Special thanks to the namesinthesand blog for the beautiful tribute!!
Friday, November 21, 2008
"Real" by MK / Where We Are
This is Blake, thought I would share this song we recorded while
Lucas was still in his mom's womb. MK got the lyrics to this song
in about 5 minutes flat and we recorded a while back after the
album studio work was finished for the Revealing's CD.
It's a rough recording not professional but I still love it and hope
you like it:
Also, MK shared this song with me last night as to where we are right now in the beginning of moving on with what sometimes feels like a different life for us now with out our baby with us anymore... ...
Lucas was still in his mom's womb. MK got the lyrics to this song
in about 5 minutes flat and we recorded a while back after the
album studio work was finished for the Revealing's CD.
It's a rough recording not professional but I still love it and hope
you like it:
Also, MK shared this song with me last night as to where we are right now in the beginning of moving on with what sometimes feels like a different life for us now with out our baby with us anymore... ...
Monday, November 10, 2008
Congratulations to Catherine & Jason / Other thoughts
Congratulations to Catherine & Jason on the birth of their new son Callum Andreas Lucas; words can't express the honor of having them keep Lucas's namesake with their brand new baby boy; all we can say is thanks and though we've not meet yet we will always be together...
as life moves on we are missing our baby so much; Had good weekend, a short trip to see Blake's dad, step-mom & family in SE Arkansas with Pierce. Worship was unbelievable Sunday and we know the God is great!!
Some of our emotions are captured within songs in the following awesome videos:
as life moves on we are missing our baby so much; Had good weekend, a short trip to see Blake's dad, step-mom & family in SE Arkansas with Pierce. Worship was unbelievable Sunday and we know the God is great!!
Some of our emotions are captured within songs in the following awesome videos:
Sunday, November 2, 2008
Hallowin
At BNC we call it Hallowin, going out to pass out salvation / vision DVD's to the community during our trick-or-treating... ....
So here we are the Cowboys and their Indian Princess
Thursday, October 30, 2008
4 weeks gone bye... ...
The dull emptiness is still and always will be all so real... ... only time has distanced us from the sharp pain our loss four weeks ago.
Have pictures to post of our time at the State Fair with Pierce and family but the time will come to post those later. Also, we've decided to bring Pierce home from pre-school till January or so to get to know him again. It's been hard taking him to Easter Seals each day and walk past Lucas's old class room etc...; and Pierce has had some tantrums lately, not sure if they are related to Lucas being gone or just typical 3 year old stuff; but he does seem to us to be more upset at letting go of things he really loves, like his cars and bike??
Still working on Lucas's shadow boxes... ... So, we are moving on though trying to still focus on Lucas with the blog for now; we carry him in our hearts and see him in the stars shining down on us. The sky has always seemed extra blue and bright since our Lucas ("bringer of light") is in the heavens now... ...
"IF I KNEW"
If I knew it would be the last time
That I'd see you fall asleep,
I would tuck you in more tightly
and pray the Lord, your soul to keep.
If I knew it would be the last time
that I see you walk out the door,
I would give you a hug and kiss
and call you back for one more.
If I knew it would be the last time
I'd hear your voice lifted up in praise,
I would video tape each action and word,
so I could play them back day after day.
If I knew it would be the last time
I would be there to share your day,
Well I'm sure you'll have so many more,
so I can let just this one slip away.
For surely there's always tomorrow
to make up for an oversight,
and we always get a second chance
to make everything just right.
There will always be another day
to say "I love you,"
And certainly there's another chance
to say our "Anything I can do?"
But just in case I might be wrong,
and today is all I get,
I'd like to say how much I love you
and I hope we never forget.
Tomorrow is not promised to anyone,
young or old alike,
And today may be the last chance
you get to hold your loved one tight.
So if you're waiting for tomorrow,
why not do it today?
For if tomorrow never comes,
you'll surely regret the day,
That you didn't take that extra time
for a smile, a hug, or a kiss
and you were too busy to grant someone,
what turned out to be their one last wish.
