In Loving Memory of
Tyler Steven Gilman
December 28, 2000 - December 16, 2001



Remembering

Go ahead and mention my child
The one that died, you know
The depth of my pain doesnít show.

Donít worry about making me cry
Iím already crying inside.
Help me to heal by releasing
The tears that I try to hide.

Iím hurt when you just keep silent
Pretending it doesnít exist,
Iíd rather you mention my child,
Knowing that he has been missed.

You asked me how I am doing
I say ďpretty goodĒ or ďfineĒ
But, healing is something on going
I think it will take a lifetime.
~ Author Unknown






More of Tyler's Story


Tyler was diagnosed with SCIDS, (severe combined immunodeficany syndrome) on May 2, 2001. Little did we know that this diagnosis would change our lives forever.



Tyler was first hospitalized at Children's Hospital in March of 2001, with "Rota Virus", Thrush that wouldn't go away, and also diagnosed with what the doctors called "failure to thrive", at 3 months old only weighing about 9pds. The doctors there ran every test they could think of because they knew something was wrong, but the were not sure what it was. Every test came back negitive. It wasn't until the day he was to be discharged that the Infectious Disease doctor came in to see him, to do one final test that would take 2 days to show a result. This doctor injected yeast under the skin on his arm. He told us that the purpose of this test was see if he had a reaction to the yeast.(a reaction meant a good thing.) so he was discharged to go home with us. 2 days later we went back to the doctor, there was no reaction to the yeast. The Infectious Disease doctor suggested that we send a blood sample to Dr Buckley (immunology doc), at Duke University in Durham, NC. Tyler was again hospitalized to receive IVIG, and monitered over night.



May 2,2001 we were told that the test results were back, and Tyler had SCIDS. We were also told that the only treatment for this disease was a bone marrow transplant, that was to be done in NC at Duke University. So, off to Durham we went 5 days later.


This is Duke University in North Carolina, where Tyler stayed for 9 months.



May 17, 2001, Tyler received his first bone marrow transplant, and seemed to be doing well for the first 2 weeks. After those 2 weeks he started having one problem after another, including a fever that would not go away, again, test after test, blood culture after blood culture, still found nothing. They began treating him with antibiotics anyhow, because he was immune compromized. Ty also had other problems with the proteins, and minerals, and was on all kind of supplaments to keep his levels normal. Starting 3 months after transplant he began having immune studies done, this would have been August of 2001. These studies showed some T-cell function, but not enough.


Which brings us to November 29, 2001, when Tyler under went his second Bone marrow transplant, in hopes that it would greatly improve his T-cell function. To bring you up to date on growth wise, Ty at this point only weighed about 14pds at 11 months old. Things seemed to be going ok, except for a little swelling, which they gave lasix. They said his Albuman level was low, which was causeing the swelling, and began giving him the supplement.


Just 2 days later Tyler was having trouble breathing,(12/12/01), the docs were watching him close, and at about 7:30 pm he just got "tired" of breathing, he then went into full arrest, and was given chest compressions and taken to the PICU, where he was put first on a vent, then on a ossalater to breath for him.



December 16, 2001, he stopped responding to the cardiac and blood pressure meds, and his kidneys had shut down,which caused him to swell excessively. The doctor then came in and told us there was nothing else they could do, and that was when we had to make the hardest decison of our lives, which was to end our precious little boy's suffering, and to let him go back to the lord. We decided to shut off all life support.


They took the tube out of his mouth, and unhooked him from everything, and handed him to me,(mommy) and at 4:15 am Tyler died in my arms, and went to live with Jesus, and play with all the other "SCID ANGELS."






Broken heart

Once a heart is shattered, can it ever mend?
Once your spirit is broken, can it ever be whole again?
Each little piece is sacred, each little piece must fit.
But When a piece is gone, there is no replacement for it.
We learn to laugh and smile again, and feel guilty when we do.
We learn to live our lives again, all the while missing you.
I know you want to see us smiling and happy for you
Youíre in heaven angel, but we wish we could see you too.
My heart, it feels so heavy, and yet I smile for you and laugh
Sometimes I want to scream-- this smile is just a mask.
If only it were tomorrow you know that golden day,
When once again I will hold you, and the pain will fade away.
Till then, my love, hold you in my broken heart
Iím trying to live again, Today is a brand new start.
~ Author Unknown


Mommy, When I Went To Heaven"

Mommy, when I went to heaven,
I took part of your heart.
Just so you will always remember me,
And know we will never be apart.

Mommy, when I went to heaven,
I was not alone.
They were waiting there for me,
The day the Lord took me home.

Mommy, when I went to heaven,
I seen you crying down below.
I tried to touch you,
And let you know I love you so.

Mommy, when I went to heaven,
I know you didn't want me to go.
So the Lord let's me come back once & awhile,
I kiss you just to let you know.

Mommy, when I went to heaven,
They promised you would feel my touch.
I am here for you, mommy,
I miss & love you so much....
~ Author Unknown




I found this poem on the labor of love, and thought it would fit for my little Tyler. we are also having it scripted on the back of his headstone.


"Oh Little Angel"
Oh, little boy, we looked forward to the day you would be born,
but alas the lord left us forlorn.
You didn't leave us without a fight,
You fought to stay on earth with all your might.
You are now resting in the heavens above,
You left surronded by your family's strong love.
Our arms are now empty, our hearts are so sad,
you will always be remembered by your mom and your dad.
So to God your tiny soul we release,
We know that your heart is at eternal peace.
WE LOVE AND MISS YOU TYLER.......






A Visit from mom

I drove into the cemetery
With tears in my eyes today
I placed a flower upon your grave
And bowed my head to pray
Looking at the simple marker
Nothing fancy or overdone
I couldnít help but cry as I read
The birth and death of my youngest son.
I told you how much I miss you
Your face I could clearly see
You have died, but are not lost
You will always be a part of me.
Thereís emptiness in our home now
An empty house an empty chair.
Our family is broken forever
A sonís love is no longer there.
So Iíll say goodbye for a little while
Sleep in peace and always know
I didnít want to give you back to god
He took your hand, and I had to let go.
~ Author Unknown








 



Thank you to my dear friend Rosemary for all your help with Tyler's animations and special framed pictures. And thank you to Joyce for helping with the tags for Tyler's pages.



A friend can hear a tear drop.



This webpage is created
In Loving Memory of Tyler Steven Gilman
on April 13, 2004
Last updated: February 11, 2014
© 2000 - 2014







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