and he'll put his own safety on the line to keep them out of harm's way. This is how a father instills in his children the importance of personal sacrifice.He shows unconditional love.This is the greatest quality of a good father. Even though he gets upset at his children's faults and may lament that they did not attain what he hoped for them, a father loves his children no less for it.

Losing someone so special ....

Losing someone so special to you
Someone you loved so dearly
To lose that person
Is the greatest loss ever.
So how do you go on?
How can you make it another day?
After losing that most precious someone
How can you make it?
How can you survive with the endless tears
Each night you lay your head on your pillow?

What makes you go on?
How do you get up in the morning
Without your precious loved one?
How do you keep going on and on
With this terrible pain in your heart
That no amount of words
No amount of nature
No amount of belief
Can take it away from you?
It just lingers and lingers
As loss, loss, loss!

Where are you?
I miss you?
Why are you gone from my life?
I want you back
Why, why, why?
Yes, that is what it feels like – the loss.

Yet I am still here,
I am still surviving,
I am still going on,
I am still here.

Yet I feel as if a huge void is here in me
Like part of me vanished with you
And I need to get that part back
But wonder when I will?

And my loss is increased with
Not just losing you
But losing part of me too.

Do I have an answer to loss?
Do you?

The thing I can think of about loss is:
I am so lucky I got to know the precious person.
I got to see their beauty and their grace.
I got to enjoy their presence.
That I can treasure.
That I can keep
Special in my heart forever.

And maybe loss is just that – loss.
But just as we have loss,
We have all the special memories
That we can keep special in our minds forever,
And that is something we will never lose.

So maybe the answer to loss is to treasure the memories
Of our loved one
For as long as we have a memory
We never lose out, with loss.

What if I whispered your name...

How is can it be that 15 months have passed since Casey passed away ? It still feels like yesterday somedays and other days it feels like its been forever since I heard her voice , held her hand and heard her say I love you Mom. I am so afraid I am going to forget how she smelled, how her eyes twinkled when she laughed and her voice.

I can not imagine how her father or her daddy must feel knowing tomorrow is Father's Day and they wont be getting a phone call again this year. I can only speak of how it felt on Mother's Day knowing I wouldnt be getting told Happy Mother's Day Mom , I love you. I know of how it felt on my birthday last year her not being around to tell me how old I am getting and that she loved me. It feels horrible. Its like a emptiness that can not be filled. Part of me is missing , like a broken puzzle. I have a part that is forever void and never can be filled again.

I found this song tonight on Facebook and it broke down the wall Ive been holding in today... Late at night when the rest of my family is sleeping I find myself whispering to Casey and I really hope and pray she can hear me.. Somehow my day is not complete until I make sure to tell her goodnight and that I love her. I find myself in the morning walking by her urn and telling her good morning and that I love her. I pray she can hear me when I talk to her. There are so many things I want to share with her , God , I hope she can hear me. I hope she can see what is going on with her sibilings and is watching them grow up. The only thing I hope she doesnt see and hear is me crying for her .

Loss

The moment that I knew you had died,

My heart split in two,

The one side filled with memories,

The other died with you.

I often lay awake at night,

When the world is fast asleep,

And take a walk down memory lane,

With tears upon my cheek.

Remembering you is easy,

I do it every day,

But missing you is a heartache,

That never goes away.

I hold you tightly within my heart,

And there you will remain,

Life has gone on without you,

But it never will be the same.

For those who still have their children,

Treat them with tender care,

You will never know the emptiness,

As when you turn and they are not there.

Don't tell me that you understand,

don't tell me that you know.

Don't tell me that I will survive,

How I will surely grow.

Don't tell me this is just a test,

That I am truly blessed.

That I am chosen for the task,

Apart from all the rest.

Don't come at me with answers

That can only come from me,

Don't tell me how my grief will pass,

That I will soon be free.

Don't stand in pious judgment

Of the bonds I must untie,

Don't tell me how to grieve,

Don't tell me when to cry.

Accept me in my ups and downs,

I need someone to share,

Just hold my hand and let me cry,

And say, "My friend, I care".

What it is really like to lose a child.........

The death of a child is similar to having a terminal illness in that there is never a release from the constant pain. However; in this case, the pain is mental, emotional, and, at times, physical. It is there and will always be there until the day you die. You can be distracted, but only for a short while, and the pain returns full force.