So hold your loved ones close today,
and whisper in their ear,
Tell them how much you love them
and that you'll always hold them dear
Take time to say "I'm sorry,"
"Please forgive me," "Thank you," or "It's okay."
And if tomorrow never comes,
you'll have no regrets about today.
Have pictures to post of our time at the State Fair with Pierce and family but the time will come to post those later. Also, we've decided to bring Pierce home from pre-school till January or so to get to know him again. It's been hard taking him to Easter Seals each day and walk past Lucas's old class room etc...; and Pierce has had some tantrums lately, not sure if they are related to Lucas being gone or just typical 3 year old stuff; but he does seem to us to be more upset at letting go of things he really loves, like his cars and bike??
Still working on Lucas's shadow boxes... ... So, we are moving on though trying to still focus on Lucas with the blog for now; we carry him in our hearts and see him in the stars shining down on us. The sky has always seemed extra blue and bright since our Lucas ("bringer of light") is in the heavens now... ...
"IF I KNEW"
If I knew it would be the last time
That I'd see you fall asleep,
I would tuck you in more tightly
and pray the Lord, your soul to keep.
If I knew it would be the last time
that I see you walk out the door,
I would give you a hug and kiss
and call you back for one more.
If I knew it would be the last time
I'd hear your voice lifted up in praise,
I would video tape each action and word,
so I could play them back day after day.
If I knew it would be the last time,
I could spare an extra minute
to stop and say "I love you,"
instead of assuming you would KNOW I do.
I could spare an extra minute
to stop and say "I love you,"
instead of assuming you would KNOW I do.
If I knew it would be the last time
I would be there to share your day,
Well I'm sure you'll have so many more,
so I can let just this one slip away.
For surely there's always tomorrow
to make up for an oversight,
and we always get a second chance
to make everything just right.
There will always be another day
to say "I love you,"
And certainly there's another chance
to say our "Anything I can do?"
But just in case I might be wrong,
and today is all I get,
I'd like to say how much I love you
and I hope we never forget.
Tomorrow is not promised to anyone,
young or old alike,
And today may be the last chance
you get to hold your loved one tight.
So if you're waiting for tomorrow,
why not do it today?
For if tomorrow never comes,
you'll surely regret the day,
That you didn't take that extra time
for a smile, a hug, or a kiss
and you were too busy to grant someone,
what turned out to be their one last wish.
So hold your loved ones close today,
and whisper in their ear,
Tell them how much you love them
and that you'll always hold them dear
Take time to say "I'm sorry,"
"Please forgive me," "Thank you," or "It's okay."
And if tomorrow never comes,
you'll have no regrets about today.
Saturday, October 25, 2008
Extra Special Thank You's!!
We recieved the most wonderful gift yesterday from all of our CHARGE family across the world. Words can't express enough thanks to all our friends who contributed and produced such a fantastic scrap book of Lucas including special thoughts and words of encouragement. We can't figure out how you guys did it; ten moms from literally across the US and the UK each putting their own piece together combining to make such a precious tapestry of love for us.
Thank You so much seems like such small words for such a BIG expression of love, all we can say is we know we are loved, we love in return and will always be connected to you all. Thanks for being there for us and we are always here for you... ...
This is LOVE:
Also, thanks to one of my closest friends, Anna, for creating this piece of art for Lucas's room:
Thanks to the PICU unit for the hands and feet impressions:
Thanks to our family for the Lucas's room make over:
Thank You so much seems like such small words for such a BIG expression of love, all we can say is we know we are loved, we love in return and will always be connected to you all. Thanks for being there for us and we are always here for you... ...
This is LOVE:Also, thanks to one of my closest friends, Anna, for creating this piece of art for Lucas's room:
Thanks to the PICU unit for the hands and feet impressions:
Thanks to our family for the Lucas's room make over:
We are currently creating a shadow box which will contain some of Lucas's favorite things and will post pictures when it is complete... ...
