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 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.

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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