It is the distractions that get me through it, and when there are no distractions, I get stuck in my grief rut. Every time I start to think that I am doing a little better, it hits me all over again.

It is a feeling of painful emptiness, anxiety to the highest level, the thoughts, the loss, the “what ifs”. Why her, why us, why me? I have days when I do not want to survive this, and then there are days when I know that I will. I wish I could rejoice in the gift of her life and find peace with her leaving, but I just cannot allow myself to do that.

It goes deep into your soul as a mother, and it affects everyone differently. To those who have stuck by me and put up with my craziness through it all…thank you from the bottom of my heart. I love you. To those who turned their back on me at the weakest point in my life… I am sorry my grieving process has not met up to your expectations.

Until you are a part of this club that nobody ever wants to be in, that no parent should ever have to be in.. how dare you judge me. I have learned who my true friends are and that who I thought were true friends, never really were.

Its the little things..

Sometimes its the little things that bother me so much. Like reading the newspaper or hearing about violence on the news. It makes me wonder how God could allow Evil to walk the earth and yet confined my daughter Casey to a wheelchair most of her life. How he could take someone like her from us and yet leave a thug to wander the earth and put others in so much pain.

I often question God on his choices these days all because he chose to take my daughter from this earth. I know of mothers who have lost their children because of senseless murders where the person who did it has not been caught yet and again I wonder about God's decisions to break our hearts because he chose to take our children home.

I question why doctors can be so dang arrogant and full of themselves.. Do they think they are God ? Why do we have to sit back and allow them to think they have the right to play God ?

The day I found out Casey was in full kidney failure from the sepsis I went downstairs to go outside and get some air. I ran into one of her "specialists" and he told me he thought Casey was doing wonderful and that felt she would be better in a few days. Mind you he hadnt checked in on her in a few days and had sent her home twice before she was taken to the hospital with an oxygen level of 65, but had been at the hospital 8 hours before that , knew she had pneunomia and HE SENT HER HOME !

In my heart I honestly feel had he been on the ball .. It wouldnt be like this . I hope and pray he knows how he helped and played a hand in breaking my heart. Breaking her Daddy's heart. Breaking her father's heart.Breaking her sibilings hearts. Breaking her grandparents/ great grandparents hearts . Breaking her Aunt and Uncles Hearts (great aunts & uncles included). Breaking her cousins hearts.And everyone who loved hers heart, just not family. Friends of hers. Nurses of hers. Other doctors of hers.

Where is the justice and how will these hearts ever mend ? Today has been 1 year, 1 month and one week since she became an angel. I really have to agree with the Bellemy Brothers with their song.. Some broken hearts never mend. I dont think mine ever will.

Happy Birthday Casey

Today should have been your 19th birthday, you should be here with us to celebrate. Instead you are gone. We are left here to celebrate the beautiful day you came into our lives. I remember the day you were born like it was yesterday. How beautiful you were and how small your little fingers and toes were. Some things never changed. Your feet never got very big and you had such petite little fingers. Such beautiful hands. Such beautiful eyes..  You blessed us all with your presence. With your sparkling blue eyes and that smile .. Beautiful on the inside and out. You were genuine , truly one in a million. Happy Birthday in Heaven Turtle.

A Special Birthday
(author unknown)
Please God, make them remember that
Today is a special, birthday.
Make them understand that
The memories don't go away.
Bless them, with ears to hear and hearts that care.
Enable them to listen while I share.
Shelter them that they may never know my pain.
Help them to help me know that my child's life was not in vain.
Help them to remember, Lord that I wish
That my child was here
So we could still celebrate.
To understand that I still
Feel the nearness of my child.
To see beyond my smile and the
Words. "I'm okay."
Please God, just let one remember today
Is a special birthday!
____________________

Many happy returns on the day of thy birth
May sunshine and happiness be given
And may the Dear Lord prepare you on earth
For the beautiful birthday in heaven

It just hit me....

I was replying to another mom whose son passed away in an online forum. We were talking about organ donation and our children.

What I wrote came up and smacked me right in the face with reality.

Here is what I wrote.. for confidentiality sake I am not writing what she wrote but will post mine. All I will say is she had a negative experience with organ donation.