Thursday, October 16, 2008
Cards & Letters / Thoughts & Prayers
The card above is one of hundreds our family has received concerning Lucas. This one is from his friends made over the coarse of his stay in the PICU at ACH. Words can't express our thanks to the staff there for making his stay and last days so happy for us and him.Thank you all so much for your expressions of love, condolences, and respect for us and Lucas; like him they will never be forgotten.
Two weeks have passed and the pain is dull and constant as we try to breathe and move these days; we are thankful for our Family, Friends, Faith, Hope, Love, and all the great memories of our Blue Eyes... ...
cute picture I had forgot about and just found... ...
sleeping beauties... ..Wednesday, October 15, 2008
Excellent article on Primary Pulmonary Hypertension in Children
Also after some further searching on the internet I found where children and infants with Pulmonary Hypertension and congenital heart disease had a mortality rate of 73% if having RSV (respiratory syncytial virus). With Lucas having CHARGE and PH and getting the adenovirus (very similar to RSV) looks like things (obviously) went down from there... ...
Also after some further searching on the internet I found where children and infants with Pulmonary Hypertension and congenital heart disease had a mortality rate of 73% if having RSV (respiratory syncytial virus). With Lucas having CHARGE and PH and getting the adenovirus (very similar to RSV) looks like things (obviously) went down from there... ...
Wednesday, October 8, 2008
Shine On Blue Eyes
You drifted into my life you blue eyed boy
My heart skipped a beat, then I was quiet.
So strong in your spirit with such a joy
You proved to us all that life is golden.
Unique and supple so soft to touch
An honor to hold, you and kiss you and such.
The greatest teacher I know laying in my arms
When the winds took a change and carried you home.
With all I am, is honored and blessed
To have held you at birth and held you at rest.
You are a piece of heaven God knew we would need.
To continue this life and sow new seed.
I was there through sickness, health, and death
You were the one who created in me the breath.
In my heart you live on, I see you in everything
To feel the wind on my face I know one day I will sing.
It’s ok to know that God called you home,
To help prepare a place for us, on the streets of Gold.
Around and around and around we go,
You are walking, talking, and singing with a glow.
This life has been touched by the strength you portrayed.
A picture, a tapestry, weaving away…..Shine On Blue Eyes!
My heart skipped a beat, then I was quiet.
So strong in your spirit with such a joy
You proved to us all that life is golden.
Unique and supple so soft to touch
An honor to hold, you and kiss you and such.
The greatest teacher I know laying in my arms
When the winds took a change and carried you home.
With all I am, is honored and blessed
To have held you at birth and held you at rest.
You are a piece of heaven God knew we would need.
To continue this life and sow new seed.
I was there through sickness, health, and death
You were the one who created in me the breath.
In my heart you live on, I see you in everything
To feel the wind on my face I know one day I will sing.
It’s ok to know that God called you home,
To help prepare a place for us, on the streets of Gold.
Around and around and around we go,
You are walking, talking, and singing with a glow.
This life has been touched by the strength you portrayed.
A picture, a tapestry, weaving away…..Shine On Blue Eyes!
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Lucas was born to us 5/10/07 and was soon diagnosed with CHARGE. CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. The letters in CHARGE stand for: Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and/or development, Genital and/or urinary abnormalities, and Ear abnormalities and deafness. Lucas's anomalies included with his case of CHARGE include minor heart defects of ASD and PDA, bilateral choanal atresia repaired at four days old, undescended testes repaired at seven months old, and ear abnormalities; also he has reflux and aspirated while feeding shortly after being born and thus had a G-tube and Nissen Fundoplication at five weeks old. Additionally he has PE tubes, very low muscle tone and facial palsy on his right side. Lucas was diagnosed with Primary Pulmonary Hypertension at 12 months old. He showed us how to shine through the rain as he lost his bravely fought battle and entered into Heaven on 10/02/08. He was our miracle on earth the 507 days we spent with him. For more information, visit chargesyndrome.org