"Casey's eyes were donated. More would have been had she not had sepsis. This was her wish. When she died they had the utmost respect for me, and my wishes. They let me sit with her until I was ready for them. They did her thumbprints... for me and locks of her hair. Casey knew she was dying and wanted to make a difference. Even though they used her eyes for research instead of donation (because of the infection) I am still happy she helped teach students about muscular dystrophy and eyesight. Because she lived she made a difference when she died. I am so sorry that your ex and personnel from the hospital (??) acted like that *hugs*"

It came to me as clear as if she (Casey) was standing here whispering it in my ear...

Casey lived because she knew she was dying. She always tried to make a difference. Because she lived, she made a difference. In death she made a difference. My daughter Casey will continue to make a difference even in death. Those who knew her wont forget her anytime soon. Those who don’t know Casey will see a glimmer of who she was , by those of us who loved her.

In a perfect world...

In the 358 days (11 months and 21 days) since my daughter Casey died my reflections on her life have not changed. I still see her pink and white Nike tennis shoes Abby wore for a short time after Casey passed away in the girl’s bathroom. I loved to watch Abby run and jump in those shoes. They never moved that way with Casey in them. I’ve seen Ally wearing some of Casey’s old shirts and they never moved like that with Casey in them either.

The photos in our house, some taken weeks or months before she died, are of a 17-year-old Casey. It is strange to think that when I am 80, I will still have a 17-year-old Casey framed on my wall. I will never know a 19, 21, 30 or 35-year-old Casey.

I will never know college graduate Casey. I will never know how happy she would have been on her graduation day from college. I can only remember her high school graduation and how proud she was laying there in the hospital knowing she was achieving high school graduation knowing she was dying. I will never see the smile on her face on her wedding day. I will never see her holding one of the 8 grand-babies she wanted to adopt so she could have children. I will never hold her children or throw a baby shower for her.

Her face is permanently frozen at 17 years and 10 months. This is the last family picture we will ever have with Casey in it. The same day she was so proud to show off her new eyebrow piercing in for her senior pictures. You know the one of her in her favorite red shirt. The eyebrow piercing she got the night before our pictures. This same picture is the one sitting in her curio cabinet with her ashes.

I’m sure that is something all grieving parents have to come to grips with, and I still am learning to try to come to terms with Casey’s death. She left us far too soon. I wasn’t ready for her to go , and I honestly know I never would have been ready to have her go.

I dream about Casey on the nights I sleep well enough to dream. In all of my dreams about her, she is active, able and full of life — as she was here on earth except there she can do everything she couldn’t do here on earth. I am not one to analyze dreams, but I have awakened several mornings with a small smile on my face, because the dreams remind me that she is in that she is free from the confines that held her back here on earth.

Tears creep back in, in some scattered private moments when I least expect it. Seeing dates on a calendar (March 9^th , March 10^th , March 11^th , March 15^th , March 16^th , March 17^th , March 18^th and March 21^st ) . Sometimes the tears threaten to spill over even driving by the hospice (Women and Children’s center). Small unexpected artifacts bring memories of the day, the morning she died, rushing back in. I haven’t bought a can of spaghettio’s since she passed away. Milk jugs are not my friend anymore then the calendar is. I cannot buy nail polish anymore either which I'm sure is a crime against the twins but I can not stand there and pick it out knowing I will see the colors her beautiful fingers and toes were painted and how much she wanted them the morning she died.

Until the day I die, I will always be a mother of four. In my frequent “conversations” with new colleagues at school, I will tell them about Casey because there is no other way to life. I am unable to say with a clear conscience that I have three children because if I tried to say that I would be lying and betraying Casey. This to me is the ultimate sin to her memory. She lived a life worth telling people about.

I always say, “I have 4 children. I have twin daughters who are 14, a son who is 3 and my oldest daughter should and would be 15 years older then he is. My oldest daughter Casey died, at age 17 almost a year go.” That feels right to me. And it has also opened up countless opportunities to share my daughter’s story if they ask.

My daughter Casey lived because she knew her time was limited. She studied hard. She was a good daughter. She was a good student. She was a good friend. She is dead. She is never coming back to us here on earth.

This isn’t how life is supposed to go. She was supposed to mourn me, not the other way around. It isn’t fair and it will never be fair. I have an empty spot in my heart that will never heal and will always long for my daughter and who she was, and who she should have become. My heart aches for Casey daily. Some days aren’t as bad as others but they aren’t how they should be in a perfect world. I have come to realize my heart is forever broken.

Muscular Dystrophy Walk

Tonight as I was sitting here contemplating doing my Statistical Reasoning homework I got sidetracked by my email on Facebook. I know that doesnt sound like much of a big deal but it happened. It got me thinking.


It reminded me that this coming Saturday, Feb 26th 2011 we are doing the Muscular Dystrophy walk in Casey's memory. Ive had it in the back of my mind all week and done a few short posts on face book to friends of mine in a group of wonderful ladies Ive known for about 4 years now.

Here is the information about the MDA Walk for those who might be interested in doing the walk or contributing to Team Casey. http://walk.mda.org/mda-muscle-walk-cedar-rapids .

You can also use pay pal  Please if you chose to donate leave me a message so I can send you a receipt for your donation which is 100% tax deductible. It doesn't have to be an elaborate amount. Even a dollar helps raise awareness and will go towards research.

I miss my daughter every single day - My hopes is that this money will possibly help someone else from going through the heartbreak I (and our family) have gone through since she passed away 11 months ago. 

All funds collected will be going to research for Casey's type of Muscular Dystrophy.

Which brings up  I have never explained or said exactly what type she had other than being born with it.

Casey had what they considered "Congenital Muscular Dystrophy" meaning she was born with it but they didnt and never could pinpoint exactly what type she had. 

She went from Mild to Severe over time and eventually ended up with the diagnosis of :


Severe Congenital Myopathy Muscular Dystrophy.

Ill break down parts of it into simpler terms .
Congenital - Born with
Myopathy - Generalized Muscle Weakness
Muscular Dystrophy - Stealing dreams, stifling dreams all over the world and breaking hearts.

One person at a time. One child at a time. One family at a time.

Thank you.

The Beginning.

Welcome to Turtle's blog. Well its really not her blog but it's all about one of the most fantastic people someone could ever have the pleasure of knowing.

My oldest daughter Casey.

Casey was born on Wednesday, April 8th 1992 at 9:38 pm. I still remember that day like it was yesterday. She was such a beautiful baby, with stunning blue eyes that twinkled when she would smile and about glittered when she laughed. I had so many hopes and dreams for her from the moment I first held her in my arms.

She was such a joy . Her laugh even as a baby and young child was contagious. Hearing her laugh would make you smile and laugh.

This obviously isn't a baby picture of her but this is my Turtle..

Little did I know when Casey was born that she had a potentially life threatening disease. I found out about her Muscular Dystrophy in May of 1993. She was only 13 months old. The doctors opinions differed so much. Some gave her grim outcomes full of no hope.Others wouldnt really comment since Muscular Dystrophy in girls was and is not as common as it is typically found in boys and could only offer speculations.

My dreams for her changed that day. That day in June when all the tests came back my hopes and dreams changed. The doctors had set up a challenge and we were up for it. We had no other choices that were acceptable.

I set out to help Casey prove the doctors wrong. They told me she would probably never live to be a teenager. They told me she would never be able to feed herself. She would never brush her own hair or teeth. That she would never be able to sit up , roll over , crawl and would never ever walk.

The doctors thought they knew everything based on some tests. In reality they didnt know Casey or I very well. They didnt know I would do everything in my power to prove them wrong. They never took into account what the power of love and faith could do. Faith and love alone can move mountains.

I encouraged her to reach her dreams and go after what she wanted.

Literally.

I knew that if someone wants something bad enough in life they will push themselves to achieve their goals. When Casey got her diagnosis I refused to believe that she would never do anything. I would intentionally set a toy just out of her reach and encourage her to go get it.

Don't think I was being cruel, I was encouraging my daughter to reach her potential and not to be afraid to go after life.

Within a few months of her diagnosis Casey was sitting up totally on her own unassisted. She was rolling over to get to what she wanted and army crawling. 

I was so proud of her for her accomplishments already. She was showing a glimpse of who she would become. An amazing young woman who wouldn't let her disabilities get in the way of her living life.